Columnist Joanna Buoniconti: Why I’m getting weaker again

  • Joanna Buoniconti

Published: 1/31/2022 1:39:21 PM
Modified: 1/31/2022 1:37:51 PM

More than a year ago when I accepted the position to be a columnist and pour my heart out on a monthly basis, I made the decision that I would not only discuss disability issues that I felt were being overlooked but also that I would let my readers into things that are going on in my life.

Because as I’ve mentioned previously in my columns, I consider everyone who reads my writing on a regular basis to be my friend, and I would be a terrible friend if I wasn’t transparent with you regarding things that are currently affecting me deeply.

One issue that has been weighing heavily on me for the past month and a half is that my body has been getting noticeably weaker — once again.

My weakness first became apparent the Tuesday before Thanksgiving. Similar to every other moment in my life when I first began getting weaker, my first instinct was to brush it off. I attributed the increased need to have my right hand repositioned on the controller that I use to maneuver my chair around to the slightly thicker sweatshirt I was wearing that day or my not sleeping as well as I thought the night before. Because a fun fact about me is that I have always avoided thicker sweaters and sweatshirts like the plague for that specific reason: just that slight change in weight on my spindly arms has the frustrating ability to significantly decrease my movement and strength.

This may all sound incredibly trivial but ever since I was 15, which is when my strength began declining rapidly, I have had to make the conscious choice many times to be cold rather than wear something that would further hinder what little movement I do have.

It was a decision that I had hoped for a period of time that I would never have to make again, but unfortunately, fate had other ideas.

When I began the first-ever FDA-approved treatment for my condition a little over three years ago, it’s sad for me to admit, but I had little hope that it was going to help me. The sobering truth about my disease is that it affects every individual who has it differently, and the reality of the treatment was the same. My doctors couldn’t predict how my body would respond to it. In the three months between their finding an access point to deliver the medication into my spine to when I received the first injection, they warned me that people in my age bracket ranged from regaining significant muscle strength to just maintaining the current amount of strength they had.

In those months, I mentally prepared myself for the worst outcome while remaining cautiously hopeful for the best. Because even the worst possible outcome — just maintaining my current level of function — was 10 times better than the course my body was heading down.

The treatment had been approved by the FDA in late 2016 and my doctors had declared that I wasn’t a candidate for it, due to the fact that I had had my spine fused several years previously. They were positive that they wouldn’t be able to get the medication into me, aside from an invasive procedure where they would insert a port into my back and thread a catheter into my spinal column to deliver the medication intrathecally.

Considering that I was substantially weaker than the last time I had been placed under anesthesia, I was fairly positive that I would not escape the surgery unscathed. So I declined my only option to receive the treatment at the time, and knowing that there was nothing else to help me broke me.

When I was younger, my doctors would reiterate at my yearly appointments that my disease weakness usually happened in five-year increments. That was not the case for me though. Throughout my childhood, my strength was steady. It wasn’t until I was a teenager that I experienced my first debilitating bouts of weakness. And what rendered it even more emotionally scarring was how quickly they occurred: one day I would be able to reposition my hand independently on my wheelchair’s controller and the next day I no longer could. The losses in ability happened more gradually at first, but by the time I hit my 18th birthday, they were constant. It got to the point where I could barely cope with the loss of being able to do something and learning to adapt around it before something else would occur — which inevitably wreaked havoc on my mental health.

But fortunately, my brilliant doctors devised a way to administer the medication into my system and the treatment exceeded my every expectation. It didn’t just stop the progression of my condition in its tracks, but also allowed me to get significantly stronger. At the end of last summer, I got a new wheelchair and that, combined with my strength, made it so that I didn’t need my hand repositioned on the controller nearly so often. And I basked in my newfound independence. I squealed with glee as I raced around my neighborhood while my mom literally ran after me because I had lost the ability to go fast in my chair approximately 10 years previously and experiencing it again was akin to reclaiming an ability that I thought I had lost forever. However, just as quickly as this improvement, it was taken away once again.

Since I began the treatment though, I had heard from others in my disability’s community that this is something that loss of strength just happens after a certain number of injections. I was hopeful though that I would never experience it since I had responded to the treatment so well. But once again, I was not so fortunate.

For most of my life, I have felt like I was constantly at war with my body that was so destined to fail. And lately as I laid awake in the small hours of the morning, waiting for sleep to come, I can’t help but let my fear get the better of me if this proves to be the next stage of my disease’s progression.

And if it is, I know I’ll get through it in time. Because I’ve been through worse.

Gazette columnist Joanna Buoniconti is a freelance writer and an editorial intern at INCLUDAS Publishing. She can be reached at columnist@gazettenet.com.


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