Please Help Zach Get On the Road to Recovery
On May 7th 2015, Zach Kasow was in a single-car accident on HWY 280 North in California; his car rolled twice at full speed, and his 6’2” frame was pinned in it until the fire department used the Jaws of Life to cut him out. After an eight hour surgery at Stanford Hospital, Zach was informed that he had crushed a cervical vertebra that had damaged his spinal cord, potentially permanently. Zach is now experiencing paralysis but has been informed that with intensive physical rehab and other interventions he can lead an independent lifestyle and drive again if he so wishes!
Zach has dedicated his life to helping those with mental illness rehabilitate and live rich, full lives. A native of Morro Bay, CA, Zach is a graduate of CSU Monterey Bay where he completed his B.A. in Psychology and served as class president. Zach then spent nearly three years working at a nonprofit in Monterey County aimed at rehabilitating adults with severe mental illness, which inspired his decision to pursue a Master’s in Psychology at Cal Poly University. Upon completing his degree, Zach returned to working with adults with severe mental illness at a non-profit in Santa Clara County. He hopes to return to this line of work as soon as he adjusts to his injury and new abilities.
When not working, Zach has always been drawn to anything that challenges him to face his fears head on, including sky diving, swimming with sharks and bungee jumping off historical bridges. And everyone knows that Zach is a HUGE SF Giants fan!
Zach will need not only physical rehab services but also home medical supplies, home modifications, mobility equipment (such as a wheelchair custom built to his body), and financial support for uncovered medical expenses. Your contribution will ensure Zach can rejoin the community and resume his life to the fullest.
We have chosen to fundraise with HelpHOPELive in part because HelpHOPELive assures fiscal accountability of funds raised and tax deductibility for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Donate Now button.
For more information, please contact HelpHOPELive at 800.642.8399.
Zach has dedicated his life to helping others improve their lives. Now he needs our help to improve his. Thank you for your support. We couldn’t do this without you.
May 13, 2017
Last night marked the two-year anniversary of my accident. It occurred around 8pm while driving home from a work conference in the east bay. I’ll never forget that night. My mind was on the weekend – mentally dividing the duties my siblings and I planned to tackle in my mom’s yard for her Mother’s Day gift. I knew I had to pack some things so I could leave directly from work the next day. Then everything changed so fast I can’t even describe it.
I decided to commemorate it by driving past the site where the accident happened. When I drove by, I felt very empowered. This isn’t the first time I have driven the same patch of highway 280 but it was the first time I drove it for this reason. In the past, I could feel my heart rate go up significantly in my chest and then subside the further I got from it. This time, I did it as a way to take back my power.
I’m grateful to still be among the living. I very easily could have died that night either on the scene or shortly thereafter. I remember signing the informed consent for surgery the next morning knowing full well that I may never wake up. Still, somehow, despite all that occurred that night, I came out the other side and have made it my mission to return to normalcy as much as possible. Since then I have re-learned how to do virtually everything. Today my life is back to what it was pre-accident with very few exceptions. I would not be where I am now if it were not for the support I have received every day from those closest to me and all of you who have supported me in other ways. Some of you (you know who you are) have seen me at my very worst physically and emotionally. As I reflect on these past two years, words cannot express the depth of my gratitude to you and everyone else who has been generous enough to donate to my help hope live page.
It has now been more than a year since I began the process of being evaluated to drive a car again. Just writing that sentence is unleashing a flood of memories from those early days of driving again. Since then I have made a lot of progress toward mastering my fear. There are still times when someone will make an erratic move or will appear to be drifting into my lane which causes my heart to jump into my chest; however, they have only gotten easier to manage.
In previous posts, I wrote about volunteering for a study that would take 9 months and involve rowing on a modified machine to determine if the exercise would help maintain bone health. Well, I finished the study I volunteered to do involving rowing. I started the conditioning process (attaching electrodes and having my legs kick to strengthen the quad muscles in my legs) in June about a week after I started driving. By late July I was strong enough to start rowing in earnest. In mid-April I finished the 9 months of rowing and I have only 1 bone scan left to collect. The scans show my leg bones are very healthy. I’m not sure if the rowing increased their density or not. I’m hoping to hear back from the researchers when they have analyzed all the data. On another note, I have been invited back in the Fall to participate in another study examining the forces involved when functional electronic stimulation (aka: what was used in the rowing study) is used when a person is rowing, using a bike, or in a standing frame. It promises to be interesting.
Since the rowing study has come to an end, I recently joined a place where I will be able to start swimming again. I learned how to swim before I finished physical therapy fulling intending to start swimming regularly. While I have gone swimming a few times since then, I have not gone as much as I had planned when I learned. Well, just last week I signed up for an accessible pool so I can continue to exercise regularly now that the study I mentioned before has concluded. It’ll be a great way to stay active.
In previous posts and emails I have mentioned passing the second of my licensing exams. Starting next July, I will be eligible to begin supervising marriage and family interns seeking their hours. I’m looking forward to taking on some supervisees and coming full circle.
Being able to write this and share with all of you helps me to see all the good things I have going in my life. Sometimes I get bogged down in the struggles of daily life and I lose sight of the bigger picture. Thank you all for bearing witness to my journey thus far. I hope you will continue to do so.
September 8, 2016
A year ago today I left spinal rehab.
The second time around I spent just under 3 weeks learning how to do things like balance while seated (with no trunk muscles it’s harder than it sounds), exercise my muscles properly to avoid straining them or my joints, transferring between surfaces, hoisting my body from a low surface to a high surface (again, more difficult than it sounds with no trunk or leg muscles), and much more.
Before I left, they told me that rehab would truly begin when I got home. They weren’t kidding. I got so spoiled in the hospital with the wide hallways, the flat and hard floors, the wide doorways, and all the people who knew the patients were roaming the halls and were therefore looking out for us.
Despite putting on a brave face, I still remember how scared I was to re-enter the world. I wondered whether I would be able to get into bed, get myself from the apartment outside to somewhere I wanted to go, and return to work with dignity.
Reflecting on the last year I’m proud to say I’m back to driving, back to work, back to exercising, and back to most of my life as it was before the accident. Things are different, of course. Many of the aspects of my new life have become second nature to the point where I barely have to think about them.
Driving has been fun. I’m past the point where it feels like I’m going to throw up every time I get in the car. While I was in rehab, I thought it was a big deal when I got into a van to go on some outings and didn’t think I would drive again for a long time. The first few weeks were rough at times. I tended to avoid high traffic times to keep my stress levels as low as possible. These days I have been able to manage even during high traffic times. When I first started driving I was only able to break my chair down and rebuild it two times a day. My chair weighs 40 pounds so getting into and out of the car has made my arms quite strong. I’m now able to do it as many as 10 times a day. I can now make multiple stops, run errands, and even go out for lunch from time to time. I ran my first errand just a few weeks ago. I stopped at the store on my way home from work and bought something for dinner.
I’ve made some strides in the study I’ve been participating in. The last time I posted, I was still in the process of strengthening my quads and hamstrings in preparation for actually rowing. A little more than a month ago I made the transition to rowing. At first I rowed for a minute then would pull the handle with my arms alone. I was only able to manage a few of these repetitions. With some practice I was able to build up to 30 minutes worth of rowing for a minute and then “resting” for 30 seconds. When I was able to manage that, I graduated to 2 minutes of rowing followed by 30 seconds of rest. With the increase in rowing I had to build back up to 30 minutes of exercise. The increase in rowing has made me practice my form. When I was rowing for only a minute at a time I was able to get away with using only the muscles in my shoulders and arms when the proper technique involves using the large muscles in the upper back. Soon I’ll make the jump to 5 minute reps with the goal ultimately being to get up to 30 minutes of nonstop rowing. I haven’t done exercise like this for awhile. At first, on the drive to work, I kept thinking I was on the verge of a panic attack because of butterflies in my chest. It took me a few days to remember that feeling is an after effect to cardio exercise. It feels really good to be able to get my heart rate up in a healthy way.
My marriage and family therapist license came in the mail and now hangs in my office. I changed the signature in my work email account, ordered business cards, and submitted copies of the license to the various departments in the agency who need it. I can still barely believe that I’m done with that phase of my life. I’ve signed a handful of documents using my new credential. I’m almost counting down until I’m allowed to supervise interns myself.
Work has also been going well. A few weeks ago I was invited to go to a work related conference down in San Diego. It was the first time I traveled somewhere on my own. I drove myself to the airport, pulled my bag out of the trunk, wheeled myself into the airport then through security and onto the plane. I took a shuttle from the airport to the hotel and then got myself back home 2 days later. The conference itself was good. I learned some good stuff and also got some validation for some things I have known intuitively for some time now. I hit a few snags during the travel part. In fact, I was able to park right across the street from the terminal I flew out of and while crossing the street my bag rolled right off my lap in the middle of the street. Fortunately there was someone there who was able to pick the bag up and walk into the airport. From there I was able to check it into the airline. When I got to San Diego I was able to wheel myself to the shuttles. The tricky part was rolling up a small ramp with the 35 pound bag on my lap. Good thing for me there was someone there too and he was able to push me up that small ramp. When he offered I was caught off guard but it made my job much easier. On the way back I was able to get back to the car without incident. So, I was able to do almost everything myself. All things considered, everything went very well.
Nothing is easy but everything is getting easier.
June 28, 2016
It’s wild to think that by now, a year ago, I was settling into being back home from the nursing home and recovering from the pressure sore
Since my last update a lot has happened.
I have completed out-patient physical therapy. I’ve learned all they can teach me how to do. During my last session I showed I can do curbs and go down a flight of stairs. We spent some time talking about some exercises I should do to help keep my shoulders happy and healthy. I’ve noticed that over time my shoulders tend to get sore. With these exercises I’m able to keep my shoulders strong in all the right places. To do the exercises I use some different colored bands that I tie in a knot and then close a door on to keep them in place. The color of the band indicates the amount of resistance it offers. They told me the more consistently I follow the shoulder program the better my shoulders will feel. This shoulder program will be really important to maintain because I need my shoulders to be healthy so I don’t wind up stuck in bed recovering from an injury.
Not only have I finished physical therapy, I’ve started driving on my own. Toward the end of last year one of my last occupational therapy appointments was dedicating to breaking my chair down and loading into the car. It’s very different learning how to do this in a wide open room compared to actually breaking the car down and trying to load it into the car. It took some practice but now I’m able to get into the car, break the chair down, and load it into the passenger or back seat in about 5 minutes. It takes about the same amount of time to rebuild the chair and get out of the car. It feels good to be able to load up whenever I want. It was really scary driving by myself the first time. It reminded me of when I first got my driver’s license when I was 16. I remember feeling so nervous to drive along for the first time but when I did I felt so free and the fear just faded away. My first time driving alone with the hand controls was a mixed experience. For the first 10-15 minutes I thought I was going to throw up. I drove on the freeway for most of it. Before long, the anxiety passed and I felt free again. I have to admit that I feel triggered when someone cuts in front of me on the freeway but I’m starting to feel more comfortable.
Last week I started participating in a study through the VA and Stanford. The study is interested in seeing whether they can preserve or even increase bone density in the legs of people with spinal cord injuries. Over time these bones tend to lose density because they are no longer weight bearing. Maintaining bone density is important to reduce the risk of fractures from doing regular activities like transferring. This study will involve attaching electrodes to my quads and hamstrings to simulate the signal that would normally come from my brain to get these muscles to contract. Right now we’re working on conditioning my quads because I haven’t used them in over a year now. Once my muscles have been conditioned I’ll begin the actual experiment which will involve my getting onto a rowing machine and doing 30 minutes of rowing 3 days a week over a period of 9 months. During that time the researchers will measure my bone density using several different methods and compare their measurements over the course of the study. Earlier this week I had my first scan and learned that my left tibia is very strong. The researcher said that from what she could tell, the bone density in that bone is above average. This could be because of the amount of running I used to do before I was injured (an average of about 5-7 miles a day), it could be because that is how my bones naturally are, or perhaps a combination of the two. Right now, I’m 1 of 5 people in the study. It’s a small sample so it probably won’t show incredibly significant results but it will likely pave the way for future work in the area. I’ve gotten to be on the researcher side before and this will be my first time as a test subject. While the study doesn’t involve interventions meant to increase functionality it will give me a chance to get some exercise good for my cardiovascular system, it may help to maintain my bone density, and I’ll be able to help contribute something to how spinal cord injuries are addressed in the future. I think it’ll be pretty cool. Not to mention, having strong legs will be important if any of the other experimental treatments aimed to get people walking that are out there become available sooner than expected.
In my last update I was still waiting for my letter allowing me to take my second exam. Well, my letter arrived on June 1st. I was so excited that I went online that day and picked the earliest test appointment I could get which turned out to be June 21st. During the next 3 weeks I spent some time studying and reviewing all my materials. Last summer I had a chance to read over most of the stuff I would be tested on so I was able to review the outlines I made. I was able to answer over 800 practice questions before going in for the real thing. When the day finally came I was really nervous on my way to the testing center. Over the course of almost 4 hours I answered 170 questions about clinical evaluation, treatment, treatment planning, law, ethics, and crisis management. Out of the 170, 20 of the questions were test questions (which didn’t count toward my score) being validated for use in future exams. Around question 130 I felt so tired and wasn’t sure I would be able to make it to the end but I managed to push through. With about 15 minutes to spare, I finally finished answering all the questions to the best of my ability. At the end I thought I would get to see my score right away but a survey asking about my test taking experience popped up instead. After I finished the survey I thought my pass/fail results would pop up but they didn’t. The computer just went to the home screen. I waited for a minute to make sure it wouldn’t show as I was leaving but nothing happened. With my test session over I made my way toward the exit, got my things from the locker they assigned me, and returned my test materials, and the attendant handed me a letter saying I had passed. Needless to say, it was a huge relief to know that I am effectively a licensed marriage and family therapist. As soon as I got home, I sent a check and my application to the licensing board and now they’ll issue me a license.
With driving and my license done I need to set some new goals for myself. Don’t get me wrong, I’m definitely going to enjoy this feeling for a while. It just occurs to me that I don’t have anything long-term to work toward for now.
As always, thank you all so much for your show of support.
May 16, 2016
I had so much I wanted to post in my one-year anniversary update that I just couldn’t get it all out in time for the end of the day. Now that I’ve had a few more days I’m ready to post the rest.
I’ve found myself thinking a lot about a story about a carrot, an egg, and a coffee bean. Basically, the story is about what happens when each of these goes into boiling water. The once hard carrot softens, the once soft egg hardens, and the coffee bean remains the same but changes the water. In the story, the water represents adversity while the carrot, egg, and coffee bean represent what our responses can be when we face adversity. When asked “which are you?” it’s implied there is a correct answer. I suppose that if there was going to be a right answer, someone would want to be the coffee bean because it remained the same but changed its environment. I’ve started to think it might be more accurate to describe the carrot, egg, and coffee bean as the stages someone goes through after some kind of adversity. Lately I definitely identify with the coffee bean. Every day I’m getting better at adapting to the world, getting better at problem solving new obstacles that pop up from time to time, and doing my best to not let my injury define me.
I’ve noticed I have a complicated relationship with the compliments people give me about being strong, brave, etc. On one hand I enjoy them very much because I’m receiving positive attention for something I work very hard to do. On the other hand, I sometimes feel uncomfortable. I’ve grown fond of saying “it’s amazing what we can do when we have to.” I realize I’ve had to make choices to get to today. At the same time, they don’t always seem less like choices and more like compulsions. I experience the challenges I face as something I both want and need to face. Before this accident I probably would have said that I would be depressed if I were in my current situation. Being on this side of the injury I have to say there are days when I definitely feel depressed. There are days I don’t want to get out of bed because my body hurts, I feel any and all of the emotions associated with depression, and/or I just don’t want to fight with my body to get through the day. For me, pushing through these rough mornings helps me feel better because it reminds me that I have to power to choose. My choices aren’t always great but nonetheless I do get to choose.
Along similar lines, I sometimes feel frustrated when people tell me that “everything happens for a reason” or something along the line of “[God] will never give you more than you can handle.” It isn’t that I don’t believe these things. I think sentiments like these are very true and I know they’re sincere. At the same time, from my point of view, it’s much easier to say these things from the other side than it is for me on my side of things. I think they come from knowing something needs to be said but not knowing exactly what to say or being afraid of saying something wrong. I’ve been in that situation before many times. Even trained as a mental health therapist I don’t always know what to say when something bad happens to someone; even to someone I care about. As I write this, I find myself wondering what I would prefer people say to me. The truth is I’m exactly not sure. What has meant the most to me has been having people just be present, listen to me, and validate my experience. I’m not always positive and optimistic. Sometimes I am sad, angry, and just downright pissy.
Anyway, since my last post I have gone driving again and I am really getting the hang of the controls. On my third session I did some driving in a crowded downtown area, on some hills, on a winding road, and on the highway. The best part it was the first lesson where I didn’t feel a huge knot in my stomach or think I was going to throw up from nerves. In my fourth session he brought everything together. We went into downtown San Jose with its many one way streets, tons of pedestrians, and plenty of construction sites/lane closures. He had me play a game he created. The game runs for 10 minutes. During that time the driver is not allowed to break any laws (harder than it sounds between making full stops behind the line, signaling at the proper distance, keeping speed under the speed limit, etc.), the driver cannot go more than 3 books without turning, the driver cannot make more than 3 consecutive turns in a row (i.e., drive in circle). He give three chances to maintain all these rules for 10 minutes and the object is to “win” at least 2 of the 3 times. He started with a warmup round which I won. On my second try I started thinking too far ahead and wound up losing that round. I passed easily on my third try. Fortunately, I’m familiar enough with downtown San Jose to know where the one ways are, which way they go, and where there are some “easier” places to drive. Now that I’m done, he’ll send me a list of equipment I need and refer me to a place that will install the hardware. He’s anticipating it will cost about $2,000 for the equipment and installation. This is the last thing that stands between me and my independence.
I’m continuing to wait for the the letter telling me I can take my second MFT test. At this point it has taken longer to get the second letter than it did to get the results from the first test that was brand new and needed validation before scores could be issued. I’ve been checking the mail every day and I’ve started calling them too. Every time I call (several times a day) I can’t get through to anyone. Either the line is busy and it disconnects me or I’m sent a voicemail box that’s full. I’m growing very frustrated with this process. If they were to just send me an email stating something to the effect of “we’re really swamped, we have your paperwork, we’re working as fast as possible, and we expect to get to your file in _____ days/weeks I wouldn’t like it and yet I would understand and accept it. That’s what happened with the score from my first test. I was given a letter explaining it could take up to 6 weeks to get my results. I didn’t like it but I appreciated the warning. The wait continues.
I’ve posted some new pictures from car shopping and some Giants games.
As always, thank you all for your continued support. I take great comfort in knowing I am not alone.
May 27, 2016
I can’t believe today marks one year since my accident. One year ago I was attending a mental health related conference in the East Bay. After that conference my coworkers and I went across the street and ate dinner before heading back. I had parked in San Jose so I could carpool up to the conference. After getting back to San Jose I got in my car and started driving home. The next day I had been planning to go to my mom’s house for Mother’s day and meet up with my siblings to do some major projects my mom had been wanting to do for some time. On the drive home I was thinking about what I needed to pack and what time I should get on the road the next day. I was perfectly alert and paying attention to the road instead of playing with my phone, messing with the radio, or any number of things considered to be distracted driving. Then everything changed.
I can vividly remember losing control of the car, the way time seemed to slow down, the crunching of the glass as the car rolled, and the dirt and glass that found its way into my face. When it was all done, I remember looking around and thinking I needed to get out of the car to avoid getting hit by someone and being unable to open the door or move anything below my arms. Around this point people were stopping on the side of the road and calling out to me; asking if I was OK while I was looking for my phone which had been thrown out the window. Before long the paramedics were there and were asking me questions about my health, what had happened, whether I lost consciousness, etc. I kept closing my eyes because of the dirt and the glass which made them uncomfortable so they would ask me to stay with them and I would tell them that I was still there but had stuff in my eyes and to just keep talking to me. It was hard to breath. I could only speak about a half a sentence before I felt winded. They told me they would be doing something loud (using the jaws of life) and that I needed to stay calm. While I remember watching the cuts happen I don’t remember the machine being very loud. Finally, they were able to lift me up and out then load me into the ambulance.
Fast forward to now and everything I just described seems like such a distant memory. Even the months that followed in the hospital, recovering from the pressure sore, and returning to spinal rehab seem as though they happened several years ago. As is common for me, I can’t help but reflect on the last year. It has been enormously difficult between relearning how to do almost everything in my life and learning to adapt to the world around me. Despite all of this, I have made it to the one-year mark.
I have one more physical therapy appointment left before graduating. Since my last update I’ve gotten much better at negotiating curbs, I’ve learned how to go down stairs in an emergency, and I’ve reached the point where I can turn my head and carry on a conversation while doing a wheelie. I can get back into my wheelchair from the ground largely unassisted. I’m getting better at transferring between surfaces without using a transfer board but instead using only the strength of my arms and motion. At this point, I’ve learned all I can.
In my day-to-day life I have grown so tired of using the para-transit service in the area. It has been a great start to help me get out of the house. At the same time I have grown so frustrated in setting up rides, waiting for the ride to arrive, then driving around sometimes for hours while others are picked up and dropped off at their destinations all before going to work and repeated on my way home. It’s fairly common for me to be very late (an hour or more) to an appointment and it’s also fairly common for me to arrive up to two hours early. I know it isn’t anyone’s fault. No one can predict especially heavy traffic, how much help someone will need, how much someone may be running behind, etc. At the same time, I’ve really grown out wanting to use the service on a regular basis.
To do something about it; I recently started doing some car shopping. I started out by figuring out what kind of features I want like power seats, doors that open up wide enough for me to get in, and a trunk large enough to hold my wheelchair and other items. Originally, I thought I would need something like a small/midsize SUV. After trying some though I learned they didn’t work for me because I would have to lift myself up into the driver’s seat. While this is something I can do I would prefer not to have to this time around. I decided I wanted to be able to scooch laterally instead of having to climb out of the wheelchair or out of the driver’s seat.
On the driving front, this week I met with an evaluator specializing in adaptive driving equipment. That’s right, I’ve started relearning how to drive using hand controls. It reminds me a lot of learning how to drive the first time. He explains to me the things I need to keep in mind while driving like the different laws of the road while also helping me fine tune the controls. In my first session I started off by only handling the steering wheel while he managed the gas and the brake. After several minutes he asked me to handle the braking and the steering. Once I showed I could do that, I took over the gas too. We practiced stopping (completely and behind the line) at stop signs, turning left and right, then changing lanes. During my second session he put me through a more difficult course that involved going through school zones, a crowded shopping area, a very busy street, and an expressway (not to be confused with a highway). He says he’s confident that after my third lesson I’ll be proficient enough to drive on my own.
In other news, my standing frame arrived and I have been using it as much as possible. It has been helping to address the spasms that pull my legs back. However, while those spasms have gotten much better the spasms that kick my legs out have gotten worse. To address that, I’ve been learning new stretches meant to help the muscles in my hips. I thought it was my quad muscles but later learned my quads are quite loose (which is good) while the muscles in my hips have been very tight. I’m hoping that with some practice and some consistent stretching my spasms will calm down significantly. It feels good to get in the standing frame though. I like to get in it and watch TV after work. I’ve done it enough now that I don’t even need medication to help manage my blood pressure. I discovered not needing blood pressure medication almost by accident. Before work my legs were really bothering me and I decided to get in the frame to stretch them out a little bit but not a full stand. I pumped up the machine to where I could get some stretch and soon realized I didn’t feel lightheaded. After that, I pumped it up so that I was at a full stand and was still feeling fine. All time, I’ve come a long way from the days where I would black out just from sitting up in bed.
Work has been going well. I’ve been back for just over seven months now. The agency, specifically the residential programs, are going through a state of transition which has been difficult. I’ve been working on several projects to help facilitate the new model we’re working toward including gathering and organizing materials to apply for accreditation, updating the job duties of staff, and trying to find ways to maintain our high standards up while keeping the workload manageable.
In my last post I mentioned that I passed my first licensing exam. Since then I have been waiting for approval to take the second test. Immediately after I got my results I filled out the paperwork and sent in my money so I would be eligible to take the second test but I have not heard back from them. It has now been two months. I’m to the point where I’m going to call until I find out I can take the test.
I still can’t believe it has been a year. Anyway, thank you for all your support.
March 14, 2016
I’m making more of an effort to write these updates more often. I didn’t even realize that two months passed from my December update until my February update.
A few weeks ago I began going to therapy to help address some of the mental and emotional aspects of my injury. Even as a mental health professional I have debated whether to share this or not. Anyway, it has been going well. It has been an important part of my recovery though. I’ve been talking a lot about my life before and then after the accident. I’ve been thinking a lot about it between sessions as well and looking to make some meaning and make sense of my new circumstances. It’s hard to put words to it right but by the next time I write my next update I’ll have more to share.
I’ve gotten some pretty good news over the past few weeks. Kaiser approved several more PT sessions for me so I can finish my outpatient rehab. I’m continuing to work on going up and down curbs. It’s getting easier for me to go up curbs but I’m still having trouble going down them. I can balance right up to the edge of the curb. As I approach going down the curb I really get in my head and tend to lose focus. Fortunately, there is always someone behind me to make sure I don’t fall backward and crack my head open.
During my last update I wrote about getting denied for a standing frame because I didn’t meet medical necessity. Shortly after getting this news I filed an appeal. A few weeks later I got a letter telling me I could submit additional information on my behalf. It was actually a lot of fun to write everything out. I sat at my computer and wrote up a letter outlining every reason they should approve the standing frame for me. I talked about my spasms which make transferring difficult which increases my chances of falling, waking me up in the middle of night contributing to sleep deprivation which comes with other medical issues, the increased chance of hurting my feet and legs if my feet drag on the floor, etc. I did some research and outlined all of that too. By the end I had almost three single spaced pages to submit. About an hour after I faxed it in I got a call from the person handling my appeal. He informed me that I had been approved for a one-time exception which means I’ll be getting the standing frame after all. He went out of way to explain that it was a one-time deal and I might not be approved for another frame down the road. This is fine with me. I figure by the time I need another frame it will be a problem for future me. Anyway, I should be getting the frame around Easter time. I’m really looking forward to it.
Since shortly after my accident I have been dealing with some ambulance bills. Two of them were approved and organized by Kaiser. One was to transport me from rehab over to the nursing home and the other one was to transport me from the appointment where I was informed I could remove my hard collar back home. I was able to get these all cleared up. The representative explained to me that somehow my coverage didn’t register when the rides were organized. The other ride was from the nursing home back home to start home health. This one wasn’t organized by Kaiser. I submitted it for payment by Kaiser but it was denied. I’m in the process of appealing this too. I wound up paying the ambulance company directly (for a reduced rate) and I’m trying to get reimbursed.
In other news, I got the results from my firsts licensing exam. This was a brand new test so the licensing board had to do item analysis to make sure it is a good test. They had to decide which questions to include in the future and which ones should not be included. It took until February 29th to get enough results to analyze. Anyway, I PASSED! On my first attempt I passed my first licensing exam. I have one more test to take before I’m licensed. It has taken more than five years between school, accumulating hours, waiting for the board to get back to me, and then I had to study and recover enough to actually take the exam. Once I’m licensed I will have much more autonomy and could open a private practice if I choose to do so.
Thanks for stopping by to check in!
February 18, 2016
Today (February 7th) means it has been exactly nine months since my accident and two months since my last update. My apologies for the second part.
As always, so much has happened since my update.
I’ve been back at work now for just over four months and I finally feel as though I’m firing on all cylinders… at least most of the time. In my last update I wrote about some methods I developed to help keep me on track. I developed this habit of making to do lists because I was experiencing a lot of mental “fogginess.” I assumed this fogginess was the result of hits I took to the head when my car was rolling on the highway. I didn’t worry about it too much because I thought that with time clarity would come back or I would learn to work around it. Since then I’ve learned that it was actually the side effect of a medication I was taking. Up until about mid-December I was taking a medication called Gabapentin to help control nerve pain I experience in my feet, legs, and lower torso. It did a decent job but I asked my doctor about anything else that may work better to help me feel more comfortable throughout the day. I was put in touch with a pharmacist who specializes in pain management. She took a look at my medication regimen and made a recommendation that would involve titrating down on the Gabapentin so I could begin something else a few weeks later. Until I started going down on the Gabapentin I didn’t realize just how much it was doing for me in terms of managing the nerve pain. At the same time, I noticed the mental fogginess starting to lift too. I started my new nerve pain management and so far it has done a decent job. It does at least as good a job as the Gabapentin but I don’t have any of the mental fogginess I did before. Altogether I think the switch was worth it. The pain isn’t gone but I have more of my mental faculty back.
My work days are getting back to about the same length they were before the accident. I take paratransit most of the time these days so I am at their mercy in terms of when I get picked up and dropped off. It isn’t uncommon for me to wait in the lobby of my building for an hour or more waiting for my ride to arrive in the morning. The good news is that there are certain components of my job I can do from anywhere. I get work email on my phone and have access to non-confidential files remotely so I can do things like updating the staff schedule, building spreadsheets to track various data that is helpful in running my program, and fixing any mistakes someone might make on punching in and out of their shift. I’ve also rediscovered podcasts which are available about almost any topic imaginable. Even when my day in my office may be cut short because of rides I’m still plugging away at my work day. Despite everything though I still find myself tired at the end of the day and exhausted by the end of the week.
Lately I’ve been able to push through at the end of the day. I’m rediscovering my enjoyment of cooking. Something many people probably don’t know about me is that I took several home economics classes when I was in middle school. The first one was required. My mom can probably attest to my being so upset when I came home from my first day in that class. However, I soon learned that I enjoyed using a sewing machine and cooking. In eighth grade I chose to take home ec. for both semesters. I made a blue teddy bear and black sweatshirt in the first part of both semesters and then learned how to cook all kinds of food like pizza, homemade pasta, desserts, etc. Anyway, I shoved all that to the back of my mind at some point and didn’t do much in the way of cooking for a long time. Like I mentioned before, I’ve recently begun looking up and making recipes involving primarily chicken. I’ve made chicken cordon bleu, spicy chicken tacos, a chicken and mushroom dish, a spicy lime chicken, and others. I’m not someone who just create recipes out of thin air but I do enjoy the process of making something from scratch. It also helps me feel like I’m contributing.
On January 29th I took my first MFT licensing exam. It focused on law and ethics. While taking the exam I had to keep reminding myself that the correct answers had to do with law and ethics only rather than best practices, theory, crisis, etc. It is a brand new test so it has to be validated before scores can be assigned. What that means for me is that I will have to wait about six weeks to receive my score. Typically, scores are shown at the end of the test but because this test isn’t ready for that yet I’ll have to get the score the old fashioned way. If I pass this test, I will be eligible to take the second of two exams and my journey toward licensure will be over. It has taken two and half years of grad school and over 3,000 hours of applied practice to get to this point. All told I’ve been working toward this goal for over five years.
In early December I was working with my physical therapist on getting a standing frame ordered to help address the serious spasms I experience in my legs and torso. I started medication to address these spasms the second time I was in spinal rehab but they have hardly been effective. When I discharged I started to go up on the dosage over the course of several weeks. Even when I reached the maximum dosage the medication was hardly having any effect. All I noticed it doing was making me feel physically tired (as though I had been running all day) and giving me a weird taste in my mouth. So far, the only intervention that has been effective at addressing my spasms has been spending time in the standing frame. According to the research I’ve read, sessions in a standing frame can be between two and three time more effective than standard range of motion stretches which I learned in spinal rehab and practice multiple times during the day. Just 30 minutes in the standing frame calms my legs and torso down for the rest of the day. Using the standing frame on a regular basis and for longer periods of time have been shown to have cumulative effects which means that if I can use a standing frame of my own on a regular basis I could begin to experience a lot more comfort in my body.
Despite all the evidence that the standing frame would be beneficial to me, both personal experience and a wealth of published, peer reviewed research my claim to get one has been denied. According to Kaiser I don’t meet medical necessity. I have started the process of appealing. Fortunately, after several years of working in mental health I have a bunch of experience advocating and demonstrating medical necessity to get denials reversed. I’m pulling out all the stops to demonstrate why I should get this standing frame. What blows my mind is that my doctor is recommending that I get a Baclofen pump implanted with a catheter that delivers medication right into my spinal canal. This is a much more expensive, risky, and unproven (Baclofen has no effect in about 15% of people and the oral version didn’t work for me). Hopefully this gets resolved quickly because my spasms have gotten to the point where it is very difficult to move from one surface to another without a serious risk of falling because my legs kick out making balance difficult or they pull in and increased the risk of over twisting a joint. I’ve decided that regardless of what Kaiser ultimately decides I will get one somehow because it is so effective and much less invasive than the pump option.
On a more positive note, I flew for the first time since m accident and have gone swimming twice. Flying was very interesting. I can’t go through the normal scanners anymore because my chair is metal. This means I have to be thoroughly patted down by the TSA in order to go through security. It is definitely a thorough pat down. There was no surface of my body that was missed and I was swabbed for residue of all kinds. When getting on the plane though I got to go first. Everyone was very helpful in whatever I needed. After a few tries I was able to transfer onto the airline seat. Swimming was a similarly enjoyable experience. Nothing has changed except I just can’t kick my legs. With the help of a simple foam belt I can float just like I used to. With practice I’ll be able to swim laps like I used to. I’m looking forward to getting good at swimming because it will be a good way to integrate more cardio into my exercise regimen.
Thanks for checking in!
December 8, 2015
Today marks exactly seven months since the day of my accident. I keep looking at photos taken during those first few week and thinking about my life now. So much has changed in such a relatively short amount of time. Just like in my last post, I’ve been thinking about time and how my perception of it has changed over these months.
Work continues to go well. I’m figuring out what works for me and what doesn’t. Fortunately I can still do most of the stuff I was able to do before. The things I can no longer do are taken care of by other people who are kind enough to do them. It’s a little hard giving up these tasks (simple things like taking out my trash or hanging something on my office wall). Sometimes I find myself missing my body more powerfully than before from time to time the thought that I’m less of a person/man pops into my head. I I start thinking about how I should be able to do these things for myself and wonder if others are doing them for me out of pity. These thoughts then lead to feelings of frustration and/or sadness. When this happens my therapist training kicks on at some point (it could be minutes or even hours) and I start to address these thoughts to address the feelings. I start thinking about some of the other people I saw in the hospital. Many of them had injuries higher up the spinal cord than I do. My injury is at the second thoracic vertebrae which means I have full control of my arms and hands. My sensation changes at my nipple line. There were a lot of people who could barely move their arms and were not strong enough to do much. Some of them required ventilator to breathe for them. Some of them had traumatic brain injuries that changed them entirely. Deep down, under everything else, I am grateful that I have people in my world who are willing to step in and do these small tasks for me. I realize that not everyone is so fortunate.
Back on the topic of work, I’m learning my new program and I’m learning how to effectively work in my new body. Since the accident my short term memory can be shaky at times. I’ve noticed that I can sustain attention on a task just as well as I did before. Where I tend to struggle is switching from one task to another. During that transition I can easily get lost in tasks that are unimportant. This is particularly important because I frequently have to shift gears. I may be working on the staff schedule one minute and then switch address something with a client then switch to responding to an email about licensing regulations. In other words, my job requires my brain to jump between tasks all day and getting lost in that transition isn’t good. Being me, I’m learning how to work around this with creating a ritual in the morning where I make a checklist of the things I need to do. I tend to include everything; big and small. I try to do as much as I can every day and then include anything left undone on the next day’s list. So far it has been effective in preventing me from getting lost in my day.
It feels really good to be back at work. I derive a lot of meaning and fulfillment from what I do. Working has been a big part of my life since I was 15 and got my first job. As I mentioned before, everyone has been so supportive and I am so grateful. I feel more like myself again.
My outpatient therapy has gone very well. I’ll finish Occupational therapy later this month. I have one more appointment to learn how to get into the driver’s seat of a car then break down my wheelchair and load it in the car. In Physical therapy I’m learning how to transfer between surfaces without a slide board. I’m also learning how to go down a curb then go back up the curb using my wheelie skills. I’ve also done a bunch of standing frame which has been fun and it also helps my legs not spasm as much which is nice. The amount of medication I need to successfully do the standing frame is slowly decreasing which was my experience with getting into my chair initially. I remember when I was still in the hospital I would see people doing the standing frame when I was in the gym. During my first stay, when it was nearly impossible to get me into a seated position without almost passing out, I would look at them and think I might never be able to get into a standing position again. Here I am several months later and my body is adapting quickly.
A few weeks ago I took the train down to my mom’s house in Morro Bay. This was the first time I left the area after the accident. It was the first time I rode a train in my wheelchair. The whole trip was full of firsts and it was very successful. I got to see my mom, my younger sister, and my brother. We had a mini Thanksgiving. All in all it was a lot of fun. My mom really went out of her way to be helpful. She got some ramps so I could get into the house. She made pathways for me and measured everything out to make sure I could get around.
I’ve been thinking a lot about privilege these days and how mine has suddenly changed. I notice it when I’m trying to move over uneven ground, when I can’t get through a door, when I have to search a parking lot for a ramp, etc. I must admit these are things I didn’t think about before. These weren’t obstacles for me before so I didn’t notice them. Now however, I can’t escape them. These experiences remind me of talks we used to have in school about race, culture, privilege, etc. I remember feeling so guilty because there was so much focus on history and how people who look like me have systematically put everyone else at a disadvantage. I felt guilty because I prefer to think that if I had been born at some other point in history I would be who I am now. Over time that guilt faded as I began to accept history be more aware of my privilege, and try to address discrimination to the best of my ability. I remember a disconnect though when people would share their experiences. It wasn’t that I didn’t believe them because I did fully. I think it was because it was experience I had never had; I could empathize with the experience but I didn’t fully understand it. These days I have a greater appreciation or maybe a greater understanding of these experiences. This isn’t to say that all of a sudden I know the pain of so many people who have not known my privilege. I find myself thinking about the experiences of others who only know some form of disadvantage or another. As I write this I what message a reader may glean. I hope my intended message comes out… I am so humbled by my journey to this point. I wish I had this perspective without my body changing so drastically but maybe there was no other way.
Anyway, thank you all for reading and for your continued support through everything!
December 2, 2015
I can’t believe it has been six and a half months. On November 7th I couldn’t stop thinking about the accident and the days following. In my mind I kept seeing the world turning the way I saw it turn when my car was rolling. I could almost feel the collar around my neck and the IVs in my arms. I could almost hear the sound of the paramedics and firefighters telling me to keep my eyes open and asking me questions about my medical history. I remember trying so hard to move my legs and get out of the car. I remembered asking whether it was normal to not be able to move my legs and being told it was not. I can still picture the doctor telling me that my injury was complete, his walking away, and wondering what that meant while knowing it did not sound good. Believe it or not, none of these were especially distressing; at least at the six-month mark. The day it happened I was terrified and could feel my brain wanting to panic while my mind was trying desperately to stay in control. Oh how time changes perspectives. Back then the days crept by so slowly and now they speed by just as quickly as they ever did before. The days I spent in the hard collar seemed to drag on and on but now they seem like a drop in the bucket. I’ve been out of the collar now twice as long as I was in it. I’m sure at some point, the first year in my new life will seem like a drop in the bucket too.
My outpatient therapy has been progressing well. In physical therapy I’ve spent some time in a standing frame two times. The first time I came prepared with all available blood pressure medications on board and some pressure socks on my feet. It was the first time in over a month that I had been in a standing frame. I set my expectations low, thinking I would need to build back up to it. The opposite happened. I was able to stand completely upright for 30 minutes without incident. The second time I did not have any medications on board but thought it would be fun just to try. I managed to get upright but could only manage for two minutes. With practice I should be able to stand upright without any blood pressure medication and possibly without any physical interventions like pressure socks. I’ve also been working on wheelies in physical therapy. My first day I was able to hold my wheelie for a minute and half. That day I couldn’t talk to or listen to anyone while I was doing my wheelie because it would break my concentration. Earlier this week was my second day doing wheelies and I did even better. I was able to not only hold a wheelie in one place but I was also able to move about the gym on just two wheels. I was able to go a complete lap without falling. In addition to being able to hold the wheelie and maneuver through the gym I was able to talk to the therapist and listen to what she was telling me. Later this week I’ll be getting into the pool for the first time!
In occupational therapy we’ve been able to get my wheelchair adjusted so that it is actually comfortable for me. Before last week I always felt like I was being pushed forward by my wheelchair. I also found it difficult to get my legs under tables during meals. Being in the chair all day was exhausting. By the end of the day my shoulders would hurt because I had to hold myself up all day. After a series of adjustments I now feel so much more comfortable in my chair. Now that I’m more comfortable in the chair I am able to focus on learning other important skills. This week I began learning how to break my wheelchair down to stow it in the car. It was raining so we had to simulate the steps involved in breaking the wheelchair down and loading it into the “car.” We talked about the characteristics to look for in a car that would be most beneficial for me. I’d like to start test driving some different cars soon. I’m not quite ready to drive just yet but I think it would be a lot of fun to see what is out there and what I might want to look out for in the future. My therapist says I’ll probably only need a few more of these appointments before I no longer need occupational therapy.
In other news, I went back to work a few weeks ago. It has been quite an adjustment to return to work. I’ve been so grateful for all the kindness my colleagues have shown me. Before coming back, I wondered how people would respond to me. I knew everyone would be nice but I wondered what they might say or do and they have been nothing but supportive. I’m really adjusting to being back. I was gone for over five months. This is in addition to a lot of change going on within the agency and then I was also transferred to another program whose facility is better equipped to be accessible to me. We’re still working the exact accommodations I’ll need to be successful. It has been fun reading up on recommendations from the ADA and seeing what is out there for people with needs like mine. Being back at work is helping to provide some structure and really give back some normalcy. I’m getting used to getting up in the morning, getting dressed, and going into my office every day. I’m relearning how to do my job because I fell out of practice during my time away. I’ve been getting to work by using paratransit some days and getting rides on other days. Doing this has really made me think about driving again.
Initially driving was something that was too scary to even think about. I remember being so nervous getting into the van when I was in spinal rehab just to go down the street. Since then, things have gotten easier to a degree. When the traffic is thin I don’t have any problems being in the car. When traffic is heavy though I get nervous. I get especially tense when the traffic is bad and someone cuts in front of the car I’m in. I grab whatever handle is closest to me and hold on tight. I’ve noticed I’m in a catch-22. I’m anxious to be in control but at the same time being in control is anxiety provoking. Despite all this though, I’ve started thinking about cars again. I’ve gotten some feedback from therapists with some tips on features I should consider looking for. None of them seem to agree on what I should get but the message that seems to be coming through is that I will need to figure out what will work for me personally. I think I’m ready to start test driving but it will still take time until I’m ready.
Thank you all for your continued support!
October 27, 2015
Apologies for the long break between updates. So much has been going on that I just can’t keep up with all of it.
In my last update I wrote about my bedsore quite a bit. The site continues to do well. Even though there hasn’t been an open wound there for a few weeks now I keep a fresh dressing on it most of the time in order to provide padding and reinforcement for the area. It gets checked every day to make sure it is healthy. I’ve also continued to take the supplements originally prescribed to help my skin heal. They’re good for other my other systems and they’re probably supporting my effort to keep my skin healthy so it seems like a good idea to me.
Shortly after my last post I celebrated my 29th birthday. The day itself was very mellow at my request. I enjoyed some of my favorite pizza and one of my favorite desserts, Cinnabons. On the other hand, the following weekend was full of surprises including my friends from the East coast (the people whose wedding I was supposed to be a part of back in August) came out to surprise me. This came right after one of my other favorite meals, shabu shabu (Japanese hotpot). We ate a bunch of good food and had so much fun! Other friends in the area also made appearances at different events. All in all, I would have to say I had an amazing birthday; one I was sad to say good bye to.
I started outpatient therapy a few weeks ago. I’ll be learning how to do things like breaking down my wheelchair while sitting in the car so it can be stowed, getting dressed in my wheelchair, and hopefully some alternative ways to stretch my legs. I’ll continue practicing going from a low surface to a high surface, improving my ability to do wheelies, and getting into the standing frame. If my therapist can demonstrate that getting into the standing frame is beneficial for me (most likely in the form of decreased spasms) then I may be able to get a standing frame of my own. Last, but certainly not least, I’ll likely be able to get into the pool. Now that my bedsore is closed my therapist is willing to try it out. Even before the accident, it had been a long time since I had gone swimming. I’m really looking forward to getting into the water again!
After what felt to me like a very long wait, my new wheelchair has arrived! The guy (Keith) who fitted me for it several was the one to deliver it and make sure everything was adjusted to me properly. He told me something that really surprised me at first. He said that I would likely hate the chair for the first few days I had it. I was really confused because I had been looking forward to it coming for weeks. He explained that sitting in the new chair would be challenging because my body would have to adjust. Instead of being allowed to slouch in the chair I am now sitting with proper posture among other changes. He told me to spend small amounts of time in it at first and then build from there. He also told me that I would likely be sore. On all of these counts he was absolutely correct. I felt immensely uncomfortable in the chair at first. I felt like I was going to fall forward all the time. He convinced me to give it a try before tinkering with it. His years of experience really paid off because he was absolutely right. My body has adjusted to it well for the most part. I think some tinkering may be in order but I feel much more comfortable now. On a separate note, I’ve decided to name my wheelchair Lola. In my family we have a tradition of naming our vehicles. Over the years, all of the cars in my family have been given names. I thought it would be fun to continue that tradition in a new way.
Over the last few weeks I’ve thought a lot about my experience the last five and a half months. I’ve been so fortunate to cross paths with so many kind people. My family and those close to me have been on point and I have been so grateful for them. I’ve thought a lot about the purpose of my injury. In a previous post I mentioned wondering if I am being punished for something I’ve done. Since then I’ve started to also wonder if maybe the purpose of the injury was to show me the goodness and kindness in people. Complete strangers have offered to help push me up inclines, cleared a path for me to get through, picked up things I’ve dropped, and held doors open. Looking through my list of donors I’m aware that many people I don’t know and have never met have contributed to my campaign. These acts have given me so much hope and inspire me to keep moving forward. Even though I feel alone at times, they tell me that I’m not. As I write these words and reread them I realize how corny they may seem. They are corny and I stand by them because they’re true.
I’ll do my best to not let more than three weeks pass until my next update.
Thank you all for your continued support!
October 14, 2015
It has now been almost a month since coming home from the hospital and almost five months since the accident. How time flies.
I’ve got some pieces of really good news to share this week along with an ever growing number of firsts.
First and foremost, the bedsore I’ve been nursing for over four months has finally healed over! Bedsores are a common problem for people with spinal cord injuries. They are the result of reduced blood flow to skin and tissue, usually over a bony part of the body. Most of the time a person senses discomfort and moves without thinking much of it. Since there is a lack of sensation and a lack of mobility in people with spinal cord injuries bedsores are a serious risk. They vary in their degree of severity from stage one which looks like some discoloration of the skin that doesn’t turn white when pressed and can heal relatively quickly to stage four which involves full thickness tissue loss exposing bone, tendon, or muscle which takes a long time to heal. Complications of these injuries can be very serious. Bedsores can be prevented by following a healthy diet, frequently shifting weight, and maintaining overall health.
My bedsore started developing within a week of my accident. When I got to spinal rehab the first time someone noticed a dis colored spot on my lower back and made a note of it. Within two weeks the spot had grown and the skin had split open to reveal a stage four bedsore. Rather than wasting those early rehab days I was sent to a skilled nursing facility and that wound vac I wrote about previously was put on. It was from the skilled nursing facility that I went home to do home health for almost three months. The bedsore started out about 5.5cm long, 2.5cm wide, and 2cm deep. Now it’s all healed over. I read recently that only 62% of stage four bedsores ever heal and only 52% heal within one year. I’m not out of the woods yet though. The scar tissue that has formed where the wound was before will take a long time (as long as two years) to settle and the skin will only be about 80% as strong as before. I’ll always be at risk for skin issues in that area of my lower back. I’m very lucky mine healed as quickly as it did even though it frequently seemed much longer to me. I’ll post some pictures for anyone who is interested in seeing what it looked like.
My second piece of good news came this morning. The custom wheelchair I was fitted for about two weeks ago hams been ordered and will be assembled soon. It is scheduled to be delivered to me on Thursday, October 22nd in the afternoon. That means I’ll be my temporary chair for just three more weeks! This chair is going to change my life in so many ways. My temporary chair doesn’t support my body well so I frequently have to use one arm to hold myself up. I have to lean way over to use the arm rest. It has foot holders that extend far out from the frame which makes making tight turns difficult. As a result of these foot holders I’ve been dinging up the walls at home and I have to get creative when I want to go from room to room so that my legs make it too.
Last week I learned that my request to continue my outpatient rehab at VMC was approved. I was expecting it to be denied and I would have to fight in order to get it approved. However, with little effort on my own part it was approved and I have setup my first physical and occupational therapy appointments. I start my outpatient therapy journey next week.
I’m excited to report that I’ll be returning to work soon! I’m working with my boss and the HR department to work out all the details. When I return I’ll be transferred to a similar but different program because the building is better suited to my new needs. It wasn’t a move I planned to make and at the same time I am so grateful because of how accommodating my agency has been for me. Plus I have the added benefit to be moving with the same assistant manager I worked with before.
I’ve had some fun “firsts” this week too.
Just yesterday I left home and went out into the community for the first time on my own. After the accident I got connected with the paratransit system in the area and used it for the first time. I went to the program where I used to work to attend a going away bbq for a friend/colleague as he prepares to transfer with me to another program. It was so fun getting ready to go. The guy who picked me up was really nice and funny. Then it was great to see a bunch of coworkers and peers I haven’t seen in nearly five months. All around it was a great experience.
Since coming home I’ve been out to eat several times. Each time I had a very good experience where people were very accommodating. Each of these was planned in advance so we knew what time to start getting ready, where to find parking, etc. Earlier this week though, Adryan and I went on a spontaneous dinner date to a little restaurant across the street. Not only was it fun to just head across the street for a spontaneous night out but the food was great too. It was another amazing experience.
I’ve been trying my hand at some chores around the house like washing dishes and washing clothes. They’re no more fun now than they were before and yet I try to have to fun figuring out how to do them. It’s a little harder now to reach into the sink or move laundry from one machine to the other. Each time I do them I’m learning how to make it work for me and having some success. Plus it feels good to know I’m contributing again.
Overall, I’m continuing to do well. At least once during the course of any given day I can hear myself think “I can’t do this” and then before long I’ve addressed whatever obstacle is in the way (physical or otherwise) and moved on. Things may never be easy but they are getting easier.
October 14, 2015
I’ve been home for just over two weeks. Honestly it has been a mixed bag. On one hand it feels so good to be out of the hospital and well on my way to getting back to my life. I’m no longer bound to a bed and there is no limit to how much time I can be up in my chair. My blood pressure is now well under control so I can be in my wheelchair without much risk of passing out. I have the skills to move fairly well through my world so I can get into cars, sit on the couch, and manage simple obstacles on walkways. On the other hand, there is carpet throughout most of the house, the hallways and doorways are narrower, and there are no professional staff on hand. These factors have made moving around at home more difficult.
I’m really looking forward to getting my permanent wheelchair. The chair that I’ve been using has been challenging. It isn’t really meant to be used by someone with a spinal cord injury. Plus it has contributed to my struggles moving around at home. The chair I’m going to get is going to be custom fit to my body. It will also have a rigid frame which means that it will be more efficient for me to move myself along. I’ve been fitted for it and now it’s being built. I should get it around the end of October.
While the physical obstacles have become much more manageable, some of the mental obstacles remain. Being home my reality is really starting to set in. There have already been several instances where I’ve been laying in bed or sitting on the couch and momentarily forgotten I have a spinal cord injury. When this happens it is when I try to move that I suddenly remember that my body is now different. It is a bit of a shock that I am no longer able to move like I once did. Up until the point I came home I think there was a part of me that genuinely thought my situation was temporary; that when I was done with rehab everything in my life would revert back to the way it was. This is not the case.
I’m starting to really see my world differently; I’m thinking about the number of transfers I need to make in a day, becoming increasingly aware of how I need to position my body in order to do small tasks like brush my teeth, and figuring out how I need to plan my day in order to accommodate my needs. As more and more becomes second nature I’m growing more independent at small tasks that once required a lot of support like moving from my bed to my wheelchair. This task used to require 2 people lifting me in a sling, then it became one person helping me move along a slide board and helping with my feet, and now I just do it on my own with someone present just in case. I think about how I need to position my feet, my hands, my hips, and my shoulders. My daily tasks are not easy but they are getting easier.
During my time at home so far I’ve had some more firsts I would love to share.
The day I got home from rehab I got into my bed for the first time in almost 4 months. After the accident I slept in a series of hospital beds. Most of them were filled with air to properly support my body and protect my skin from developing bed sores. I was concerned about sleeping in my bed again because of my history of bed sores and I was unsure I could sleep in it without needing to wake up every 2 hours and turn over to my other side. I was also concerned about sleeping in bed with someone else and not inadvertently bothering her. I’m happy to say that it is great to be sleeping in my own bed again without incident.
On Sunday, September 13th I put some of my real clothes (some jeans and a polo shirt) for the first time. Most days after my injury I wore a simple t-shirt and some basketball shorts. Over time I came to associate these clothes with being “ill” or “a patient” since I spent so much time in bed. As I was putting on these clothes it felt so strange and so good. I saw myself in a mirror and barely recognized myself. Every day since then I have made it a point to wear something other than basketball shorts. After putting these clothes on Adryan and I met up with some friends up in SF to attend an Armenian food festival. Everyone was so accommodating of me and many people went out of their way to help clear a path, manage obstacle, and we’re very kind. It was a great day!
Before I left the hospital I signed up for a chance to go to SFO and learn how navigate the airport in a wheelchair. The program is put on by United Airlines. It covers everything from how to go through security, how to get on the plane, what to do with your wheelchair, etc. They do a mock takeoff too. To top everything off, they offer lunch. Unfortunately I wasn’t able to go on this outing because it was at the same time I was scheduled to get fitted for my custom rigid chair. Nonetheless, I’m on the list for the next time the hospital takes people on this outing. When I go, it will be my first time in an airport.
Rehab has really started since my homecoming. All things considered, I think it’s going well. I’m looking forward to continuing my physical and occupational therapy.
Thank you all for your continued support!
September 15, 2015
My time at inpatient physical rehab is over. I kept writing an update for the second week but could not keep up with everything coming my way. All in all, it was everything I needed it to be and then some. Everyone was so good to me. I don’t think I could be more grateful for my experience there.
I gave everything to my program and I am reaping the benefits. Since my body is different now I have to approach the world in a new way. One of the big factors I have to keep in mind is energy conservation. It takes more energy for me to move around than it used to and I’m using parts of my body that weren’t intended to be my primary source of movement. I’m getting a much better understanding of how my body will move through space for at least the foreseeable future. It isn’t always intuitive but I can usually understand the reasons for the movements I need to make. As a result of all this work , my arms, shoulders and upper back are starting to show some definition.
Since my last post I’ve had some more “firsts.” I got to leave the hospital and go to a restaurant with staff and peers, riding in a van/car, be out in the community, pop some wheelies and hold them, fall down, stand up (with the assistance of a machine), and ride a bike.
With the recreational therapists I left the hospital and for the first time in almost four months I ate at a restaurant in the community. I’ve eaten food from plenty of restaurants over the last few months but this was the first time I was able to go to the restaurant. I went with a group of peers and some family members to a BBQ place that is just down the street from the hospital. In order to get there I had to load up into a wheelchair van. This was the first time I was in a vehicle other than an ambulance since my accident. I was a bit anxious about going on this outing but I knew this would be a good first step to feeling comfortable getting into a car again and driving again some day. It also didn’t hurt that there was a good meal on the other side. The combined experience of riding in the van and going to the restaurant was amazing! The food was also quite good.
Part of my therapy involved my learning how to do wheelies in my wheelchair. While wheelies are pretty cool to see, they also serve a very useful purpose. The small wheels in the front of the wheelchair the foot rest are prone to getting stuck on little obstacles like debris or the threshold of a door. Being able to do wheelies helps to deal with this problem. Instead of having to avoid every stick on the sidewalk or not going into a building that happens to have a threshold I will be able to go about my day. During my wheelie practices I did fall a few times. Fortunately there was someone there to catch me. Those experiences gave me all of the fear of falling with none of the physical consequences. I still need more practice but I’m definitely getting better.
Yet another part of my therapy involved my getting onto a hand propelled bike that I was subsequently allowed to ride around in the hospital. Doing this, I got to live out a lifelong dream in a place I never expected. I’ve had dreams of riding my bike through shopping malls and office buildings but never thought I would get to do something like that. Now I have.
Something I saw people doing during my last stay in rehab was the standing frame. A person sits on the seat, is strapped in, and then lifted either through brute strength or mechanical force into a standing position. It depends on the level of injury which of these a person uses. During the last time I was in rehab my blood pressure was so unstable that it was hard enough to get me into a seated position, let alone a standing one. Now that things have stabilized in that department I asked if I could try the standing frame. The first time I wasn’t ready with medication or physical interventions (an abdominal binder, tubi socks, and TED hose) but I wanted to give it a try. I didn’t last long but I was able to get get up to about 65 degree angle. The second time I tried I had everything onboard. I was able to get up to about 80 degrees and hold on (not feel my blood pressure drop too low) for about 5 minutes. Then, my last day before discharging, I was in the standing frame for a total of about 40 minutes and was able to get up to a full 90 degrees (fully standing) for a few moment before needing to be lowered. On this last try with the standing frame, I almost forgot my spinal cord was injured. I was almost sad to get back into my wheelchair. Nonetheless, it was amazing to be able to stand for the first time in almost 4 months.
During each of these experiences so many emotions swelled within me. Usually they were a combination of excitement, fear, happiness, and gratitude. So many times tears came to my eyes, almost uncontrollably. During each of these experiences all the time in bed, turning, waiting, pushing through rehab was all suddenly yielding something real and tangible. This isn’t to say the skills I developed weren’t real, this was my first opportunity to use them together, be out in the community, have some fun, and feel a sense of normalcy. Many times I would return to my room and tears would run down my face and a huge smile would come across my face. Some (riding in a car, going out to a restaurant, standing up) were things I didn’t think I would be able to do again either because of inability or fear. Others (wheelies and the hand bike) were opportunities to do things I had always wanted to try but couldn’t. I’m not exactly an emotional person and I would never describe myself as touchy/feely: and yet I was frequently overcome with some very strong emotions during my therapy and rehab.
During my last day, I thought about how over the summer I referred to rehab as “summer camp.” It really seemed that way in a lot of ways. I left home to stay somewhere I learned new skills and met people like me. It may be against the rules (see picture of the 10 nevers of physical therapy) but I had so much fun! During my time there, I saw so
I am eternally grateful to all of the staff at the spinal rehab center of valley medical center for everything. I am honored by their kindness.
In case anyone is interested, I’ve added some new photos. Some to my album dedicated to my second round at rehab. I’ve added more photos of my car after the accident in the album “Jane, dearly departed.” I also added some photos of the injuries I sustained (the imaging studies are not of my neck but are included to give an idea) and the clothes I was wearing the day of the accident.
Thank you all for your continued support and words of encouragement. I’m so comforted to know I don’t have to make this journey alone. I am so humbled by your support.
They say that rehab really begins when someone goes home. While I’m sad about leaving, I am so excited to begin the rest of my life.
Check back soon.
August 25, 2015
My first week at rehab is at an end and during that short time I’ve made a lot of progress. I’m incredibly sore in the best way. I’ve also been more tired than I have been in a long time and it has felt so good.
My program consists of several components that all work together to help get me as independent as possible. Monday – Saturday I have at least three hours of therapy per day. These three hours consist of one hour of physical therapy where I am working on skills that involve learning how my body now moves through space given my motor deficits. Another hour is dedicated to occupational therapy where I have been learning daily living skills. The last hour is dedicated to weight training. Monday, Wednesday, and Friday are the power days where I do more weight and fewer repetitions. Tuesday, Thursday, and Saturday are endurance days where I do less weight and more repetitions. In addition to these three hours of therapy I’m attending classes where I learn about various aspects of spinal cord injury like proper nutrition, how to properly take care of my skin, and resources that are available to me in the community. There are also recreational therapists who offer activities as a group an individually. I also interact with a nutritionist to make sure my dietary needs are being met and a psychologist to make sure my mental health is good. My doctors check in with me every day to make sure my physical health is addressed and my medication regimen is dialed in. Sunday is a down day and having been so busy all week I really appreciate the time off.
In therapy I’ve already made a lot of strides. Keep in mind, these skills build on each other. On my first day I set a new person record balancing while sitting unsupported. Previously in bed I was only able to manage sitting about 15 seconds before needing to put my arms out to support me. Well, this time around I was able to sit for almost 2 minutes. The next day I learned how to properly transfer into a car and how to roll my body on a mat to exercise my arms. On my third and fourth days I learned how to get from my stomach into an all fours position (quadruped) and from there how to go from a low mat onto a high mat. All these skills together will help me do things like get dressed in the morning, transfer into cars, and go between being in my wheelchair onto the ground and back again. I’ve gotten to practice these skills too with the exception of transferring from the ground into my wheelchair.
On my second day here, I was approached and told that swabs taken from my mouth and nostrils tested positive for MRSA. MRSA is a very common bacteria that is resistant to penicillin based antibiotics. My understanding is that most of the time this bacteria isn’t a problem for people in the community. In hospital settings however, MRSA can be bad for someone with a compromised immune system. Since I tested positive for this bacteria I have been placed in isolation. This means visitors coming to see me need to wear a yellow gown in my room and I need to wear a yellow gown outside my room. Fortunately for me I have a strong immune system so I’ve been unaffected. The hospital is trying to protect others who may be vulnerable. In addition to the gowns I have been in a private room. All things considered, this MRSA thing isn’t so bad. I get my own room and all it really costs is wearing a dress yellow gown. It doesn’t appear as though it will be treated which means I’ll get a private room for the duration of my stay.
During this week I’ve been very fortunate to do some things I’ve not done in almost four months. This week I was able to shave at a normal sink with a normal mirror. Not only was I able to have a normal shave, I was able to take a real shower. Before this week I was shaving in bed and bathing in a very creative way by covering the rental wheelchair in plastic then going outside with some warm water. These are small things I have missed so much since my accident. While doing them I couldn’t help but shed a few tears of both gratitude and joy. These are just two of the many “firsts” I have the good fortune to look forward to.
Thank you all for your frequent messages of support. They have been a huge motivation.
I’ve posted some new photos in the album labeled “Spinal rehab, take 2.”
Take a look.
August 25, 2015
I never thought I would be so happy to say that I am now in rehab but I am. I should probably clarify, I’m in physical rehab and not drug rehab.
I rode down here in an ambulance (my eighth ride so far) and for the first time I could actually see out the back window. I was a little bit scared to do it. Since the accident the thought of being in a moving vehicle let alone driving has been a source of anxiety for me.. My previous rides got me more comfortable being in a moving vehicle. I think it helped that I was unable to see much in those previous rides. On this ride I wanted to move closer to feeling comfortable with seeing I was moving with the goal of feeling more comfortable with the idea of driving in mind. It wasn’t so bad when I looked out the window. It was nice to see the outside world again.
In the time I’ve been here I can’t help but think about the last two and a half months. I was largely confined to being in bed in order to keep pressure off the bedsore and facilitate healing. When I did get up in the wheelchair I was limited to two hours a day. Since it was on my back I had to be on one side or the other; my stomach was an option for short periods of time but I spent the vast majority of my time on my sides. I had to turn frequently in order to not develop another bedsore somewhere else. My diet had to change (several times the recommended daily dose of protein, vitamins, and minerals everyday) in order to support my body’s healing efforts. For about two months I had a wound vac (this is a small machine that creates negative pressure on the wound; basically working as a mechanical leech and drawing the healing blood to the wound site which aids in healing) attached to my lower back so I had to be mindful of tubes while moving. I had to pass up fun activities like going to my friend’s wedding (I was supposed to be a groomsman and stand with him on his important day), seeing Book of Mormon (I had tickets for 7/11), attending a friend’s birthday dinner (at one of my favorite restaurants), and everything else that required leaving the house. While everyone did a great job to support me I did go a bit stir crazy. I share all of this to put my happiness in returning to rehab in perspective and complain a little bit.
Despite my complaints, the last two and a half months were something of a blessing in disguise. I originally arrived at rehab eight days after my accident. My body (especially my neck and shoulders) still really hurt, my left hand was next to worthless, I was wearing a hard c spine collar at all times, and my brain and psyche were still freshly traumatized. Keep in mind my car rolled over twice and there was enough force pushing down on my head that a vertebrae in my neck was crushed and two more down in my back were fractured. I’m lucky my skull didn’t just cave in. I’m lucky I didn’t die on the spot, in transit to the hospital, in the emergency department, etc. The accident took a big toll. All of this was going on when I was trying to learn how to live in my new life. With so much going on I’m not sure I would have been able to fully participate in my therapy and my recovery. In a round about way, the bed sore gave me a chance to take a break. I was able to get some distance, develop perspective, and move toward a place of acceptance of my new situation. With these I now feel more ready to participate in rehab and move on with my life.
In my short time here I’ve done well in all my therapy. Last time I was here I nearly passed out most of the times I was moved into my wheelchair. I was hoisted into my chair rather than transferring too. I had no knowledge of how my “new” body works or how it moves. Since then, each of these has changed dramatically. Now I can transfer into my chair with a decreasing amount of support from staff, on my first real day of therapy, I was able to sit and balance on my own for almost two minutes on my own (before my best was about 15-20 seconds), and I can turn myself in bed. I’m really looking forward to what I’ll be able to do soon with more time and therapy.
Thank you to all of you for all you have done to support me. There have been times when I was worried how people would respond to my situation. I’ve been met with nothing but support and acceptance.
August 16, 2015
Since my last post I have been working diligently to learn how to transfer from from my bed into my wheelchair using a slide board. I’m excited to report that I’ve had a lot of success! I’ve also had to learn how to get back in bed from the chair. I thought it would be about the same to transfer from wheelchair into bed but it isn’t. The bed is a bigger, sturdier object to push off of so it has been easier for me to transfer from bed to chair. The more I practice both, the better I get and the higher my confidence gets. I’m to the point now where my therapists say I’m doing it on my own and they are only spotting me.
This is a skill that the therapists in rehab tried to teach me during my first stay there. I came to fear it because I would frequently not feel well doing it (because of blood pressure issues), plus it hurt a lot (the muscles used to do this maneuver are right next to where I had very invasive surgery only a couple weeks prior), and I still had the hard collar on so it was hard to see what I was doing. Lately, these issues that plagued me in the beginning of my journey have fallen away and I’m looking forward to the independence this skill will offer me. In other words, I’m one step closer to being the staunchly independent person I was before.
Speaking of rehab, my referral has been submitted for my re-admission into rehab. I’ve been calling every day to make sure they don’t forget me. There have been many times I’ve thought about clients I have worked with over the years and the struggles involved in finding placement let alone getting placed. Nonetheless, I’m grateful for the experience because it has made me more savvy going through this process myself. My referral is under review due in large part to the bedsore that sidelined my rehab before. It started as a wound that was about 5.5cm long, 2.5cm wide, and 2cm deep (almost to the bone). Now it is tiny and could almost be mistaken for a birthmark. Despite its degree of healing I will need to be careful with it so it doesn’t reopen.
I’m really looking forward to going back to rehab. Not only will they teach me many needed skills (e.g. Transferring into a car, going up and down a curb in the wheelchair, and other activities of daily living) it will bring me closer to getting back to my life. Regardless of any functional improvements I might make in inpatient rehab or future rehab, my life is forever changed. Some of the people I’ve talked to have gone so far as to say that I have been reborn because my body is so different. I’m approaching a place of acceptance with this fact. I must admit that sometimes I’m closer to this place of acceptance than others. Nonetheless, I’m looking forward to doing things like go back to work. I enjoy my chosen profession; even during rough days. I derive so much meaning from working so I’m looking forward to getting back to it.
While I wait for my transfer to rehab, I continue to learn more and get up to date about what is on the horizon. There is one video is particular I’ve watched several times. It’s a TED talk in given by a man broke his neck on his trampoline and he shares his story of recovery. He went from being unable to move at all to being able to walk with a cane. His body still tingles like your hand when it has fallen asleep. Part of his story involves his and his wife’s founding of a rehab center for spinal cord injuries in the Salt Lake City area. My mom found this video and shared it with me. It brought us both to tears to hear this man tell his story and see how he has progressed. This video led me to others. There is a neuroscientist in Brazil who, with his team, built a brain directed exoskeleton. The man he built it for delivered the opening kick in the 2014 FIFA World Cup. This exoskeleton interprets electrical impulses from the brain and then executes the intended action. This technology is quite amazing and has a long way to go because the brain uses both electrical and chemical signals which will be better understood in time. Yet another exciting development is the application of neural stem cells to sites near the spinal cord injury. These cells are said to have the ability to migrate into the injury and rebuild the tissue. They can become any type of cell within the nervous system. Early trials have been promising in the sense that some function has been restored in some of the participants. Neural stem cell therapies are still new so more work is needed and it is exciting to see what will be possible.
I love the Internet. I love all the information that has been so readily available at all hours of the day. Watching and reading about all the opportunities that are currently available to me along with the glimpses I’ve had of what the near future holds gives me great hope. I think this hope is helping to change my outlook in a positive way. I find my self getting increasingly excited to go back out into the world. Going on the metaphor that my injury has been my rebirth; I’m looking forward to having a host of “first” times and the adventures that will accompany them.
I am playing the hand I’ve been dealt and I have some choices. My favorite card game is Texas hold ‘em so I think in those terms. While it might be tempting at times to fold and forfeit my chips to the game; I intend to continue to play (and sometimes bluff) my way through and turn my experience into something great. I’ve always preferred to take some chances and play through the game even when it doesn’t go my way because it’s worth the risk to try. One card can change the game entirely and make everything fall right into place.
Thank you all for your love, support, and well wishes.
August 5, 2015
I can’t believe it has been almost three months (August 7th) since my life changed so dramatically. Nonetheless, I continue to make more and more progress toward recovery.
Over the past couple weeks I’ve been working on sitting up at the edge of the bed largely on my own. I only do so when there are other people around so I have support and help if I need it. I’ve gotten to the point where I can smoothly transition from laying down to sitting at the edge of the bed. From there I’ve learned how to scoot from side to side. This feat has been challenging since the accident for many reasons. As you know, the injury has led to my blood pressure not always cooperating when it comes time to sit up. With medications and practice my body is now making the adjustment much more easily. The next challenge to overcome was a lack of trunk strength. I’m unable to flex the muscles that would normally keep me from falling over. I’m developing some muscle control in my back and my core which help but are unable to support me on their own. I’ve learned how to accomplish this balancing act by using my hands and arms to hold me in place. Initially, this was very tiring since my arms were not used to holding me up. Next I had to learn how to shift my body weight to make scooting possible since my legs can’t lift me up.
Before long I will begin learning how to transfer into my wheelchair. Up to this point we have used a lift and a sling to hoist me out of bed and then set me down in the wheelchair. Right now it takes two people, a sling, and lots of rolling and maneuvering to get me up and into the wheelchair. Pretty soon I’ll be able to get into my wheelchair on my own.
One of the key factors that has helped me in my scooting efforts has been the return of functioning in my left hand. For several weeks after the accident my left hand was significantly weaker than before the accident. There was also a non stop tingling in my ring and small fingers, the left side of my hand, and the left side of my arm. I had barely had enough strength in my hand to hold small objects. I didn’t have enough dexterity to touch my thumb and my small finger together. Over time and with practice my left hand has grown stronger and the tingling has subsided for the most part. It isn’t perfect but I’m grateful.
I’ve had the privilege of watching several educational and very inspirational videos about research on spinal cord injuries and related maladies. There are some very exciting developments and breakthroughs that have been reported in just the last year or two. A company called Rewalk has released an exoskeleton approved by the FDA available for purchase by consumers. An engineer at MIT who lost his legs is working on bionics that connect with our bodies far better than anything currently available. These limbs and exoskeletons that he and his lab develop enable people to walk in a way that is far more natural than the prosthetics we know. A neuroscientist in Switzerland has published and presented research into a technique for reawakening the spinal cord below lesions in rats and training them to walk again. He is now preparing to begin human trials. Another neuroscientist/rehabilitation expert very recently (within the last two weeks) published the results of a four person human trial using a method similar to the neuroscientist in Switzerland in which men paralyzed from the chest down have been able to stand up largely unassisted. While none of these are a cure they give me hope for the future.
I recently reached out to a representative from the Christopher and Dana Reeves Foundation. Actually, he reached out to me first. It was shortly after the accident while I was still in the hospital. He was a good sport given that it took me two months to reach out to him. I had been meaning to reach out to him for some time and met a significant amount of internal resistance. Some part of me knows I would benefit from some peer support and at the same time I don’t want it. I wonder if I fear having this peer support would be another reminder of how my life and my body will never be the same again.
I miss my body. I miss it every day. At night I have dreams where I relive memories from before the accident, live my life as though nothing has happened, or sometimes I am injured but somehow miraculously recover. When I wake up, sometimes I find myself asking why change chose me. I start to wonder if I’m being punished or tested. I wonder if I somehow brought this on myself. This internal dialogue goes on for several minutes until I somehow reach the conclusion that while my body can be broken, my spirit cannot. Once this happens, I feel ready to take on the day.
Thank you all for your love and well wishes.
July 22, 2015
I (Zach) wanted to take a turn writing this update.
We continue to be so touched by the generosity everyone has displayed. I read the message board at least once (sometimes more when I’m having a rough day) and I am so moved by your words of support, encouragement, and love.
So much has happened since the last update!
I’m probably most excited to report that the bed sore that cut my rehab time short has healed to the point where the nurse is calling it superficial. Hopefully it will close up soon so I can head back to rehab. It’ll take awhile (2 years!) to heal and settle properly but hopefully it will be healed enough soon so I can resume learning all the valuable skills I need.
I’ve officially stopped wearing the soft collar. I have pretty bad about wearing it from the start since I’m laying down most of the time and my neck is supported by pillows. I’m regaining flexibility and strength in my neck. I’ll keep it around for extra support when needed.
Earlier this week I started feeling some muscle soreness on my sides below the injury. I’ve also been feeling other pangs of pain from different parts on my lower back. Sometimes it is hard to tell the difference between real pain and the nerves in my spine getting irritated but I’m getting better at distinguishing the two. While these sensations aren’t exactly pleasant to experience I welcome them with open arms because they’re signs that I’m healing.
We mentioned before that sometimes it seems as though my body is possessed. For people with spinal cord injuries it is common for muscles below the injury to tighten on their own causing involuntary movements. For me, these movements aren’t painful but they do cause some discomfort. I’ve been doing some work with a physical therapist and have been learning the connection between stretching and the spasms that can make me feel so uncomfortable. I’m learning how to do my stretches on my own both in a wheelchair and in bed. So far doing these stretches has really calmed my body down so that I feel less possessed.
Outside of what is going on with my body I am doing well overall. I’ve kept my spirits up by spending time with people I care about, cheering for the Giants, eating good food, and reading all my messages of support. I’ve kept my mind busy learning about spinal cord injuries and all they entail, studying frequently for the MFT licensure exams, thinking about my future opportunities, sprinkling in some fun with some newly discovered computer games.
Thank you all for your love and well wishes.
Photos to follow soon.
July 7, 2015
New photos uploaded today! Take a look…..
Hello Friends! We have been absolutely overwhelmed by the generosity you have displayed on this page, and your supportive words on the message board always make Zach smile! Thank you all for your love and well wishes.
Zach continues to heal and grow stronger, and it spending more and more time rolling around the house in his wheelchair, which is a skill he’ll need when he goes back to physical rehab any day now! Initially it was difficul for Zach to sit comfortably in a wheelchair, mainly because a spinal injury impairs the body’s ability to regulate blood pressure effectively, and Zach was no exception to this fact. At first when he would transfer to the chair he would feel nauseous, lightheaded and he even nearly blacked out once. Now that he’s had more practice he is able to quickly adapt to shifts in his body’s alignment and enjoy being out of bed and in the fray. We love having him back in the world, even if it’s just the world of our home for now.
Zach’s sensation below the injury continues to gradually increase, and he’s even started exploring car options online! He’s eager to get back to work and on the road. We have enjoyed having family and friends over the hang out and can barely keep up with all the delicious food that is gifted to us by loved ones! We are truly blessed and humbled.
Have a great 4th of July everyone, and check back soon for more updates!
June 28, 2015
New pictures added in Zach’s Photo Album (below right)! Check them out.
June 28, 2015
This week we not only celebrated SCOTUS’ landmark marriage equality ruling, and the impending SF Pride celebrations, but also Zach’s continued recovery. On Wednesday, June 24th Zach was given permission to remove his hard C-Spine Collar (which was put on his at the scene of the accident and not removed since), and switch to a foamy, pliable Soft Collar that he can remove for up to 2 hours a day. It’s a huge step towards his independence and means he can now resume some of his daily tasks that were once hindered by the hard collar. He will require the soft collar for about 3-4 weeks, and after that he never has to wear one again!
Zach’s body continues to heal but still not much voluntary movement. We’ve had good days and hard days, we’ve been strong and we’ve been weak. Despite all he is going through, including a body that seems “possessed” at times, Zach has been a gentleman and a trooper, taking it all in stride. He hopes to get back into a physical rehab program within a few weeks, and from there back to his life.
Thank you all for your continued support. The messages to the right mean so much to Zach and our family. He checks them every day. Keep them coming, and God bless!
P.S. If anyone would be interested in posting flyers related to Zach’s situation in your neighborhood, break room, church, local library, etc. please email me at [email protected] Thanks!
June 28, 2015
June 16, 2015
Wow! We are truly shocked and deeply thankful for the outpouring of support Zach and his loved ones have received upon our public announcement of his recent injury. Far and wide folks have been spreading the word, fostering hope and making donations to directly impact Zach’s recovery. We are continually amazed by the compassion of others and want you to know your love and support has not gone unnoticed. Thank you! Gracias! Merci!
Speaking of Zach’s recovery, we are happy to report that he grows stronger every day and has loved being back in his home amongst friends, family and noisy dogs! Zach has regularly received visits from friends and family, including his mother Rhonda, a RN whose skills are being put to exceptional use in the circumstance-we’re appreciative of her professional wisdom! Zach also has regular visits from a physical therapist and an occupational therapists, both of whom challenge him to build strength, learn new skills and expand his range of motion and control. He is also beginning to study for the MFT license exam later this year, which works his best feature-his mind! If you’d like to swing by to see us please don’t hesitate to reach out.
If you or someone you know would be interested in copy of Zach’s fundraising synopsis letter, complete with his picture and information about his life and the accident, please email me at the following address: [email protected] We would be happy to provide you with a copy of the letter to share with friends, coworkers, your congregation or even strangers!
Thanks again for the love and kindness, and check back with us soon for more updates!
June 10, 2015
We are happy to report that Zach is at home! He will be doing Home Hospital with us in the Bay Area (NOT at a hospital or nursing home!) until he’s healthy enough to return to his physical rehabilitation program in Santa Clara, CA. In the meantime he’s doing physical therapy, working out and and spending time with friends and family. If you’re in the area come swing by and see us!
Photo Galleries (6)
June 29, 2016
So proud of all you've accomplished in the past +1 year Z! Through all you have endured this year you never gave up on your goals and ambitions. It's something I greatly admired about you when we first met, and I'm even more amazed as time goes on. Here's to our upcoming vacation and a life full of adventure!
June 8, 2016
Z-- looking forward to seeing you in early June. I hope you and Adryan enjoy the cooking class. You guys deserve a date night to unwind, learn new recipes, and just bask in each other's company. You both work so hard, and I hope soon you guys get the green light for the second test. Miss you
June 8, 2016
That story about the carrot, egg and coffee bean really lays it out. I am so glad you are light roasting and toasting to life, and it inspires me to do the same. Best on your recovery discovery.
June 8, 2016
As a huge thank you for helping me prepare my resume so I can hopefully enter this next chapter of my career, I am donating to your cause. This world would not be the same without you Zach! You are a gem!
February 18, 2016
Dear Zach, Sheree Brekke is my dear friend and my gift to you is my birthday present to her. She does not know it yet but I know that this is the best gift I could give to her today. This is also in honor of Tobias because it would make him happy too! That is the kind of man he was. I am a Licensed Marriage Family Therapist here in San Luis Obispo. I have been practicing for over 25 years, but I do remember the wait for my licensing exam results (it was not instant in those days either). I will never forget the day I received my license in the mail and I am holding good thoughts that you will soon have this experience too. You sound like a very special human being and I have no doubt that you will contribute much to the profession. For one who welcomes challenges, you have chosen a rewarding career. I am grateful everyday that I am able to contribute to the lives of the amazing people who come to me for guidance. They enrich my life in more ways than they will ever know.......and this is what I wish for you!
Lynn Swanson, LMFT
February 18, 2016
Dear Zach, today is my 1st birthday without my beloved husband Tobias. He died 5 months and 3 days ago and it still feels like it just happened. I woke up crying and then saw your beautiful update letter. Thank you for putting a new perspective on the day ahead of me. I'm sure you will help many people in the years to come through your work. Being in a profession of helping others runs in your family obviously ! Your Mom is one of the most tender-hearted and competent RNs I know. I am not back to work yet so I haven't seen her for a while. I've been really nervous about going back to work in the same place where my husband died. So thank you also for the dose of courage! Your path has been incredibly difficult and you have traveled it with grace and courage. I wish this donation was more. Money is strange. I mostly think "it's just money so we should share it". On the other hand, when you need it, it takes so much energy thinking about how to obtain it, yes? I hope this frees up a few of your amazing brain cells to continue forward and achieve your goals. With love and respect, Sheree
December 9, 2015
Hey Zach, Enjoyed reading your latest update about all your practice, progress and reflection. Best to you as you continue to move forward and see you soon!
October 27, 2015
Thanks for the updates, so great to hear about your progress and how you are doing. Paul and I are looking forward to helping you guys move into your new place in November! Such an exciting time. Keep up the hard work, and see you soon!!
Love, Britt and Paul
October 14, 2015
Hey Zach: I really enjoyed reading your latest update. It sounds like really good news - We're happy about all the progress you've made and it is great that going back to work is "in the works". Life in the mountains is good - we've even had a rain storm that finally helped put out the Butte fire. Take care and give Miss A a hug from us.
Sharon and Pat Kelley
October 14, 2015
Zach, Loved your latest update! What a blessing to live in an area where good food is across the street. If I tried to go across the street for food, I think I'd be facing down the barrel of a shot gun (jkjk). I hope you are getting excited to have your own place again, and I cannot wait to see the new chair. Hopefully you guys can make it out here for the holidays. We love and miss you (almost birthday boy)!!
October 14, 2015
Zachy Poo, Decided to read and catch up on your latest. It's kind of awesome to read your thoughts and progress. Your reference to this being reality is so surreal... I still remember like yesterday the text I got from Jordan and just rushing up north. Look and u friggin thrive in the position you are in. Words can't express how proud I am of you and the progress you have made. Keep up the good work big bro.
September 18, 2015
Woo hoo! Upright Citizen! So glad you are out of rehab and back into the world!
September 15, 2015
Look at the progress you have made! I hope your writing down everything that's been happening in your journey for your book!
September 15, 2015
Yo--24 hours and yer mine!!! we have tons of housework for you to do, along with taking Nala for a 20 mile walk. Can't wait to have you back in the 'hood. Ciao, Amigo
sandy the task master
September 15, 2015
Hi Zach, Been thinking about you a lot. I'm glad to read you're making progress in rehab--wouldn't expect any less from you. Wish you another good week!
August 25, 2015
Hey Zach! We are thinking about you and wishing you well. We happy for your progress. Much love to you, Hanna and Sean
Hanna and Sean
August 25, 2015
Hey Zach! Love reading about the progress you're making in rehab! You have the right amount of dedication and motivation to get you through this and you have a team full of supporters there to cheer you on! Reading about your "first" shave and shower had me tearing up as well as I know I take things for granted everyday of my life and you've reminded me how fortunate I am - even though my shower this morning was on the cold side - UGH! Any who, I can't wait to be a part of another "first" for you when we finally all get to go to Shabu together - maybe as a celebratory event in your honor?!?! =) Take care Zach!
~Michelle and Nick
August 24, 2015
Zach, great news that you're in rehab now and thanks for the posting how things are going. It's good hear from you. Take care. You're in our thoughts and prayers every day. Hope to see you soon.
Sharon and Pat Kelley
August 24, 2015
Z-- So glad to see you are kicking rehab's a**! I am so very proud of you and you are truly an inspiration. Keep the progress posts coming. We all want to hear how wonderfully you are progressing.
August 24, 2015
Glad to see you are continuing to improve. Tie a few knots to your prayer quilt.
August 24, 2015
Chase and I are rooting for you from afar Zach! It is so inspiring to follow your story and we are excited for the new opportunities this rehab therapy will provide for you, YOU are an amazing person!
Ansley and Chase
August 20, 2015
They tried to make me go to rehab I said YAY! YAY! YAY!
August 20, 2015
So great to see you heading back to PT and with so much progress! Adryan and I are coordinating to get dinner with you guys soon, excited to see the new place as well! Keep it up, we are so proud of you!
Britt & Paul
August 17, 2015
Checking in. I never thought I'd be giddy at hearing someone say they're headed to rehab. It sounds like you're making huge progress. I'm SUPER proud! Shall I send a box of Didi Reese cookies again? Just text me the best address and I'll get em' in the mail. xoxoxo
August 17, 2015
Zach, Your latest post is a great example of your character, I felt very moved by your gumption and conviction. Will pray on that exoskeleton for you. Was thinking about that time you won that board game when me and Jason visited y'all in SLO ...I challenge you to a rematch! Wishing you a strong rehabilitation through this major transition in you and your loved ones' lives.
August 17, 2015
Zach- Every day you take greater and greater steps towards independence. I've loved watching you increase your strength, flexibility, and access to the world around you. I can't wait until we're back at our favorite restaurants and out exercising in the sun, window shopping and traveling the world. I love you and am more impressed with you now more then I ever before. Keep it up buddy, and get ready to go back to rehab!
August 13, 2015
I read your last update. Inspiring and informative. The challenges that you are going through - mind/body/spirit. They aren't for everyone in one lifetime. Usually I figure that people are asked to awaken and face things they never feel ready for. Yours happens to be a huge awakening. You will make some discoveries, have some setbacks but we are all here with you. I look forward to reading what kind of personal/professional and medical discoveries you and the world make about this injury. On your team because you are my chosen sisters partner. Rooting for you because you are doing the work daily. Best.
August 4, 2015
Zach, We had so much fun with you, Adryan, Sara and Bree last week watching the Giants game! So glad they pulled out a win! We will definitely need to do that again! Hope all is well - looking forward to the next update!
Michelle & Nicholas
August 4, 2015
Glad to hear you'll hopefully be heading back to PT soon! I wish you guys all the best in the move this upcoming week. Let me know what you think of the new hood!
July 22, 2015
Sending good thoughts your way. Miss you. Sending prayers. Just wanted you to know I think of your every day.
July 22, 2015
Just dropping by to say hello and wishing you the best in studying for your licensing exam.
July 22, 2015
Hi--even though I have the opportunity to see you every day, I want to use this forum to let others know how much I admire your patience, sweetness, and tenacity as you travel this rocky road called your life. You have made it so easy for us to help you when needed, and there has never been a bedpan flung in anger, or a vocal rejection of my mediocre meals. (Maybe someday there'll just be some righteous payback....) in any event, I am honored to be a part of your healing, and look forward to a few more Giants games together before we ship you back to summer camp.
One of your biggest fans, Sandy
July 22, 2015
Zach, I pray for you often! Reading your last update I am in awe of your strength and positivity. You are a rock star. And will always be Zachy Claus. We love you man!
July 18, 2015
Hi Zach, I work with your Mom (and love her). My husband is an RN also and used to work at Sierra Vista. We have both had surgery there and your Mom was our PACU RN. She was amazing and so perfect in her loving care at our worst moments. In a perfect world we give what we can and receive what we need. This is our tiny drop in the river of love that you travel upon. With hope that you receive all that heaven will allow,
Sheree and Tobias Brekke
July 18, 2015
Hey Zach, Love seeing all of the love and support, and hope all is well. We would love to bring by dinner again and watch the Giants! Went to a game this past weekend and thought of you. Keep strong, and sending positive vibes your way. See you soon!
Britt & Paul
July 16, 2015
Lucky 7s!!!!!!!!!!! You hit 7 grand!!!! Ahhhhh I'm either a voodoo priestess or we all love you or both!!!!
Liz (The Marie Louveau of Oakland)
July 13, 2015
Hi Zachary, I hope all is well. My son's family and I are heading to Colorado Springs tomorrow in his Tundra. An old girlfriend of mine married this very rich guy. He asked her to promise to burie him with ALL his money. She agreed. I met her after the old guy passed away and asked her about he promise. She said " yes I did. I withdrew all his money and put it in my account and wrote him a check!" See you soon
Uncle Greg, Greg Caron
July 13, 2015
Hey Zach, I hope you are doing better. I'm so happy you have such a strong support system. I'll never forget the kindness you demonstrated to me......particularly with your willingness to offer me your "ear" and "advice" when I needed it back during the good old CSUMB era. I know you have many more obstacles to face with this injury, but I'm glad to hear you are making strides towards independence and recovery. I always thought you were wise beyond your years pre onset of your accident....but I bet you're even wiser now. Take care.
July 10, 2015
Miss Liz, when you put good vibes into the universe, it WORKS! Thank you for sharing your humor and Irish luck with us poor Russians and Canadians; where would society be if not for people like you? Love you and thanks to everyone for the support mirth on this page! Keep it coming :-)
July 9, 2015
So I came up with a cool idea to donate seven dollars on the seventh week in the seventh Month of the year making May 7 a day of support and love!!! Lucky for YOU minimum donation is 10 so you get 2X7!!!!!! Let's get zach to 7,000 so my error is not in vain! He deserves love and support in multiples of 7!!!!! Do I hear 70? 700? 777? 7,000? :-)
July 9, 2015
hi Zach, We were out of the country when we first heard of your situation. We are praying for your recovery and although it will not be quick, don't stop believing. It will happen and you have many friends who are in your court and will help you every step of the way. We love you.
Sandra and Gerry Moneypenny
July 7, 2015
Z-- its great to hear you're getting used to whipping around in the wheelchair and are looking into cars. Ry's old wrestling coach had a hand-controlled corvette so keep that in mind as you look ;) Miss you like crazy. Go Giants! XOXO
Noelle, Ryan, Benny & Dex
July 7, 2015
Happy 4th of July Zack! Love seeing the progress you're making; it's truly amazing to see how optimistic and determined you've been throughout this recovery process! You have an army of supporters behind you and if there is anything Nick & I can do for you & Adryan we're just a phone call or text away! xoxo
July 7, 2015
Hey Zach, You may not remember me, but I was the paramedic from the 911 ambulance! I talked with you until the fire department showed up and I was the one that held onto your cell phone while everything was going on. After we got you out of the car, I rode with you in the back of the ambulance on the way to the hospital. I'm sure all you remember about the ambulance ride is me asking you a TON of questions. I have been to hundreds of car accident scenes but yours will always stick out in my mind. I remember how incredibly calm you were for the condition you were in. I'm glad I found this fundraiser site for you. I found myself wondering how you were doing after the accident, and I'm glad to see you're back at home. I know all those medical bills are no joke so I'm glad I could make a small donation. Keep pushin Zach!!
July 2, 2015
Zach, We tried to make a contribution online but it didn't like my visa number so I sent a check to the address listed. We are behind you and your recovery - keep up the good work. If you don't see the contribution come through, let us know. Happy Trails to you and Adryan.
Sharon and Pat Kelley
June 30, 2015
Zach! Congrats on all the little steps you've been making throughout everything, you are an extremely brave human and your spirit isn't garbage. A plan to visit during your "home hospital" time and bring you and A something tasty from the city is in the works! I'm glad you are in good hands (those silky hands being the ever-so-loving, accommodating and spicy, Adryan Caron), that your brains are working like the 4th of July and that you have been surrounded by friends and family since day one. See you soon, take care and I wish you the most progressive of recoveries.
Solitaire T. Miguel
June 30, 2015
Stay strong Zach..We pray that you have a full recovery and a wonderful life ahead..
Ralph & Linda McCornack
June 29, 2015
Zach, you are constantly in our thoughts and prayers for a great recovery. We enjoyed our visit the weekend of Mike's graduation party and hope to see you again soon. Give Miss A a hug from us,
Sharon and Pat Kelley
June 29, 2015
How is the prayer quilt working? Glad to see you are getting rid of the collar. Lots of good thoughts coming your way.
June 29, 2015
Zachy Pooooo!!!!! Getting some guns over there I see!!! That's good! Gotta keep it up! Pretty soon ull b able to lift urseld up
June 29, 2015
That is so awesome you have transitioned to a soft collar! Any improvement is huge! Stay strong and keep it up!!
June 29, 2015
Hey Zach, Glad I've got a forum to check in on your progress and drop you a line. Congrats on ditching the stiff neck brace, though I must say-- you did wear it with grace. It's the golden age of television, so I'd imagine you're catching up on your Netflix. I hear The Unstoppable Kimmy Schmidt is worth your time! Actually, you're clever and industrious so you're no doubt catching up on your reading too. I'll have more recommendations soon, and more cookies to follow. Keep chugging along!
Tatum & Craig
June 28, 2015
Zach: You rock (and use us; we're just down the street). Keep getting stronger! We love ya', Brian & Lea
Brian Greenberg & Lea Goldstein
June 28, 2015
Z-- just checking in to let you know we miss you and are thinking of you daily. It's been great to see your progress and we hope you get back to PT soon!! The dogs say ruff ruff!! Love you <3
N, R, B, & D Nelson
June 28, 2015
Zach i really enjoyed our talk right up to the dog and the skunk "communicating" see you Tuesday
June 28, 2015
It was so nice to see you last weekend. Through everything that has happened you are still the fun, kind, smart and funny dude my bestie fell for. So pleased to hear that the collar is off and that a good shave is now possible. Take care and sending healing thoughts your way!!!!
June 28, 2015
Thanks for sharing your fancy ice cream with me! Everyone has been so generous and creative with the get-well-soon gifts. I can't wait to see what they think of next....
June 28, 2015
Hey baby bro! We love you so much and are glad to see such amazing progress! Keep us posted. Let me know when you're ready for a visit from the little monsters.
June 28, 2015
Zach - hurry up and get better so I can whoop your ass...then we can chat about South Park like old times
June 28, 2015
Hi Zach, Im Stacie, Ren Herrings mom. I met you at CSUMB. :) years ago.... I hope this helps you.. I will be rooting for you during your recovery.. Big hugs from Bakersfield. Sincerely, :)
Stacie Gallegly (Ren's mom) :)
June 28, 2015
Stay strong Zach.. but not at scrabble (words with friends), you're too strong at that! Hope to make it out to Cali some time and attend another parade with you guys :)
June 28, 2015
You are my new awesome hero!! Sent with compassion and a new look at life, and of course love in there. If anybody can hang in there, you will. Mean it! Holly
June 28, 2015
We love you Zack! You're in our prayers... Feel better soon :)
Love, Greg and Clare (Teagle) Patterson
June 28, 2015
Hey Zachary, I know you don't remember me , I'm an old Pilgrim Pines friend. just know We are praying for a great recovery. May you keep smiling through this journey. God bless you and the family!
Suzee and John Moran
June 11, 2015
Wow, you never do anything the easy way do you. You are in our thoughts and prayers.
Andy and Val
June 11, 2015
Hang in there, Zach-- we are all thinking of you!
June 11, 2015
I am so sorry to hear that you were in an accident. I'm not sure if I have met you yet or not but I know Adryan through Danny/Char/Work and all I can say is that I will keep you both in my prayers and I admire your solidarity through this ordeal and am glad that you have each other because together, you can surmount any obstacle.
June 11, 2015
we love you Zach!
Jade, Seth, Brianna, and River ❤️
June 11, 2015
Hey Zach, So shocked and sorry to hear about your accident, but also glad to see your strength and resolve in full effect. I am sending you positive thoughts!
June 10, 2015
Zach, please believe all my prayers are with you on your road to recovery!!! We miss you at work!! See you soon! God bless you and Adryan! Love and blessings, Andrea from SART! ❤️❤️❤️❤️
June 10, 2015
Sending positive vibes to you and your loved ones. Paul and I will be by soon for a visit. Get well soon. Love you!
Britt & Paul
June 10, 2015
I love you so much Zach. I thank God every day that you're still with us, dry wit and all, and that I can still hold your hand, and you can hold mine. I can't wait to see your journey to recovery-I'll be there every step of the way.
June 10, 2015
Hey Zach, you got this! I remember as a kid there was nothing you couldn't do! Any challenge and you were always up for it!
June 10, 2015
I'm so proud of u Big Bro! U r so strong and have remained positive through all that's going on! U continue to impress me everyday, even with ur sense of humor
June 8, 2015
We love you so much Z and we are rooting for a quick recovery. Sending positive vibes your way always <3
Noelle, Ryan, Benny & Dex
Mail a Check
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Zach Kasow
Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road
Radnor, PA 19087