It is July, the seventh month of 2019, and I am ready for this entire year to be done. I’m not joking. Something drastic and stressful has happened every month so far. Not with me — I’m fine — but I’ve had multiple family members become sick, and other stuff has happened. While I haven’t had to go anywhere or help handle anything, the stress of it is still exhausting because of spinal muscular atrophy (SMA).
My family has had to go away overnight to do things, and I’ve had to bring in extra care. This is usually easy enough, and it makes me thankful for having extra care to begin with. I’m lucky — many people don’t have care support. Still, I become nervous.
Is everyone OK?
Did my family make it down there safely?
How bad is the situation?
If I’m exhausted, I can only imagine what it’s like for the rest of my family.
My family is good about keeping me in the loop, and they update me every time something new happens. Still, I want to be able to help.
Is there anything I can do?
No one expects me to help because they understand my condition, but I feel like I should. Sometimes I just can’t, though, and it’s OK.
I try my hardest to avoid becoming run-down or overtired, but sometimes life happens, and I can’t help it.
I think about the good during these times because, for some reason, complaining about the bad only makes it worse. Yes, a lot of good has happened this year, too.
Here is the good:
I published a book, and when I think about that, I smile. I can officially call myself an author now.
We are having a large, screened-in, covered deck built so my allergic-to-the-sun self can actually go outside.
I started working with SMA News Today, which is crazy cool and has taught me a lot.
We set up a library room in our home. It’s my happy spot — only good vibes in there. Reading is my favorite form of escape.
There’s some other exciting news that I can’t quite talk about yet! It makes me both excited and a little nervous.
Thinking about these things doesn’t give me energy because, let’s be honest, only sleep can do that. But they bring me peace. They remind me to be calm.
The good is there. I just need to look a bit harder to find it.
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.