Facing New Challenges Gives Me Clarity and Control Over My Life

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by Alyssa Silva |

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For nearly two years, my days have been filled with health problems. Well, I’ve always had health battles to deal with, but in recent years, they seem to have amplified, or in some instances, multiplied.

Nevertheless, I’m grateful to have exceptional care. I have a team of brilliant doctors determined and willing to listen. They never gaslight me, and they believe me when I explain my symptoms at length, regardless of how strange they may seem. My family is always there to hold and encourage me when I lose steam. And I have friends who support me unconditionally.

But frankly, I’m exhausted from managing my care the last few months. It takes up much of my day and expends my energy.

In true “spotted zebra” fashion (a nickname my doctor affectionately coined for me), many of my symptoms aren’t easy to treat. They require appointments, tests, long email threads, phone calls, collective decisions as a team, thinking outside the box, and so on. To further complicate matters, after going through the long process of developing a game plan for treatment, more often than not, the original plan is unsuccessful and we end up back at the drawing board.

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As a result, this sometimes makes me feel like a failure, which is an unnerving feeling, especially when it involves my health. There are days when no matter how deeply I’m challenged and how greatly I try, I fall short. The irony, however, is that I know I’m not a failure, so why do I feel that way?

Pushing myself

At the start of the year, I decided I needed a new challenge that had nothing to do with my health, but which would still push me. I wanted to prove that I can do hard things. After some thought, I decided not to spend a single cent on myself for the entire month of January.

Full disclosure: I don’t have a shopping problem. But I do enjoy getting coffee at Starbucks, buying random things on Amazon, or succumbing to an Instagram ad that knows how to lure me in. Guilty as charged.

In the doldrums of winter — or a pandemic — shopping is something I get excited about. I love knowing a package is headed my way in the mail. While I know how to live within my financial means, I do accumulate a lot of stuff I really don’t need. So, given my track record, I knew this would definitely be challenging for me.

What happened

It turns out I was right. As of this writing, only a few days remain in January, and I’m happy to report that I’ve come this far without splurging on myself. I have a good feeling that I’ll successfully make it to February without spending money. But the challenge has been more difficult than I expected, which is making me entirely reconsider my spending habits.

When I take a closer look, I notice that the challenge also has taught me that despite what my health tries to coax me into believing, I still have control over my life.

Lack of control has always been my biggest struggle while living with this disease. Between my health and having to depend on others, it’s hard to gauge which areas of my life I can still manage on my own.

Although it may seem insignificant, this challenge has helped me to reclaim a sense of autonomy. It has pushed me out of my comfort zone and made me realize I can do hard things. Most importantly, it has reaffirmed what I already knew deep in my core — that no matter how many times I face adversity or challenging circumstances, I’m not a failure, and I have the ability to confront them.

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.


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