I try to be thankful every day, but at Thanksgiving, I try extra hard. A couple years ago, my grandma had our entire family write things we were thankful for on plastic pumpkins. While my cousins wrote what seemed like a paragraph on theirs, I simply wrote, “Ibuprofen, the fam, and football.” Concise and still applicable today.
This year, however, I thought I’d go into more detail about the things I’m most thankful for. There are many general things I’m thankful for, such as water, food, shelter, and the country. But I wanted to make a more personalized list.
1. Three-fingered Jack
I have to start by mentioning my JACO robotic arm, “Jack,” which is by far the best piece of assistive technology I’ve ever acquired. I’d estimate that about 80 percent of what I do with Jack is drink. Don’t worry, I don’t drink and drive — usually.
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While 80 percent may seem like a usage imbalance, you should realize just how amazing it is to be able to drink what I want, how I want, when I want. Prior to Jack, drinking anything consisted of either someone helping me or a plastic cup with a lid and straw teetering precariously on the edge of my harness.
Now, I have a much wider selection of cups. I can actually drink from a mug or water bottle. It’s not only a matter of convenience but also I’m more hydrated now. The $53,000 price tag was daunting, but I raised it in a couple of months, and for that, I’m so thankful.
2. My wheelchair and mechanic, David
Not too long ago, I had legitimate concerns as to whether or not I’d get a new chair. My old one was breaking down after six years of use, and insurance was not cooperating. A friend made a generous offer to pay for it, but Medicaid eventually picked it up. Either way, I was covered.
Any chair with as many functions as mine needs to be serviced occasionally. Sometimes a serious breakdown occurs, and I’m in immediate need of a mechanic. I’ve been fortunate in this regard, as I’ve worked with a wonderful mechanic named David for many years now. If a problem arises, he can usually fix it the same day. I know people who literally endure chair issues for months due to poor service.
3. Good health — knock wood
For the last two and a half years, I haven’t even had a cold, let alone a major illness. This is by far the longest streak of good health I’ve ever had. I used to get pneumonia biannually, and I dealt with metabolic acidosis later on. So, this has been a much-welcomed change.
4. Family and friends
Yes, it’s a cliché, and an obvious one, but I’d be remiss not to mention it here. My mom, dad, and grandma have always taken care of me, but my grandpa and friend Sam recently have helped out as well. I won’t go into details, because I’ve discussed it before, but I am thankful for their willingness and ability to assist with my care.
5. The existence of SMA treatment
If you’ve followed my column, you know that I’m holding off on Spinraza (nusinersen) with the hope of future treatment. Nonetheless, I’m thankful that Spinraza has helped many people within the SMA community. Although I haven’t personally benefited from it yet, I’m glad that we seem to have finally reached a breakthrough in combating this disease.
This is not an exhaustive list, but these are five things I’m most thankful for. When the weight of my disability overwhelms me, counting my many blessings is an antidote.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.