When SMA symptoms make me feel ‘Muppety,’ I rely on my friends
The strength of my community helps me through my weakest days
“I’m feeling a bit Muppety today.” It’s an adjective I made up for myself years ago (meaning “like a Muppet”) because there are just some aspects of having a neuromuscular disability that are hard to describe and explain. But as they say, if you know, you know.
Consider the low muscle tone of Kermit the Frog, with his floppy, skinny limbs that dangle and are aimlessly flung around; the rigid neck of Miss Piggy, who can’t turn her head from side to side or even move it up and down (because, frankly, she has no neck); and Gonzo, with his high muscle tone and spastic movements that seem dramatic and daring, but are really just a symptom of his lack of control. You get the idea, and can probably identify a Muppet that you relate to given your own unique limits, strengths, and wackiness.
I have lived a pretty long time with SMA, so overall my body is weak and Muppet-like. Because this is a normal part of my everyday life, I have been able to adapt so I can still be independent in many ways. But some days, I feel especially weak, when every part of me pathetically fights against the overwhelming pull of gravity. I drop things constantly, lose my balance, get stuck in awkward positions, am too slow to answer my phone that sits right beside me, and can’t even move my hand from my lap to the joystick control on my wheelchair.
It’s usually because I haven’t gotten enough sleep, water, or vegetables, but sometimes I can’t point to the reason. Those are the days when I feel the most “Muppety” and am tempted to have a pity party or get angry and frustrated with this disease and its relentless attack on my health and happiness. It feels like too much work to ask my friends and family to do even more for me than they normally do, and it can seem humiliating to be so needy.
There are many funny things about the Muppets, but one fact I find fascinating is that they are completely dependent on someone else. Did you ever think about the fact that without a puppeteer, a muppet is nonambulatory and nonverbal? It cannot sing or dance or tell jokes or play in a band or flail its arms around in excitement, unless someone is providing assistance. Muppets are made with care, and they definitely have a personality and tremendous potential even as they sit propped on a shelf, but they need a bit of help from a friend to really shine.
I don’t know why, but that information is weirdly relatable and comforting to me. It’s not that I’m a lump of wool that needs others to do all the work, but when my caregivers come alongside me and do things with me, so much more is possible.
On my weakest days, I’m really thankful to have a loving community who will move my arms and adjust my head, who pick up everything I drop and clean up my messes, and who lift me up and make me laugh and sing. They remind me that my life has purpose and joy beyond the limits of my body and that I am not helpless, because I am not 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.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.