Grieve Leave Community Blog: Accepting My Disability Doesn’t Mean I Don’t Grieve

Written by Jacqueline Child
Dateability Co-founder & Co-CEO

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I’m disabled. But I haven’t always been. 

When I was 14, my body started to do things that most people don’t experience until their elder years. I lost control of my body, pain riddled my joints, muscles, and skin. My exhaustion had no end. I wondered how a seemingly healthy, active teenager came into this sick body; my family, my peers, and my doctors wondered that too. 

One day I was fine.The next day I was disabled. 

At first, it was survival mode. Who was going to cure me? When was this sickness going to be reversed? Between the severity of my symptoms and constant medical appointments, there wasn’t much time to focus on anything else. But after years of being let down treatment after treatment, my experience shifted. 

I accepted that this sickness is permanent, and I am disabled.There is no cure, no quick fix. I began to see my body for what it was, for what it was going to be, and for what it would never be again.  

My grief with becoming disabled was two-fold: I was mourning my past self and I was mourning what could have been Grieving my past was more explicable— of course I missed my ability to play on a soccer team and attend school like a typical teen. But thinking about how all my future plans and desires were up in the air confused me. 

How do you grieve something– a future– you never got to have?

Dynamic disability means unpredictability. So, I made the decision to not have 5 year plans. I was going to take it day-by-day.. I also realized that having low expectations was how I would cope. I’d go into every surgery or medication trial reassuring myself that I would be ok even if it’s unsuccessful. When you have low expectations, how can you be disappointed? If you don’t make plans, how can you be upset when they don’t work out?

People talk a lot about hope. Some of you might think I don’t have any. And maybe you’re right…But I don’t feel like I need it. Because now, 15 years post-acquiring a disability, I know I will be ok whatever happens. 

When you’re the one who becomes disabled, you end up taking on a lot of people’s grief and I get it— it’s hard seeing a loved one become disabled. People will want to “fix” you. They will suggest going to all ends of the earth hoping that you get miraculously cured. These implications that your body needs to be fixed  feel heavy and unsupportive. You inevitably end up comforting someone who is upset at your body’s change and you feel guilty for causing such sadness and distress. But as always, time moves forward and as you begin to accept your disability, those around you do too. 

Someone once told me: “You’re either lucky enough to live so many years to acquire a chronic illness, or you die young.” Disability is something anyone can acquire at any point in their life. Disability is not something you need to be afraid of. It’s also not something you need to love. But it is something you need to accept. 

Occasionally, I’ll still grieve what could have been. I don’t bury those uncomfortable feelings; instead, I try to figure out what emotions and feelings are associated with the “what if” dreams and find a way I can still get to them now. What made those visions so desirable? Connection, happiness, belonging are all virtues that weave together my “non-disabled” dreams. And so I find a way to get there— to feel those all those things even as a disabled person. Maybe it’s a different path than I intended to take, but so what? Getting there is what counts.