Considering the Future With a Spinal Cord Injury

Spinal cord injury.

I don’t believe my condition is as bad as that technical description sounds. Sure it’s tough, but in spite of a myriad of physical issues, I live a remarkably “normal” life. I’ve arranged my caregivers in a way that allows for an active social life, I’ve rediscovered the desire to finish my degree, and I seem to find myself in the occasional, sometimes questionable relationship.

Everything is going about as well as could be expected. So why am I writing this? Well, I worry about the future. Soon I’ll be 30, that arbitrary age responsible for more than a few existential crises. It seems the older I get, the more I worry that the cozy, familiar life I’ve built is a house of cards.

When I said I rely on others to care for me, I was referring to a longstanding group of nurses and family members that make my life possible. A handful of people contribute to my care, but my mother is my primary caregiver. She’s been there since an illness caused a non-traumatic spinal cord injury when I was 14 years old. She’s more than been there, she quite literally hasn’t missed a day. But she’s getting older too, she has her own health challenges, and caring for a quadriplegic can be a taxing gig. If something were to happen to her, I’m not sure what I’d do or where I’d end up.

It’s not that I haven’t thought about the future before; I would occasionally wonder what would happen if my mother wasn’t here but always pushed the thought out of my head. But my impending 30th birthday has seemingly accentuated the urgency of forming a plan before it’s too late.

I’m worried because I’m realistic. I know the potential endgame and I’ve spent enough time around the horrors of hospitals and nursing homes to know I’ll do anything to avoid living in one, even on a limited basis. To avoid that, some things need to be organized; some preparations need to be made. From housing to caregivers, finances, and health insurance, I’ll need to reinforce my house of cards with a little brick if I want to achieve my desired life. Here’s the kicker — I’ll need to figure all this stuff out just to maintain my current life. Who the hell wants to maintain? To just exist? I want to thrive.

A plan is never foolproof, but I don’t have time to wait; I’m forming one now. If you’re in a similar place with your disability, I believe you should too. Be aggressive in securing your future; act to make your life better. Patience be damned.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Shironosov.