Because of SMA, I Was Able to Support a Friend in Need
Content warning: The following contains mentions of medical trauma and death.
I knew something was wrong. But I didn’t always.
When my friend and fellow columnist Sherry Toh messaged me one evening to say she was sick, I assumed it was a cold. She would disappear for a few days to recover, only to reappear rejuvenated and ready to resume her fight for Evrysdi (risdiplam).
I’ve written previously about my friendship with Sherry. Even though I’m based in the U.S. and she lives in Singapore, we’ve been talking regularly for years, and even have a Discord server with channels for everything under the sun, from “Star Wars” to collaborative writing projects.
Knowing Sherry has been one of the great joys of my life, and not just because she’s an incredible person. Befriending her changed not only my understanding of rare disease, but also my relationship with my own illness. We are “life partners” in every sense of the term — we support, challenge, and encourage each other, often at the same time.
When Sherry fell sick, I understood the implications. With SMA, something as simple as the common cold can wreak havoc on our immunocompromised bodies. While I hoped for a quick recovery, I knew that it could become serious with frightening speed.
I didn’t hear from Sherry for a while. Part of me understood — I’m intimately familiar with the “common cold turned weeklong disaster.” But part of me was starting to panic. Awhile back, Sherry promised her brother would reach out if something happened. But what if he didn’t have my contact information? What if he forgot? What if Sherry was already dead, and I would never know?
I reached out to Sherry’s partner, hoping she’d heard from her. But Sherry had gone radio silent. All we could do was wait.
I told myself she was resting. Laid up in bed, without the strength to use her phone. The worst-case scenario was that Sherry was in the hospital — which really wasn’t worst-case at all. Hospitalizations are often the best course of action for folks with SMA. I’m not exaggerating when I say that I’m alive today because my pediatrician wasted no time admitting me.
One morning, I woke to a message from Sherry. My heart leaped at the notification. It was the first time I’d heard from her in days.
“In hospital,” she wrote. “I will explain after discharge.”
I updated Sherry’s partner and told our colleagues at BioNews, the parent company of SMA News Today, that she would likely be skipping her next column. It’s difficult to explain how relieved I was. There’s something to be said for knowing a loved one is in the care of experts.
It turns out I was wrong.
If you’ve read Sherry’s latest column, you’ll know that her hospitalization was, for lack of a better term, hellish. She endured everything from negligence to ethical oversights that could’ve ended her life. When Sherry told me what happened, I was quite literally sick to my stomach.
I’d almost lost my best friend.
She’s alive, and I’m so incredibly grateful. But the entire experience has me reflecting on something I’ve written about before: disability care. I’m never not in awe of how our communities show up for one another, from organizing fundraisers to ensuring folks get the support they need. This is evident in the population at large, but it’s also evident in our personal relationships.
I was able to comfort Sherry’s partner because I know what hospitalizations are like. Able-bodied folks often jump to the wrong conclusions, assuming that being hospitalized is worse than it actually is. In a moment of uncertainty, I was able to clarify that, while a hospitalization sounded scary, it was truly the best thing for her.
I was also able to update our colleagues. Several people reached out to me throughout Sherry’s hospitalization with their well wishes, knowing that I would likely be in contact with her. In many ways, I served as Sherry’s chosen family, fielding communication and doing my best to keep everyone in the loop.
I don’t say this to toot my own horn, but to point out the care web that blossomed as a result of our friendship. Our shared diagnosis makes it possible for us to support each other in unexpected ways. We’ve been in each other’s shoes. We know from experience what the other person needs and how to best secure that in moments of hardships.
Sherry is half a world away. But I’m there for her, as she is for me — and it’s all because of SMA.
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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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