When I forget my limits, I must remember the need for a little grace

There are moments when I forget that I have spinal muscular atrophy (SMA).

Does that surprise you? It surprises me. It’s not as if this is a new diagnosis that I’m still adjusting to. I’ve lived with this disability for as long as I can remember, and even further back than that. For 40 years, I have depended on mobility aids such as walkers and wheelchairs, accessibility equipment such as ramps and lifts, and caring people to assist me with my basic needs. And yet, sometimes I forget that I cannot do most things the way many people do.

My amnesia moments

It happens in the most ordinary moments that look simple from the outside, but are much more complicated for me. Reaching for things is probably my most common issue — my range of motion is limited, my balance is precarious, and my grasp is not very strong.

So even if a tissue box appears to be within easy reach, it might not be for me. If someone stretches out their hand to shake mine, I’m embarrassed that my own hand remains unresponsive in my lap instead of effortlessly moving to meet theirs. I overestimate my own strength, assuming I can pick up a slightly hefty book, only to pull it off a table and drop it on my foot.

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I also overestimate my coordination, thinking that carrying a smoothie or a takeout box on my lap from a shop to my van will not end in disaster. But it usually does. I forget that I’m not actually walking on a sidewalk until it ends in a six-inch-high curb. I think I love twirling spaghetti noodles around a fork until it doesn’t work. And it never occurs to me that I’m not actually snuggled up on my couch watching a show until there is someone else sitting on my couch who I want to be snuggled up beside.

These amnesia-type moments are the worst. I get impatient with my body for not listening to me, much like an overworked, underpaid, exasperated second-grade teacher might with a delinquent classroom of kids. It makes me confused, then frustrated and angry, when a stern, verbal rebuke and a second determined attempt yield no better response. Depending on the day, I might growl, scream, or jab the wall with my wheelchair. Then I often say or think mean things about myself — that I’m pitiful and stupid for being so weak, useless, and helpless.

In blinding aggravation, I yell, “Why can’t you just work!” Tears usually come next, along with a painful feeling of betrayal; these hands, arms, legs, neck, and even lungs aren’t doing what they are supposed to do. They haven’t for a long time, and they probably never will.

But my body is not betraying me in these moments. It faithfully carries the practical knowledge of its limits, and it is telling me the truth before my mind is ready to hear it. The truth about SMA is that muscles are weak, strength atrophies, and neurological messages get lost in transit. It’s the body I have, and even though it is broken, it is still valuable and precious.

It is all right for me to acknowledge these moments of disappointment and frustration. But it is not all right for me to be so unmerciful to myself. I can take a breath, calm down, and then reset my expectations with kindness. That might mean I ask someone to help me, or I might need to search for a creative solution.

After all, maybe the goal is not to stop forgetting. Maybe it’s to meet the remembering with a little more grace.

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.