Sometimes big plans are canceled when you put your health first

I’d been anxious about our trip to Austin, Texas, for months. I look forward to the annual Cure SMA conference every year around June, but my excitement this time was tempered by a kind of deep-seated dread. I knew it would be fine, but I was still nervous.

It turns out that it takes time to recover from a near-death experience. Weird, right?

In contrast, my parents were actually excited about the trip. It was slated to be our first successful trip in the RV — a milestone for our family, considering that our previous experience in the RV ended with me in the hospital. But the closer we got to the conference, the more things started to go wrong.

First it was the RV itself: common problems that wouldn’t have been an issue if we’d had more time. As it was, we had to scurry to find a repair company that could get us in before the conference. The couple of days leading up to the trip were, in a word, frantic.

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Enjoying the Cure SMA conference without attending

But it was the onslaught of health problems that had us second-guessing everything. My dad had been feeling unwell for a while — nothing serious, as far as we could tell, but it was still enough to give us pause. I was also struggling with health issues, including an unexpected bacterial infection that I was treating with an antibiotic.

Then the air conditioner in the RV went out. We were days away from the conference with no real hope of getting it fixed on time, so we decided to take the van and stay at hotels. We were all pretty relieved about that. We’d been excited to take the RV, of course, but after our hectic trip to Alabama last year, which featured a hospitalization due to a plugged feeding tube, there’s something to be said for what’s tried and true.

Making the hard call

We were scheduled to leave the next day when my dad started feeling worse. He wasn’t sure if he was up to driving all the way from Minnesota to Texas. But it was the inexplicable death of 28 of our fish that sealed the deal.

I’d had a bad feeling about the trip for months. Combine that with health problems, transportation issues, and plain bad luck, and it really felt like we weren’t supposed to go.

It was a difficult decision. I had several work obligations, including two conference panels over the course of the weekend. I didn’t want to cancel. But Alabama taught me a lot. I genuinely believe that things on that disastrous trip would’ve gone differently if I had listened to my gut and, more importantly, not pushed myself so hard.

I made the call to cancel the trip. I waffled back and forth over the next day or so, but deep down, I knew I had made the right decision.

Confronted with the reality of things

I don’t always feel disabled. The wheelchair is always there, as is the chronic pain and fatigue, but when I’m working on my book or playing games with friends, I don’t feel like I have SMA. I feel, for better or worse, like me — whatever that means. But having to cancel a business trip because of health problems, among other things, just serves as a reminder.

I live with complex health conditions. I have a rare disease that would’ve killed me decades ago if it wasn’t for modern medicine. SMA affects every area of my life, even though I wish it wouldn’t.

I have to put my health first. It’s my number one priority. And that’s OK! I would even go so far as to say it’s a privilege. In a world that places wealth over wellness, I am blessed to be surrounded by people who understand my situation and encourage me to put my health first. In the meantime, I’ll look forward to seeing everyone next year in Anaheim!

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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.