SMA reminds me of the importance of having a support system

Sherry Toh avatar

by Sherry Toh |

Share this article:

Share article via email

When you’re living with SMA, you quickly learn that you cannot function without someone else’s help.

One of my earliest memories is of a nurse telling me that she’d asked doctors to remove my nasogastric tube for me. I must’ve been 3 at the time. My parents weren’t around to advocate for me in that moment, but she was. That small act endeared me to her for the rest of my life, even though I haven’t seen her since my age was a single digit and I no longer remember her name. Every time I’m hospitalized, I think of her and wonder where she is now.

It’s such a simple memory. But let’s examine it further.

Let’s start with the nasogastric tube. A child who’s hospitalized with one needs doctors and nurses to help care for it. They also need formula, which must be ordered by hospital administrators, and then delivered and stocked by other workers.

Additionally, the child needs nurses to bathe them, play with them, talk to them, and advocate for them while their parents are away, just as much as they need doctors to examine, diagnose, and treat them.

And let’s not forget the cleaning staff who keep the wards clean and stock the tissues and soaps, or the cooks in the kitchen who prepare meals for the child once the nasogastric tube is removed and the doctor says it’s OK to try tolerating porridge.

There’s an entire ecosystem, a village, that the child with SMA must become aware of as soon as they’re old enough to comprehend their surroundings. There are unsung heroes and parts of that ecosystem I’m sure I’m forgetting to mention. But the existence of that network means that the child — me, in this particular case — learns early on that “help” isn’t a bad word to use outside of the home.

Recommended Reading

A graphic showing a scissor cutting or splicing a double-helix strand of DNA.

SMA research offers clues into how splice-modifying therapies work

It takes a village to keep an adult sane

I’ve been thinking a lot about the memory I mentioned since I was hospitalized in February for a respiratory infection.

The first three months of 2024 were a rough ride for me. I was dealing with a breakup, discovering I might have attention-deficit/hyperactivity disorder (ADHD), and worrying about being laid off from my part-time job. On top of that, my body was incredibly weak when I got home from the hospital, and I struggled to tolerate water and food for weeks.

With everything going on, I hit a low point and started lashing out at myself and the people around me. In turn, that made me feel like a dangerous animal who had to be put away, which made me want to lash out even more and drink tons of alcohol so I could blame my pain on something that wasn’t me.

It didn’t help that, because I could barely tolerate water without nausea, I was afraid of how my body would react to my antidepressants. So I didn’t take them. Unfortunately, doing so meant that what I suspect are ADHD symptoms, including my sensitivity to perceived rejection or criticism, were much worse than usual.

I didn’t want to talk to anyone. I didn’t think their lives were better with me in them. I didn’t believe I was a good person. I didn’t think I should’ve had to need anyone. I just wanted to be left alone.

I didn’t even want to go to Taylor Swift’s “Eras” tour in March. If you know me, you’ll know how big of a warning sign that was because I adore Taylor Swift!

Thankfully, I’m doing better now. I started taking my antidepressants again, which have long since kicked in. I’m drinking and eating better. And I’m feeling more like myself in general. I’m also back in therapy to prevent future meltdowns.

But I think this is one of those rare cases where SMA saved my life as much as it caused me problems. Though it did lead to a hospitalization and me being off my antidepressants for longer than what was ideal, it also ensured I was always surrounded by people and sticking to a routine. It meant my brother and dad had to take me to the stadium to see Swift, preventing me from bailing on concert plans made months in advance.

Sometimes I like to believe I’m built for isolation. I’ve isolated from the world so much due to chronic pain and flu seasons that I was already a pro at it by the time COVID-19 lockdowns were implemented. But the truth is, I just forget how much help I need from other people and that no one is built to live life alone.

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.

The post SMA reminds me of the importance of having a support system appeared first on SMA News Today.