With SMA, getting ready for the day involves more than just physical tasks
My caregiver helps me look good on the outside, but my attitude is up to me
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“Are you ready?”
My caregiving friend stands beside my bed, poised to uncover me in the morning. I utter a very unladylike groan and clutch the edge of the warm blanket that is tucked under my chin. No, I’m not ready! The days are growing shorter and colder; the sun isn’t even up yet, so why should I be? I squeeze my eyes tightly shut, willing the bedside lamp light, my dear friend, and all my responsibilities to disappear and let me stay here all day. Some mornings, waking up with spinal muscular atrophy (SMA) makes the mere thought of sitting up, fighting gravity, managing my care, thinking creatively, and staying positive absolutely exhausting, and I do not want to do it.
Amazingly, my friend patiently waits; her question is not rhetorical, so she will not act until I answer. Even though our time is limited and she has places to go and things to do, just as much as I do, she gives me the dignity of choosing to say yes to this day and all that it will require of me. I wrote a poem about this almost 15 years ago, which goes to show you how long I’ve wrestled with this choice and how long my friends have extended grace to me.
The truth is, there is very little I could do to stop my caregiver from getting me up and dressed. She could pull the blanket out of my feeble grip, roll me over, and complete most of her tasks while I continue to sleep. I could be upright and buckled into my wheelchair before I open my eyes or say a single word! Whether I want to or not, someone else could force me to face the day. I would probably be grouchy, whiny, and resentful, but at least I’d be dressed and groomed. But what is the point of looking good on the outside and feeling rotten on the inside? Why would anyone want to live that way?
My friend and I both know that the most essential part of my morning routine is my attitude adjustment. That is something I have to take responsibility for; she cannot do it for me. Only I can decide whether I will truly live this day with purpose and hope.
As my friend stretches my arms, I mentally prepare myself to be flexible when plans change or expectations go unmet. As she replaces my pajamas with the fresh, clean outfit we picked out the night before, I replace my dread of challenges with reminders of all the beautiful things that await me: visits and meaningful conversations with friends, exciting work that genuinely helps people, sunshine on my back porch, funny and thoughtful texts, and delicious meals to cook and enjoy.
Once I’m in my wheelchair, I roll down the hall to the bathroom. My friend hands me a warm washcloth to clean my face, and I pray that my smile will be genuine and encouraging to others throughout the day. Then she hands me my toothbrush, and as I scrub my teeth, I resolve that my words will be kind and wise. She brushes and styles my hair, and I prepare my thoughts to be orderly and optimistic.
I have to be intentional about shifting my focus and redirecting my thoughts because most days it does not come naturally! Some days I do it better than others, and sometimes the struggle is very real. Sometimes it isn’t until after breakfast, when I’m holding a hot mug of tea in both hands, that I let out a big sigh and pray, “God, I cannot do this without you today. Please help me — give me an infusion of your joy today.” And you know what? He actually does.
So let’s return to those first minutes of the morning, after I’ve snuggled with self-indulgent pity against the impending cold, cruel world waiting beyond my bed. I take a deep breath, blink my eyes open, and smile bravely at my friend. I relinquish my hold on the blanket and the comfort of hiding, and I say, “OK, I’m ready. Let’s do this.”
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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