October 5, 2024
Well, what started as great momentum has taken an unfortunate turn. Most notably, my shoulder has become really problematic once again. For no apparent reason, the progress that was made earlier this year has nearly vanished. We'll be pursuing more invasive testing in the coming weeks... Hopefully, we'll have better information soon and be able to formulate a new plan for healing. Fingers crossed, on that front.We've also really struggled with the home modifications. After several visits with contractors, we still face pesky obstacles, either because of the construction we're starting with or because of the complex nature of what we need. I am certain that solutions exist... We just haven't found them yet. But we are intrepid! And we'll continue to address the various issues before us.On a happier note, I am bringing Caterpillar Soup back to the stage as our next fundraiser. Though it's been many years since I've performed it, I still get messages from folks who saw it, quoting lines and sharing the show's impact on their lives. It will be an honor for me to share it with audiences again. And for those not in the Los Angeles area, we'll be making a video of the current run available for on-demand streaming. I so hope you'll join us, one way or another.
May 20, 2024
In the last few months, your generous contributions to my fundraising campaign have facilitated some incredibly big rewards. I’m thrilled to report that my left shoulder, the worst area of my struggling body, has significantly improved! For the first time since Nov 2022, it seems possible that my shoulder could actually fully heal. This gives me so much hope and relief. While my insurance covers less than 30% of the cost of treatment, thanks to your generosity, I have been able to receive treatment regularly and expect to be able to continue until my treatment is complete. It feels truly miraculous.
Last time I wrote, I was still waiting to receive a custom power wheelchair from my insurance company... Well, it finally arrived, but it brought with it even more challenges than we anticipated. Unfortunately, much will have to be changed in our home for it to be truly functional.
Since the power chair won’t work for all circumstances, we will soon be purchasing a used SmartDrive (https://hub.permobil.com/smartdrive) thanks to your donations. The SmartDrive is a clever piece of technology that motorizes my manual chair. Once that purchase is made, I’ll be able to use the equipment that best suits my needs at any given time.
We have also been able to secure a new 14 ft. ramp at the entrance of our house which will allow me to enter and exit while riding in my new motorized wheelchairs. This means that I can use either chair independently outside my home which will go a long way toward protecting my arms and shoulders for the years to come. No more pushing myself manually across long distances or grinding up hills.
And best of all, we’ve just acquired a fully equipped customized van!
I had thought I’d only be able to be motorized part-time because I can’t independently transport motorized equipment in my sedan. (Imagine me trying to lift a huge, heavy electric wheelchair over my body to put it in the car. Just not possible!) But we found an excellent used van, already converted for accessibility, and a very generous donor from this community stepped forward to fund it! After many weeks of effort on many people’s parts, we picked up the van last Saturday!!
All of this feels extraordinary and almost impossible to believe. Dean and I have been overwhelmed by the love and support we’ve received. Thank you so much, again and again. Our gratitude is limitless.
So, what’s next? As wonderful as this progress is, there is still so much more to be done.
No matter what chair I’m in, we have no choice but to modify several rooms in the house, either for access or to reduce stress on my arms and shoulders. This includes the kitchen, one bathroom, my office and our bedroom. We also have to restructure the inside of our garage in order to accommodate the van and its ramp. This, of course, means more fundraising.
Our next online campaign will take place on May 31. You can help us by sharing our campaign when the time comes. And, of course, if you are in a position to donate on May 31, we will gratefully receive your contribution. Every dollar counts.
The last couple of years were among the most difficult years I can remember. I could hardly imagine ever meeting the needs of my increasing challenges. But your generous support has shown both me and Dean that amazing things are indeed possible. You have given us so much hope. Thank you, from the bottom of our hearts.
With love,
Lyena (and Dean!)
January 1, 2024
Much has changed since my last update. First, let me say THANK YOU for your generosity. Past donations have helped us cover more than $25,000 in annual medical supplies, medication, and care not covered by insurance, not to mention much larger periodic expenses for equipment, acute care, vehicle and home modifications. These are all standard spinal cord injury expenses and, without your support, the burden would be immense. Your gifts have made a tremendous difference, allowing me to remain in stable health, do valuable work, and enjoy life.
I wish I could end this update there and say that everything is remaining stable but, unfortunately, there have been some very challenging developments.
Last year, caring for my elderly mother after a bone-breaking fall pushed my arms and shoulders, worn from 20 years of wheeling, lifting, and caring for my paralyzed body, into a new reality. The damage causes chronic pain and severely limits my previous ability to do... well... everything.
This new reality necessitates a radical change in my lifestyle, in addition to extensive (and new) medical treatment. I'll be moving to a power wheelchair, which means retrofitting our house and acquiring a new vehicle, plus I'll need additional care at home. Thankfully, insurance has approved the custom powerchair, but everything else (including the medical treatment) is out of pocket. It's a whopper!
We haven't faced unexpected expenses of this magnitude since the very beginning of my injury. It's daunting and not just a little scary. But I know I'm not alone. And I hope that we can count on your support as we navigate these new waters.
I'll keep you updated as things unfold and, hopefully, celebrate the many miracles we achieve. Know that really nothing I am or do is possible without you. It sounds exaggerated but it's true. Community has always been my injury's greatest gift.
With love,
Lyena
November 29, 2017
HelpHOPELive has been a major force in my ability to live, work, and thrive with a spinal cord injury.
Even really good health insurance covers only a small fraction of the staggering lifelong cost of living with a spinal cord injury. Home and vehicle modifications, proper mobility devices, attendant care, and DAILY USE medical supplies are just a few of the expenses spinally injured folks have to bear largely on their own.
Help Hope Live provides financial support to people like me to cover these uninsured medical expenses.
Without Help Hope Live, and the generous contributions of donors like you, my life simply would not be possible. And the work I do coaching and inspiring others to use challenges as a catalyst for transformation would cease completely.
Thank you for your support!!
