Guest Voice: On loss, survivor’s guilt, and disability pride

Robin Collins is a self-described “little old lady.” She’s 4 feet tall in her wheelchair and unexpectedly hurtling toward age 70 while wearing functional, ladylike skirts. Robin has SMA type 3, which was diagnosed before she turned 10. Lately, she’s more vocal, writing down her thoughts and sharing them with just about anyone. Where her life and its lessons will take her is unclear, but she continues to find purpose in them.

One of the things I continue to struggle with as a disabled person is the loss of my abilities. That’s brought changes, sometimes big ones, to my life. A progressive illness means the mourning process returns again and again.

It’s not easy being disabled, but I’ve noticed that with SMA and similar conditions, people like me seem to experience the cycle of grief every time we lose another ability. I grieved when I could no longer climb stairs independently, when I could no longer stand independently, when I could no longer dress independently, when I could no longer sit in the tub or shower to bathe independently. (I’ll stop there because my list of losses goes on and on.)

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Now I’m totally dependent on someone to help me throughout the day. I get most meals cooked for me because I can’t chop or prepare food, open jars or cans, or safely use the stovetop, and I absolutely can’t open the oven door. The microwave is the only kitchen appliance that I use. My husband is therefore the main cook, dishwasher, and kitchen cleaner. (Those roles are in addition to the multitude of other personal tasks I rely on him for.)

To be blunt, it’s a complicated personal relationship when your loving, supportive spouse of 40-plus years eventually becomes your 24/7 caregiver, too.

So I don’t just mourn my physical losses; I also mourn for our past. I mourn for the life we had as a young couple in our 20s, when I was mostly independent. I mourn for the time when I was still in the process of growing older and all I needed help with was getting in and out of bed. And I mourn for the days when my husband knew he could leave me alone for most of the day.

Even though I mourn my losses, I can also feel extremely guilty because I’ve survived. Survivor’s guilt is real. I say to myself, “Why am I even complaining? Golly, I’ve lived longer, sometimes decades longer, than my SMA peers!” But if I’m feeling majorly frustrated, I’ll even ask myself what makes my life worthwhile.

A yearly reprieve

When I needed a reminder this year, along came July! Disability Pride Month articles and posts abound on supportive topics such as how having a disability does not diminish your worth. So today I will refocus on my worth and my contributions to my community. Heck, yeah! I do have something to give to others.

Reinvigorated, I will focus on the present, let go of the past, and try not to worry about the future, at least for today. (Thank you to my mental health counselor for her gentle reminder, too.)

One final reflection: My friends and family have come to realize that I take after my parents because I can be a very stubborn woman when I have a purpose, like making my husband’s life miserable (inside joke) or writing this Guest Voice today.

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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.