The sweet stuff my caregivers do that enriches my life with SMA
How they go above and beyond to perform acts of kindness
One thing I love about this time of year is a little extra indulgence: twinkle lights, sugary sprinkles, and of course, a generous dollop of whipped cream on top of, well, everything! These details may not be essential to our health and well-being, but they are beautiful and delicious and delightful. This makes me think about the special caregiving “indulgences” I have received from my friends — the sweet stuff they do for me that isn’t necessary but is so special.
“Would you mind …?” “Could you please …?” “Is it OK if …?” My days are full of asking these kinds of questions and making requests of others. It’s just part of the reality of living with SMA. I know it’s important for me to verbally express my needs; it’s also essential that I play an active role in finding and explaining solutions to problems.
With lots and lots of practice over the years, I’ve learned how to be polite and try not to be too high-maintenance, demanding, or assuming. But sometimes it’s exhausting, even wearying, to constantly initiate these requests and instructions.
Because of this, I often shorten and simplify my list of requests to the basics: I need to be clean, clothed, safe/stable, fed, and hydrated. I need access to objects and exits before I’m left alone. And I need someone to drive me to appointments, stores, and scheduled social commitments. With these needs met, I do not feel vulnerable or neglected; I can function independently and maintain a healthy lifestyle pretty well.
But my friends are my caregivers, and they want me to do more than simply “function” and “maintain.” They really care about me, and they find ways to go above and beyond what I ask, to perform big and little acts of kindness that enrich my life. Here are a couple examples:
They make me feel pretty. Some friends like to play with my hair — curl it, braid it, or put it up — and they have a knack for making it look amazing. Other friends paint my nails or encourage me to add a little “bling” to my outfits, and a few are really good at going through my closet and putting together combinations I wouldn’t have thought of myself. When they pay close attention to the details of my appearance that I cannot see or fix, and even take the time to smooth out wrinkles or remove lint balls or tuck in tags, I feel more confident and excited to interact with others.
They help me relax and refresh. I actually have a friend who comes over on a weekly basis to massage my neck, shoulders, and feet! This feels really decadent, and not something I would dare to initiate on my own, but it has been so good for my muscles and blood circulation, not to mention my mental health. My shower team has done a great job of slowing down and letting the pressure and heat of the water relax my muscles and promote better breathing, too. And some friends offer to get things prepared and set out for me in the evenings, like a hot cup of tea, a cookie or chocolate, a pillow and blanket, or a book. When I’m stressed or tired, it’s nice to have them ask me, rather than wait for me to ask them (which I probably wouldn’t).
I think it all comes down to kindness, which is that magical sparkle that makes life more beautiful and joyful. And it isn’t difficult; it just takes time to observe, pay attention to details, get to know someone, and think of ways to make them smile. I encourage you to be a friend who cares enough to add those thoughtful, sweet gifts — those twinkle lights, sugary sprinkles, and whipped cream — to someone’s life this week.
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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