Almost four years ago, I woke up and could not feel my body. What would follow is a diagnosis of a rare autoimmune disease that would catastrophically change my life. The immediate onset of this disease, took away things I had previously taken for granted: my certainty in every step, my freedom of mobility, my self-esteem, my confidence, my career, my social life, and so much more.
I’ve come a long way through therapies, rebuilding where I’ve felt depleted. I’m finally at a point where I can safely set goals for independence and self-reliance, but that starts with a humble ask: help from my friends to support my desire to help me pay down some 20k in medical debt, and hopefully, help me procure/purchase a car with adaptive hand equipment that will enable me to drive once again. Regaining my ability to drive will allow me to leave my home, seek out work, see friends, grocery shop, and more.
Until now, I’ve relied on family and friends to do so much more than I’ve been able to reciprocate. I’d like to be able to get closer to where I was almost four years ago, and this is a big step for me in that direction. I am humbled to begin fundraising for medical debt, driving lessons, a car, and adaptive driving equipment through the charity Help Hope Live. We all need hope, and I didn’t have much for a very long time. Now I do, thanks in part to the support and motivation of those around me. If you are able to contribute any amount toward my campaign, you have my most sincere gratitude. Thank you!
Please feel free to visit my updates for my full story and notes throughout this fundraising journey.
Family and friends of Kara Toomey are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.
Kara has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
January 10, 2022
Hi all! I hope your holidays were all peaceful, cozy, and shared with your loved ones.
So much has been going on, I'm sorry I haven't written in a while. I NEED to send out a huge THANK YOU to those who donated on giving Tuesday. We raised almost $1,200 on that ONE day, and I remain unable to express even an ounce of my gratitude, properly.
I am also so thankful that work is going well, and I am once again taking on therapy clients, getting
to use my education. I need to take my LCSW exam, and am hoping to set a realistic time frame as to when I will be ready. Another couple of weeks back into the swing of things post holidays, I will have a good idea how much time I can put into studying per week, and guestimate how many study sessions I'll need from there. I'm definitely going to have to learn everything all over again! I'm feeling up to the challenge, and I'd love to shoot for mid spring to take the exam.
I'm feeling up to continuing overcoming challenges and scary things. So much of that self confidence is because of how you've all accepted me, supported me, and touched my heart in ways you'll never know.
I hope you're as ready to make this year full of new wins as I am. I know because of you, that ANYTHING is possible, and I'll be damned if I ever lose sight of that lesson. Go get 'em, tiger.
November 30, 2021
Today is Giving Tuesday, and I've got my Facebook fundraiser going strong! I was scared to do another fundraising push, as now that I'm working and have my car, it appears as if my goals have all been met. SO MANY of them have been met, directly in thanks to this organization, my sucking it up and asking for help, and all of YOU who have not only financially helped my "return to society", but have emotionally been there by signing this guest book, or liking my fundraising posts, who keep me going and motivated to do more and more with my new life.
Medical debt, outrageous copays for infusions, prescriptions, & insurance premiums still loom overhead, like a book report due yesterday.
Unlike the book report, I KNOW we can tackle this project and get it done with flying colors. Hell....look how far we've already come!!
I'll keep watching my fundraiser today, and my heart will continue to grow like the Grinch's on Christmas morning, with every donation, like, and message of support. Thank you for all of it. Thank you. ✌️
October 18, 2021
Guys. It happened, and I took my maiden voyage on 128 in almost rush hour traffic, last Wednesday. I blared the music and sang at the top of my lungs, maybe got the push/pull thing confused a couple of times, and definitely felt like I was in dream.
This all feels like such a dream; I had/have a need for transportation and medical bills, and people I don't even know have come through with others I've reunited with, to work towards making these dreams a reality. This is all far too amazing to describe now. All I know is that I'm thrilled to be back on the road, tasting some long gone, now reclaimed, and never forgotten freedom. Thank you to all of you here, you mean more to me than you can ever know. ✌️
October 4, 2021
Thanks to all of the donations I've received, throughout the year, and to some quick fire fundraising, I am astonished to announce that I will be picking up my Jeep Renegade, retrofitted and all, this coming Wednesday!
My parents will be going down to one car, and allowed me to use my mother's car a trade-in. Then, using funds from all of you, I was able to make a good down payment so that I have a low monthly lease payment, and was able to pay for the retrofitting outright. The feeling I got when I received an email letting me know that the checks were in the mail, was and still is absolutely indescribable. I am on the precipice of regaining SO MUCH FREEDOM.
As excited as that makes me, I'm also nervous about the responsibility both financially, and more importantly, the responsibility to continue to grow, and work towards my goals, and....to do right by all who have quite literally invested in me.
I promised all of you at the beginning of my venture that I would always do my best to make you feel proud to have helped me get back up. Thus far, I know I've done my best to hold up my end of the bargain. I will work my butt off to continue to make you proud, as you well know there are not enough words to express how grateful I am, so I'll just have to show you. I hope you come along for the (bright, new and shiny) ride! ✌️
August 14, 2021
I began a part time job last week! I am currently working 14 hours/week, as a receptionist at a therapy/psychiatric office that specializes in addiction therapy. So far I am absolutely LOVING it! I have already been offered more hours, and even a position as a therapist, as I have my Masters in social work. This is an incredible feeling, and although my body is exhausted and sore, my soul is energized simply by being back out in society.
2020 was a terrible year, all around. For me, it wasn't as hard as it was for everyone else. I've been "quarantining" since I became disabled. Except for doctor appointments, and a very rare occasion, I don't leave the house. I have essentially been homebound for 4 years. Remember the first time you went to a gathering, or saw a friend after quarantine, and how good it felt? Imagine now, how good that reunion would have felt if it had been 4 years, rather than one we've just gone through.
That energy pumping through my veins has the most uplifting and hopeful effect on my soul. It calms me, and lets me know that I'm going to be ok. My body may fail me again, that's true. How will I deal with my quarantine then?
I don't have any of the answers, let alone ALL of the answers. All I know, is that I never in a million years, thought I would be so happy to answer a phone, as I am at my job. Going from not being able to get myself dressed without crying and needing help to working 14 hours a week, had given me a bit of perspective on that one.
Currently, my parents are driving me to and from work while I raise funds for my own transportation. I am going to a dealership this week. My mom and dad have decided to go down to one car, in order to help me get a car. If my mother gifts me her car, I may be able to trade hers in, with some money from this campaign for something that suits my needs (SUV), can be retrofitted, and can fit into my budget. I wouldn't even be able to think about going to dealership if it weren't for all of you.
So much of this is due to all of you. I am doing my best to honor you and your support, by working to be the best me I can be. It's a big job....but....I'm working on it! ✌️
July 27, 2021
Infusion day! Thankful for good medicine, and the people who know how to treat what ails me.
I have been thinking a lot about the past 4 years, as I near the anniversary of when this all began, August 6th, 2017. Four years is a long time. I must admit, I've been quite melancholy dwelling on how I feel I've lost 4 years of my life. The thoughts of what could have been, where I could be now, how hard it will continue to be as I work to re-release myself in some capacity back into the wild, can be intensely and solemnly overwhelming. I feel as though I am still grieving that loss, and I'm not quite sure how to reconcile all of the "could have beens" with where I am now.
I am incredibly excited about what I have accomplished and overcome since this began. I have found friends in the most unexpected places, I have seen my family come together to give and do anything and everything they can to support me. I feel as I have morphed into feeling more like myself, and knowing exactly who that is, than I ever have before. I have learned lessons of compassion, vulnerability, and strength from within that I never knew existed. I've learned that people can be downright cruel, rude, and have a complete lack of understanding as to what it's like to maneuver this world with a disability/chronic disease. I have felt judged and pitied. I've felt like an afterthought. I have made and allowed myself feel emotionally weak, hopeless, lazy, incompetent, and unworthy of advocating for. And, I have found that being disabled/sick can be an extremely lonely existence, no matter what online community you build and/or belong to.
In spite of all of the negatives, I am still more thankful to have met the woman I am now, than I am heartbroken that this has happened to me. I wouldn't have met her, if I had not been thrown this curve ball, and for that, I'm grateful. This doesn't mean I'm done mourning the loss of "what could have been", I'm sure that will haunt me at different times of my life, in different ways. Grief is like that; it's not a lateral process through the stages.
What will help me combat that grief though, is this online community, working towards rebuilding a life the way I desire, and knowing that I am emotionally stronger than I ever have been before. I wouldn't have learned how to be so strong and steadfast in my desire to do more with my life, if I hadn't experienced what I have. No matter what "could've been", finding myself and learning to make it work no matter how hard it is, will always make it worth it. ✌️
June 24, 2021
I GOT MY LICENSE TODAY!!!! Guys, this would not have happened if it were not for all of your love and support. None of it. I cannot believe how far I've come. It's overwhelming to think about, honestly. To have worked on picking up nickels off a counter, to being able to drive with hand controls.....it's completely overwhelming.
I still have a ways to go before I can get on the road, and pay off my medical debt, but, today.....TODAY I GOT MY LICENSE!!
Thank you to all, for helping this amazing dream come true. ✌️
June 5, 2021
The whoopie pie campaign went live last week, and I've been so excited as to how well it's been going so far! I made 42 whoopie pies today! It's a blessing in so many ways.
The fact that people have enough faith in me, to spend their money on a product they have no guarantee they'll like, is mind blowing in and of itself. Then, realizing that I alone, with no help, was able to crank out 42 whoopie pies, in 4 different flavors...well, that's just insane to me. I couldn't hold a cup to my own mouth 3 years ago. Now, I am able to do my laundry, make whoopie pies, shower using the chair less and less....the progress is astounding.
This is why I'm asking for help. I am making such great physical gains, as compared to where I was, and I want to be able to continue my forward momentum financially, and hopefully literally, with a car.
I baked 42 whoopie pies today. I'm in a ton of pain, and I'm sure my body will take a beat to recover, but I did it.
Thank you for being here. Thank you for supporting my fundraiser. And thanks for helping me prove to myself that I could, in fact, get the job done.
Enjoy the whoopies....I'm trying not to taste test too many, but I hope they pass your taste bud's test!
May 22, 2021
With the 5k just about a week behind us, I have had a lot of time to process how I got "here". As you might imagine, that line of thought sends me down a wormhole of memories, all the way back to waking up that first morning, paralyzed. It's kind of like the boat scene in the original "Willy Wonka and the Chocolate Factory", that's somewhat scary, and Gene Wilder is singing the creepy melody, you with me? My montage is of tests, PT, more tests, drug reactions, not returning to work, not being able to see my niece's Christmas show because I couldn't do stairs, missing my nephew's cross country meets....it's a pretty scary ride traveling down the path that brings me to having to fundraise to afford such basic things as healthcare.
HOWEVER, as tired as I've been since the 5k, I still did it. That flip of the switch, leads me down a much more amazing path full of badass victories, a bounty of lessons I needed to learn, rekindled friendships, unconditional love and support, and so much more amazingness than the other path. It serves me with an immensely more positive impact, than does the other path.
We all choose which path we want to go down at any given point of any given day; do you use negative or positive history to inform your decisions/actions/feelings? I can't pinpoint exactly when I stopped choosing the bad path to go down. It's been a long process. I lost A LOT when I got sick and became disabled. I had a lot of grieving to do. I couldn't think of doing a .5k, learning how to work out, or the future at all....in my perception at that time, there was no future. I'd lost everything, the rest would be me just....breathing, really. I can't call it living, what I was doing. Surviving, is pushing it too. I was breathing...barely. But again, bad path. I had to go through the "barely breathing" part of grief, in order to get where I am today. And, yeah, sitting in sweats tucked into hospital socks isn't exactly glamorous, but, after changing my bed, a workout, a shower without the shower chair, and an SVU marathon on...it's a hell of a lot better than barely breathing.
So, thank you for being here with me. Your support has an impact on me, beyond my writing capabilities. Thank you for donating and doing the 5k with me. Thank you for making it easier to breathe, and for making the awesome path that much easier to choose each and every day.
I hope you can see the video below of the .5k I did. If not, come join my group "Effecting Change for the Better" on Fb! Whatever you do....choose the path that reminds you of your badassery, over your missteps, every single time.
April 27, 2021
My dad began his career as a door-to-door insurance salesman. He'd sit in his office, making cold calls, and for every hundred calls he'd make, he'd get very few in person appointments. He recalls many of his early sales calls and how horrible they were, including hearing one of his "clients" and their family, laughing behind the door as he knocked, hoping to come in and close a sale.
It seemed only fitting that my dad would be the one behind the wheel as I cold-called car dealerships, hoping to make that elusive "sale" today. I put together packets including letters from Help Hope Live stating that we are working together, their IRS non-profit status, a driving evaluation and equipment reccomendations from my driving instructor, and a personalized card I've had made with my campaign info on it. Putting together papers is easy. Getting to the meat of my ask, succinctly, with a flare of humor, exuding tonnes of humility, while attempting to also feign that I actually have the confidence to do this....well, it felt damn near impossible.
We went to two places today. The first place, once told what I was there for, the manager sent the salesman back to me and told me to leave my papers. I didn't feel like this was a good idea. And although I KNOW it's a 1/10000000 chance I'd even get help or a car, you just never know. So, we went to another place. As I barreled through the heavy pull door, a giant gust of wind came and took my packet with it, and I caught the eye of a salesman. He tried to help me, but I'd recovered by the time he got to me. We were laughing, and his manager came right over when he heard what I was there about. He asked questions about my disease, my life now, and seemed genuinely interested. I left there feeling seen. I probably won't get a car, but they saw me.
We only went to those two places today, as I have one other piece of material to add to my packet. I'm terrified to go back out. It's insane, isn't it? Me, going to a dealership, and asking for a car because I became disabled? I mean, that's insane. I'm aware. However, even begining my fundraiser seemed (and still seems) insane. Every single time I post about it, I cringe, then imagine how my dad felt hearing his "client" laughing at him from behind the door. It's a valid comparison; he was trying to secure his (and his family's) future, and so am I.
So, there are two takeaways from today's experience. The first is that I hate fundraising for myself. I feel I've made that clear, but just to clarify, it feels AWFUL to HAVE to ask for help. I know I'm doing the right thing, but it doesn't make me feel GOOD about doing it. The second, and *hopefully* more important takeaway from today, is that being seen and feeling like someone really sees you, feels amazing. We all want that. We all need that. It helps us grow as people when we know that others see us.....especially when they GENTLY point out the not-so-good things they see.
I'm not looking forward to going out and doing more cold-calling. I am looking forward to spending more time with "the dad", channeling his courage when I do, and continuing to do my best to see people for who they are, and pray that others (like all of you have) return the kindness.
April 21, 2021
Just wanted to drop a quick note that I have created a team to participate in a virtual 5k, on Sunday, May 16th. I am committing to doing a .5k of my own, and I'd love it if you joined my team, "We've Got This", help me continue to get closer to my goals, and get a stellar t-shirt! Join us here, or register on the home page fory team!! raceroster.com
April 16, 2021
Hi all! Thought I added this on April 1st, but I guess I didn't update it! Here is how the cupcake campaign went!!
Happy April, gang! The cupcake sale officially closed out yesterday. Thanks to all of you, it raised almost $400, and I put over 150 cupcakes into tummies! (Not personally...I let people feed themselves.) I am so grateful for all of the orders, and continued support. This has been an amazing ride so far!
I am looking forward to a whoopie pie sale for graduation season (filling colored to school colors), fourth of July.... hopefully for most of the summer. And BONUS: whoopie pies can be shipped!
So, thank you so much for keeping me motivated, for moving me closer to reaching my goals, and most of all for being here. You mean more to me than you could ever know. ✌️
March 19, 2021
There is so much to catch you up on, it's been a wonderful whirlwind of a week or so!! First, the cupcake sale has been wildly successful, if I do say so myself. I never imagined I'd have even a couple of orders, let alone three dozen cupcakes going out the day before and on St Patrick's day! It has been such a rewarding experience. Not only does it feel great to have people say they liked my cupcakes, but meeting the people as we did a safe pickup was so great. It was wonderful to put names to the faces of people who, out of the kindness of their hearts (and a desire for to-die-for cream cheese frosting), ordered to support my cause. It was amazing.
Secondly, I DROVE YESTERDAY!!! I had received my learner's permit in the mail, and my driving instructor and I had made appointments starting March 31st. She sent me a text Wednesday night, asking me if I could do the next day. YES. YES. YES. Anything else on the schedule (there wasn't anything) can wait. I'm getting behind the wheel of a car for the first time in three and a half years. YES!!!
My whole body is still buzzing from the experience, the thrill, the glimpse of independence. I'm exhausted from remembering how not all that long ago, I did not have any hope that a day like yesterday would ever happen.
So man....what a week. Dozens of cupcakes for friends and supporters all around, my first driving lesson, and....my 43 birthday. I could do without the advanced age of the latter, but, getting behind the wheel on the day of my birth, seemed incredibly fitting.
Thanks for everything tribe. Your support means the absolute world to me.
March 7, 2021
I'm about a week and a half into my cupcake fundraiser, and I am thrilled with how it's going so far! I have already gotten and fulfilled several dozen orders! I have also posted fliers around my apartment complex with the help of management, and some local businesses, with the persuasion of some cupcakes! It feels so good to give back, even in this small way. It feels good to challenge my body even on hard days, and pull up a stool to the counter if need be to get the frosting finished. It feels great.
I am looking forward to getting more cupcakes into tummies as St. Patrick's day approaches, and my recipe continues to improve! I look forward to continuing to find ways to give back to all of those who support me.
In other big news this week, I passed my written permit exam!! I am waiting on the physical permit in the mail, and then, due to a private donor, I can work with a driving school. I am beyond thrilled to begin this part of my "comeback"; and yeah...that's exactly what I'm calling it!!
February 25, 2021
I've just shared my first post about the St. Patrick's Day Cupcake fundraiser on social media. I always get so nervous when beginning a new push for fundraising. I worry that I'm asking to much, I worry that it will not be well received, I worry that I'll get to many orders and my cupcakes maybe aren't really that good....I get nervous!!
This time however, I have a little history sharing a fundraiser I'm nervous about, crossing my fingers, and being blown away by the beautiful outpouring of human kindness that followed. So, as nervous as I am tonight about the launch, and as tightly crossed as my fingers may be right now, I am cautiously optimistic that I will be up to my elbows in batter and frosting before too long!!!
January 28, 2021
I just this second, wrote the last "thank you card" on a very long list, that unbelievably keeps growing, from the very first donation, to the most recent. Each card I wrote, made me feel like the grinch, as his heart outgrew his chest. The gratitude clumsily fell through each card, as I worked to express this new feeling I have. The donations, the private messages, the guest book signatures and messages of support, have all given me a an emotion I've never felt before. It's gratitude, yes, but it's so much more than that. It's encouragement, and support, understanding and desire to help. It makes me to want to do right by all of you, and do the absolute best to become who and what I am supposed to be. It gives me strength. It gives me humility, and vulnerability. It revitalizes my desire to live the fullest life that I am capable of. It gives me joy. It gives me hope.
I know I've said it before, but PLEASE know how deeply and truly I mean, that "thank you", isn't even the tip of the iceberg.
Thank you all so very much, nonetheless.
December 30, 2020
I have 2, low-dose chemo infusions, every four months to keep my symptoms away (excruciating pain, difficulty ambulating), and to suppress my immune system from attacking itself futher. I had my first infusion of two for the month, yesterday. I brought my stack of thank you cards with me, as the six hour infusion can get BORING (and, I really wanted to get them out).
I cannot tell you how long it took for me to be able to put pen to paper. I had NO idea how to write "thank you", and have it feel like an appropriate and big enough sentiment to use for how I feel. I cannot express how overwhelmed I am by all of the support you have given me. Not just with your donations, but the emotional support that I feel everytime yes, someone financially donates, but everytime someone shares the campaign, or likes a post about the campaign that I share...it's an outstanding feeling.
This support emboldens me to keep going. It helps me know that I'm moving in the right direction and that you support that course. It touches my heart, in the deepest, most meaningful way..it warms me.
So, when you get a "thank you" card from me, please know, I don't know that I'll ever have the words to express how much this has meant to me, but I know that "thank you", doesn't even come close to covering it.
December 24, 2020
Singing this song in church every year on Christmas Eve during the offertory, was a tradition I was honored to have. This entire year, it seems everyone has needed something; money, support, love, health, a HUG..something. The good thing about this year, is that, just like at Peace Lutheran during the offertory, people gave what they could. It may not seem like there is much to be thankful for after this year, but look closer. People really have come together to help, in whatever way they can, to try and make things better for someone else. It's a beautiful thing to see. So, with some nostalgia, some hope for good things to come, and some Christmas spirit, I hope you enjoy my offering.
December 19, 2020
Hi help hope live family! I hope this update finds you well, if not just a touch stressed about the holidays!
I wanted to drop a quick note to the newcomers, to welcome you all into my story, and my life. My story was recently picked up by a local news source, and I'm blown away by the people I have heard from, as a direct result of the press. I am being interviewed by another source this week, and am hoping that my story is read as one of hope, determination, and a reminder of all the good there is in this world; no matter how hard it may be to find sometimes. There is so much good here.
Please, make yourselves at home here, by reading my updates, goals, how far I've already come, and where I want to go from here. Thank you for your support. Thank you for taking the time to even peek at my story, thank you for being you.
Please feel free to join my FB page dedicated to education, awareness, support, and yes...my story. Really though, my true goal is to make this world better for those with disabilities. That's the goal. So if you can't afford to donate...that is A-Ok. I would ask though, that your eyes begin to see the world from a disabled persons standpoint. Can they maneuver your world as well as you can? If the answer is no....let's fix it. That's really my biggest goal of all.
Thank you again for your support and time. I'm beyond thankful for all of you, in the millions of ways that you've all helped me so far.
December 7, 2020
I hope your transition into December and the full swing of the holiday season has been as smooth as it can be, in these different times! We got some snow here around Boston this past weekend, and it definitely got me "in the spirit".
For me, part of being "in the spirit", includes my desire to do good anywhere I can, for anyone I can. Financially being pretty strained definitely limits the ways that I can do good; so does covid, so does my disability. We all have a million reasons as to why we can't help, and a lot of them are extremely valid. That's ok. Doing good doesn't have to cost us a thing. It's letting someone know their hair looks good, or they're rocking an outfit. Little acts of kindness are available for us to dispense into the world as we go. Here are all of the ways that I have been helped so far by all of YOUR not-so-little acts of kindness:
I now have enough money to get on the road with a driving instructor. I am waiting on the last bit of paperwork from my PCP, and will then head to the RMV to request a hearing so that I can get my permit. (I need a hearing, as my license was medically suspended, and they need to make sure I didn't have any accidents due to my disability before it was suspended-i didn't...as it happened over night, and I haven't gotten back behind the wheel since).
Also, I have some donations left over once that is paid for, to help start paying off some debt, as for the moment, I can afford my health insurance.
A LOT of good has happened here. Between the FB fundraiser that raised almost $800 and the current total here, the total amount of good that is happening is overwhelming.
There’s a way to go yet…but when I really look at the donations, and the engagement with my community, complete strangers, and childhood friends that I haven’t heard from in years, I’m immediately lifted from my self-doubt.
So while we prepare for the holidays, a new year, and that giving desire that tends to hit at this time of year, I need again to say thank you. I don't know how I'm going to give back yet. I'm not sure I can ever repay such kindness. I can keep working towards my goals of driving, working, getting rid of medical debt, making music, and living a meaningful life that hopefully inspires people to do good.
Frost's poem comes to mind as I look to an amazing future that I know I'm meant to have. I don't know exactly what I can promise at the moment, but I know whatever I end up doing will be for the greater good. I've seen too much to go back to my former status quo.
So, thank you for being here.
I hope you find your "giving spirit", and that it guides you to whatever you're most passionate about.
"The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep."
December 3, 2020
Hi all! Here is a link to a few songs I did on the Socially Distant Fest, FB page, in thanks of all the wonderful donations we were able to raise for Help Hope Live yesterday. I hope you take a second to check it out!!
Thank you for all of your love and continued support. I'm blown away.
November 22, 2020
It has been a little over a week since I posted my campaign. I've got to tell you how truly in awe I am of the support I have gotten so far. It has been an amazing experience to see messages of love and support from elementary school friends, to people I've never even met. I am feeling unbelievably blessed.
I have decided to add a financial goal for the campaign. It has been really hard figuring out a number, for many reasons. One, it's a lot. I'm asking for a lot of help, and it feels uncomfortable. Two, it's seems so selfish to ask for so much, and not have anything to give back in return. Three, and really the crux of the issue; I don't want/like to admit how great my need really is. To others, but especially myself.
Denise, my coordinator, helped put my "ask" into perspective. She reminded me I don't have a car to retrofit, should I be able to get my license. That I have over 18k left of medical debt from my second opinion at the Mayo Clinic (that "surprise!"wasn't covered"). She reminded me how large a percentage my out of pocket insurance costs were as compared to my yearly net income. She reminded me of the last fact, before I got a letter (and subsequent phone call) stating that my health insurance will be increasing so much next year, that it will eat up 45-50% of my disability income. 45-50% of my net income will go to private insurance, so that I can see the doctors I need to see.
With all of that information finally settled in my brain, I am setting a goal of $50,000. It sounds insane. This all sounds insane. But we're doing it.
I am grateful beyond words for you spending a piece of your day here with me.
November 16, 2020
"So...what actually happened?",is a question I've gotten used to fielding. Saying it's complicated, is quite an understatement. This is the best way I currently know how, to fill you in:
On August 4th, 2017, I woke up and immediately realized something was wrong. I couldn't move my arms and legs, and all I could feel was pain.
I was rushed to the hospital, and was having a spinal tap within minutes of getting to the ER. After months of hospital and physical rehabilitation hospitals, I had a diagnosis; autonomic sensory ganglionopathy. Meaning, an unknown autoimmune disease had attacked the ganglion nerve head, both damaging, and killing some of the nerves that go to my arms/hands and legs/feet. I could still move my extremities, but I could not feel HOW I was moving them. I was still strong, and physically capable of walking, but the nerve damage made it impossible for me to move and trust my legs/feet. I KNEW how to grab a cup to pick it up, but I couldn't tell my hands how to DO it. I knew where my hands should go on the piano and how hard they should strike, but my fingers were bricks and feathers all at once.
Suddenly losing everything that I had worked so hard for (career and apartment I LOVED, car, playing/singing music, independence), has been a struggle to say the least. However, I have worked tirelessly, even going to the Mayo clinic for a second opinion (on my own dime), trying to figure out what's going on with my body...and really trying to come to terms with my new life as someone with disabilities.
Creating a Facebook page about my disability, has been one of the most helpful things I've done since getting sick. I did not create this page until one and a half years after I got sick. I wasn't ready to share my story with anyone. However, during my return flight from the Mayo Clinic, I traveled alone, and could not believe how hard it was to travel with a disability period, let alone, doing it alone. I hemmed and hawed about sharing the experience. It was not until I emotionally needed more positive energy in my life, that I decided I needed to flip the script. I needed to make it less about ME, and more about acceptance and self-love, noticing how others are treated and doing your best to always give people the best "you" that you possibly can. It's really about how we can effect change in order to make life with a disability not only manageable, but to make it easier to live a MEANINGFUL, FULFILLING life as well. Through my amazing community of friends, family, and people I've never met, I have gone from experiencing what can be a really lonely world for those with disabilities, to having over 300 really amazing people who have my back. They support me. They also truly share my passion for equality and opportunity for all.
Donations will help me to obtain my goal of driving again, as instruction, retrofitting with hand controls, etc., gets expensive. Driving again would allow me to take back a MASSIVE amount of the independence that was taken from me. It would also give my parents a well deserved break. Donations will also help me to pay for my out-of-pocket insurance costs. Lightening the load of the cost that carrying private insurance, because Medicare doesn't cover my specialists (and...you probably didn't recognize my diagnosis,so I need specialists), would allow...well, down the road, it would mean as much as not having to choose between rent, and insurance. I'm lucky enough to be able to live with my parents right now.
Hopefully just reading my story is a positive experience for all who visit this page. Yes, I want my freedom back by being able to get on the road! But that's only part of the work. I want to spread awareness as to how unsure, living with a disability can be. Right now, the world is a really hard place to move through if you are disabled. There are still so many barriers to attaining full inclusivity. I want to encourage everyone to get involved at your local level to get those cracks in the sidewalks fixed for wheelchair users, and to look at the world around you to find ways to make it better for everyone. Yes, these donations are helping me personally, but the rest of the story is about creating positive change wherever you can.
And feel free to join my FB group, we'd love to have you!
November 14, 2020
If you're here, it's probably because you know I finally posted my campaign. I currently don't have adequate words, to express how humbled, and gracious I am for the mind-blowing amount of support I have received thus far. I have heard from childhood friends, family, strangers, people I had no idea were following my story on FB, all took this opportunity to show me how much they care. People have shared my campaign, even if they can't contribute, they've shared it in hopes that others can. I truly cannot express my gratitude. I won't ever be able to.
What I can do, is continue to move forward. I can promise that every move I make, will be one that brings me closer to being the best person I can be. I can promise that I will ALWAYS be an advocate for those with disabilities, and that I will work to make things better....somehow. That's my goal. I want to make the world as equally navigable for everyone, as it was for me before I became disabled.
I don't know how to do all of the things that I want to do, to help that goal come to life. What I do know, two days after launching my campaign, is that I am closer to making that happen, than I have ever been. Human kindness is overflowing. And humbling.
Thank you. From the bottom of my heart, thank you.
November 5, 2020
This is my initial update, as my page just went "live". I wanted to document the first time I wrote here, as I'm not even sure yet if I will actually go live with this fundraising effort. I'm extremely uncomfortable with the idea that I'm asking for money. I'd honestly never even really considered it (even after I ended up paying out of pocket for all of the mayo clinic testing/visits). It wasn't until the instructor with whom I'll be working on my road hours to get my driver's license, mentioned helphopelive as a way to possibly find some funds for the at least 3k it will cost to get me back on the road (sans actual car), that I change my mind.
I wasn't really comfortable with becoming disabled overnight either. But..here we are. I miss PLENTY from my "old" life. But, I don't have any regrets as to how my LIFE being dramatically changed, led to ME becoming dramatically changed. I've learned lessons I needed to learn. I may never have learned them, had my life not gone the way it has. I've stumbled along the way, hell, I've downright fallen flat on my face (figuratively, and literally), but...the getting back up part...I'll never regret having learned how strong I am. Ever.
I'm betting I won't have regrets about asking for help, either.
IT still remains to be when I will actually share this effort with other humans....but I'm pretty sure, that when I do finally allow myself to share my goals with others, everything is going to be just fine.
"You miss 100% if the shots you don't take". (what can I say....I'm a Boston girl)
Thanks to being here.
Photo Galleries (1)
November 29, 2022
Kara: you inspire me and so many others daily with your perseverance, grit, and humor. Love ya.
November 26, 2022
Always a supporter of this great cause!
September 4, 2021
You rock, Toomster! Love and miss you.
Kristen Miller Gavazza
September 3, 2021
August 18, 2021
Proud of you Kara! Hope to see you driving on the road soon (so I can make obscene gestures at you!) ;-)
August 5, 2021
TO Kara Toomey,
You shared your story with me one day in the office on Mill Street. I was impressed with your courage in pain, strength and inspiration to carry on through very, very difficult obstacles placed in your path.
It is my hope that science will someday find cures for all diseases, especially catastrophic ones.
Marcia Dunham (formerly of All American Self Storage)
June 7, 2021
Cheering you on Kara. Sending love to a strong, talented, amazing woman! ♥️
Jill Marcus Smith
January 15, 2021
WE HAVE ALWAYS BEEN HONORED TO CALL YOU OUR FRIEND AND ARE IN SUCH AWE OF WHAT YOU HAVE GONE THOUGH AND OVERCOME. YOU ARE LOVED FRIEND.
YOU WILL NEVER WALK DOWN THAT “LONESOME ROAD ALL BY YOURSELF”. WE LOVE YOU KJT!!
Keita and Emily Matsumoto
January 10, 2021
Love and prayers go out to you Kara! Always pray for miracles xo
January 4, 2021
I know that beautiful voice! Wonderful to hear it here.
I didn\'t know about your illness, but the Natick Patch gave me the heads up. What courage and strength you have! Love to you and your terrific family.
December 31, 2020
Hoping you reach all your goals! I used to live in Wayland and remember your family.
December 31, 2020
Good luck Kara!
Rob & Mary Schofield
December 27, 2020
If anyone can beat this, Kara, it is you! I loved hearing your Oh Holy Night - beautiful. Keep singing; the vibrations help the body heal.
Diane Muffitt (WMS band)
December 27, 2020
You are a fighter and an inspiration! I hope I pass you on the road soon.
December 27, 2020
You are amazing! <3
December 27, 2020
Kara- wow, your story is encouraging. Praying for good things to come in the New Year for you.
December 26, 2020
Thinking of you- Steven and Judy
December 21, 2020
Good luck Kara from all the Doran’s.
December 18, 2020
Love you, Kara! x
December 15, 2020
December 7, 2020
Love the leather leggings! Get it, girl!
December 2, 2020
My best wishes Kara to when you\'re up and about on your own and singing happy tunes.
December 1, 2020
Wishing you best of luck on your campaign and all good things in the future.
Marcia Rosenthal and Bill Minichiello
December 1, 2020
What wonderful news - soon be driving again! Best wishes for a great fundraiser.
Love and blessings, Heather
December 1, 2020
My sister Heather told me about your possibility of driving and your fundraising so I asked her to donate for me. I look forward to seeing you next year when I can hopefully come over for another holiday from New Zealand. Sarah
November 18, 2020
For all the pleasure I've been having listening to Kara sing during the pandemic, I feel like we should give more! Hopefully will repeat. I have memories from her college days with my daughter in Boston. Mostly hilarious.
November 16, 2020
Sending our love, Lauren & Joe
November 16, 2020
Kara, your posts are inspiring! I hadn't known about your illness, and from what you've said here I'm just floored. Sending my best to you and your family :)
November 15, 2020
You are amazing!!!!! Glad to help!!
November 14, 2020
So proud of you, cousin! You are an amazing person and I’m very happy you are pushing through this illness and all it’s thrown at you. A true fighter!!
November 14, 2020
You’ve got this, Kara! Stay positive and know that so many people support you!
November 13, 2020
Happy for this huge milestone in your life!!
Joyce & Joe
November 13, 2020
What a great organization! Good luck, Kara.
November 12, 2020
Love you Kara ❤️
November 12, 2020
Thinking of you!
November 12, 2020
You are an inspiration, KT! Xoxo
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Help Hope Live
Note in memo:
In honor of Kara Toomey
Help Hope Live
2 Radnor Corporate Center
100 Matsonford Road
Radnor, PA 19087
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