Things I’m thankful for, although it might not seem like it, part 2

Last in a series. Read part one. 

Last week, I wrote about my wheelchair and how, even though I get frustrated or embarrassed by it sometimes, I’m thankful that it gives me comfort, support, mobility, independence, and opportunities to raise awareness.

Another thing I often complain about is medicine. Even on healthy days, I take multivitamins and nutritional supplements, a pill called Evrysdi (risdiplam), which treats my SMA, and other medications to occasionally help with pain, inflammation, and other symptoms. When I’m sick with a respiratory infection, the list gets even longer.

I realize that my pile of pills is minimal for an adult with a disability, and I have friends who manage more life-sustaining treatments daily. While I am thankful I don’t have a million pill bottles on my bathroom counter, I also struggle with the reality that I take more today than I did 10 years ago, and will probably need more 10 years from now, just like anyone who gets older.

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Turning grumbling to gratitude

Every time I go to an appointment, I brace myself for the possibility that the doctor will recommend adding something new to my regimen to address a new deficiency or complication. I also dread the potential side effects that can create new problems for me to navigate.

I know it sounds petty, but I don’t like to take medicine and would rather not be dependent on it at all. However, if I skip a dose of anything, I’ll experience the consequences. I wish I were stronger, healthier, more durable, and resilient, but I’m not. Medicine is a daily reminder to me that I am physically flawed and fragile.

But there is a flip side to that perspective that turns my grumbling into gratitude: Medicine doesn’t make me flawed and fragile; it actually gives my body a chance to be as strong and healthy as it can be.

It’s remarkable that scientists have discovered such small and simple ways to alleviate many kinds of physical discomfort and suffering. For example, if I didn’t have allergy medicine, I’d be absolutely miserable with constant itchiness in my eyes, nose, and throat, and I’d likely be sick far more than I am now. And if not for some powerful antibiotics and steroids, I’m sure I wouldn’t have survived multiple bouts of pneumonia like I have over the years.

For 30 years, I lived with an untreatable rare disease. So it’s truly a miracle that I have the opportunity to receive treatment that has slowed the progression of my SMA. Even more amazing is the fact that this treatment comes in a tiny pill that I can swallow once a day in the convenience of my own home. I’m filled with awe and gratitude for the opportunity to see and feel the benefits of it.

My hope in life is not in medicine, but in the faithful mercy of God. I don’t think the answer to a fulfilling life is found in mobility equipment, but in the loving kindness of friends and family. I do believe, however, that treatments and wheelchairs are special blessings that I’ve been given. Instead of complaining about them as inconveniences and a reminder of my needs, I choose to give thanks for the ways they help me enjoy my life and relationships more deeply.

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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.