Floppy neck, fragile grip, friendly smile: My 3 Fs of living with SMA
These things are important for any of my friends or caregivers to know
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Like every human being, I am complex. Living with a rare genetic disability like spinal muscular atrophy (SMA) adds another layer to that complexity. Labels like “female,” “disabled,” and “nerd” cannot capture the whole of who I am — my stories and relationships, my joys and sorrows, hopes and fears, beliefs and questions.
But this week, I’ve decided to share three things about me that I think are important for someone to know if they want to spend time with me as my friend and/or caregiver. And to make it fun and easy to remember, they all start with the letter F!
Floppy neck
My head bobs around if I’m in motion, whether I’m driving my wheelchair, being transferred out of it, or riding in a car. It doesn’t hurt me, and I hardly ever think about it, but I’ve noticed that it tends to cause some alarm or anxiety for people who are with me.
My neck and shoulder muscles are very weak, so stability and balance are a chronic challenge. My customized seating system in my wheelchair, along with my headrest, provides a lot of support for me to stay upright and self-adjust as needed throughout the day. It is good for my friends to be aware that sudden moves or unexpected jostles might mean I need a little extra help to find my center again.
Fragile grip
Speaking of muscle weakness, I have very limited use of my hands and arms. My wheelchair is a great substitute for legs that do not cooperate, but there is no comparable substitute for hands. I rely on other people to carry books, lift coffee mugs, reach across a table, and help with countless small tasks. If you hand me something, please do not let go until I tell you I have a secure grip; otherwise, I will very likely drop it. And if you give me a present wrapped in paper or tucked into a bag, you get the special honor of opening it for me!
Friendly smile
Yes, my smile is genuine. It’s probably the thing I’m complimented on the most often. Actually, I’m rather self-conscious about my smile, because my teeth are a bit crooked and I have an overbite. But I have learned that my smile is about more than my mouth.
True, I have chubby cheeks and laugh lines, but I think I mostly smile with my eyes. Something I’ve realized when I’m with other people who have SMA is that our faces are dramatically expressive, and I think it is partially because we are overcompensating for our lack of body language. I can’t dance around, jump up and down, or even clap my hands. So all the delight, excitement, and friendliness that I feel in my whole body get expressed through my smile!
These three characteristics are definitely not the only things I want people to know about me, but they are a good starting place for making time together easier and more comfortable.
Genuine friendship and excellent caregiving begin with paying attention, asking questions, and seeing the whole person beyond any label. When we take time to learn one another’s needs and ways of expressing ourselves, we create opportunities for trust, connection, and a lot more joy.
Whether you have a disability or not, what are three things you want others to know about you? Please share in the comments below!
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.
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