Dealing with grief over lost abilities is a perpetual part of SMA

Alyssa Silva avatar

by Alyssa Silva |

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In the SMA community, we expect to grieve the loss of our abilities, given the nature of this disease. But for me, grief often feels like an ambush.

In my three decades of life, I’ve lost many abilities. And every ability lost comes with its own grieving period. It’s a complex and personal experience that often takes me time to work through, no matter how many times it’s happened. I know now that grief is a process, and each process will be different.

Often, though, it starts with anger. I begin to resent SMA for robbing me of strength. It boils up inside of me until, suddenly, the sadness hits. And the sadness will bring the realization that my independence is chipping further away. My need for help from others will grow, and I’ll fight even more feelings of being burdensome.

In due time, however, I adapt. I find new ways to live my new life the best I can and find peace and acceptance in my disease progression. Life carries on. I forgive my body for getting weaker. But every once in a while, regardless of how many years have passed, grief creeps into my brain and strikes in the most unexpected ways.

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Sudden grief

A young woman in a long green dress of pale green or dark yellow sits in a wheelchair on concrete near a dock, with boats in the background. Beside her is a smiling golden retriever, sitting and on a leash with a pink collar.

Alyssa and her dog, Stella, at the beach. (Courtesy of Alyssa Silva)

Recently, I went to the beach with my parents and Stella, my golden retriever. On the ride home, Stella became agitated and started pacing around my wheelchair. This meant one of two things: She had to pee or she was about to get car sick.

To divert her attention, my mom started handing me crumbs of Lay’s potato chips to feed her. (Humans forgetting dog treats is likely every dog’s worst nightmare.) For a while, Stella licked my fingers but eventually got bored, leaving grit and grease on my fingertips. And with it came an unfamiliar pang of grief.

I lost the ability to feed myself when I was 15 years old. That winter, I was hospitalized with double pneumonia and fought for my life for two treacherous weeks. My only focus was on my lungs. But without realizing it, lying in a hospital bed and neglecting the rest of my body for so long was about to rob me of something I loved to do: eat independently.

Lay’s potato chips were always my go-to snack after school. The salt and vinegar ones were my favorite. After that hospitalization, I fought so hard to feed myself chips, as though it were a defiant act of denial. I wasn’t ready to accept my new reality. I thought I could coax myself into believing otherwise if I just kept trying. Maybe I could even gain the strength back.

But I knew what was imminent and eventually let the grieving process take place. Now, almost 20 years later, I felt as though I were reliving those feelings as I fed my dog chip crumbs. I’d forgotten what it was like to hold a chip in my hand. I’d forgotten how greasy my fingers would get and how I’d always lick the salt and vinegar off them when I was done. I’d forgotten how much I loved having the ability to feed myself. For the remainder of the car ride home, I let grief sit with me.

Grief takes many shapes and forms in my life. And it manifests when I’m least expecting it. In times like these, I’m reminded that it’s an integral part of my life with SMA. Though it may bring sorrow and pain, it also serves as a reminder that love once thrived in my heart. And grief is my way of hoping to hold on.

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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