When it’s about me, my eyes glaze over and I say, “Uhm…”

One of my lifetime companions is a neuromuscular disorder, spinal muscular atrophy. It started showing up when I was about nine months old, but I don’t remember much about that. I have never walked, haven’t stood since I was a tiny toddler. The wooden bars of my playpen provided the strength that the muscles didn’t.

I suppose that could be a metaphor for what I do in life. I make use of what is available to make up for what I can’t do for myself. My brain is my favorite tool and has allowed me to find many substitutes and allies.

Doctors have been predicting my death since I was two years old, so I outlived some of them. Since muscles are so important in breathing and mine are so weak, I have faced numerous bouts of pneumonia. Currently, my lung capacity is about one-quarter of what it would be for an average person of my height and weight. (It really puts a dent in my track and field career.) I treasure my air, and constantly try to find tools that will aid my respiration without taking away my ability to communicate. One tool that fits both of those requirements is the Pro-Bed Freedom Bed. It just comes with an impressive price tag.

I remember times before the Americans With Disabilities Act. An ophthalmologist I went to (once) didn’t want me in the waiting room because my wheelchair would put dents in his new carpet. I was able to warn friends about the kitchens in some restaurants because the front entrance only had steps without ramps. When I went to Disneyland, I was utterly crushed when I learned that I could not go on the JOURNEY THROUGH INNER SPACE ride because it was completely inaccessible. (I wanted to see what a water molecule would look like if you were tiny. And yes, I HAVE virtually ridden that ride on YouTube.)

One of my friends has described me as “restlessly and relentlessly curious.” I suppose that is true. While I can no longer hold paper books, my “To Read” list of books that I already have in various digital formats Is probably nearing 1000. And yes, I have read about two-thirds of them at least once. I can’t begin to categorize all of them. I pretty much read anything, including toothpaste tubes if nothing else is available.

I delight in studying theology and have become certified as a Lutheran deaconess—a mercy worker. Currently, I mostly volunteer. I do what I can to help teach others through Letter-writing, distance learning, praying, and encouraging here or there as I can. I help with my church’s website. I write and submit things, and not yet published (unless you count publishing on my website). Of course, I Used to be quite skilled in translating Klingon poetry, so maybe I am not always serious.

I do need to be serious now. I hope you know of someone who can help me earn what it takes to get my Pro Bed Freedom Bed. This tool will help my respiratory system and probably my circulatory system because it constantly moves and turns me so nothing puddles where it shouldn’t. When I have excess mucus in the lungs, it will let me go head down to slowly move everything out. It will let members of my family get more complete rest, instead of waking to turn me at 1 and 4 AM. Since it works with Alexa, I will even be able to make changes in my position myself!

I am raising money for the nonprofit Help Hope Live (In honor of Lisa Stapp: myself) to fund uninsured medical expenses associated with Catastrophic Illness.

I chose 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!