I Am Adapting to My New Diagnosis

As it turns out, I wasn’t able to edit my novel in August as I planned. Hospital visits, fatigue, and vacation got the best of me. It looks like it’s going to take more than a month to edit an entire book, so I’m changing my schedule. Instead of querying in the fall, I’ll query in the spring.

I’ve been dealing with spinal muscular atrophy (SMA) for 22 years. I know the symptoms. I know when my body needs a break. But the fatigue is new. I have to give myself time to recuperate if I have any appointments. Caffeine only goes so far.

A new diagnosis equals new symptoms — symptoms that are a pain in the butt, and can go right in the garbage. But I’m learning to deal with it. I took September off, in case you were wondering. I quit my editing job. I put my health before anything else. 

I’m getting better, slowly but surely. There are still things I can’t do myself, like eating. But I’ve noticed I actually eat more when someone feeds me because my arm doesn’t get tired, so it’s not necessarily a bad thing. 

I can also use my computer again. It’s slow going, but it’s better than nothing. Now I’m back to editing my own book. I can’t write by hand anymore, and signatures are difficult because my hand shakes, but I’m excited about a signature stamp that my mom ordered.

I’m learning to use speech-to-text, which is faster and not as hard on my hands. Yes, I’m aware that I should’ve started using speech-to-text forever ago. I’m just very, very stubborn. 

“If you don’t use it, you lose it.” It’s a funny statement, one I’ve heard from multiple doctors in my life. But sometimes you lose it even when you use it often. That’s what SMA is: gradually, but progressively, losing mobility and function. If you don’t use it, you can lose it more rapidly, but it can be lost either way.

This isn’t intended to be mopey and sad. It’s meant to show you that, even at my body’s worst, I remain ready to change. I am always ready to endure. SMA has made me adaptable and stubborn. If I want something bad enough, I make it happen.

I find a way.

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.