As I have advanced through the years of living with a spinal cord injury, my concerns about living with the injury have changed many times. Early on, my only concern was surviving. Every day of the first few years was a blur. Looking back, it seems a bit dramatic, but I honestly never thought I would have made it through 18 ½ years in a wheelchair. As things settled down, the concerns about my injury remained, but my focus shifted to the mundane aspects of growing up and being an adult. In recent years, as part of what I like to call a mid-injury crisis, my concerns have shifted toward the future and what getting old with a spinal cord injury will be like.
As I grow older, my biggest concern is my health. At 34 years old, I like to think I’m still young but on many days my body feels like it’s been around since the Civil War. The things I recovered quickly from 10 years ago are no longer easy to recover from, and this isn’t limited to spinal cord injury stuff. If I stay up too late, I feel like I’m dying for the next several days. The secondary complications of the injury don’t get any better either. My skin isn’t as resilient, the nerve pain keeps getting worse, and the arthritis in my spine is worse than most people will ever experience. The issues I have now are bad enough without whatever the future may bring.
Finding and keeping good caregivers has been a constant struggle that seems unlikely to ever improve. I’m fortunate to have a very supportive family that helps me out whenever I need it, but I won’t be able to rely on them forever. In the past year alone, I’ve had a caregiver sent to my house that fell asleep sitting next to me at my kitchen table, another with only one functioning hand, and one who left me in the bathroom halfway through a shift. I could list countless other examples, but for the sake of brevity I’ll leave it to those three. The thought of relying on people every day for the rest of my life is both depressing and terrifying.
It’s weird to say it, but if I had to break my neck, I’m lucky that it happened in a car accident in Michigan. Michigan has a unique insurance system that pays for the medical expenses of those catastrophically injured in car accidents. My benefits are supposed to be unlimited for the rest of my life. Unfortunately, last year the Michigan legislature passed a law changing the auto insurance system, allowing drivers to opt out of unlimited coverage and choose lower levels of coverage. The new law also caps reimbursement for providers and changes rules for caregivers. The changes in the law will undoubtedly lead to a reduction in benefits for myself and others who are currently injured, and those who will become injured in the future. Much like Medicaid or any private insurance, it’s hard to imagine a scenario where it gets easier for any of us to receive the benefits that we need.
I know this post has been a bit of a downer, but all of these things are a very real part of what I and many others have to face every day and will continue to face in the future. All is not hopeless, however. It’s exhausting, but we need to continue to advocate for our community, contribute to ongoing research, and share our experiences to raise awareness. As we start a new decade, we need to continue to fight for a better future for everybody.
Written by Mike Franz
Mike is a C6 quad from Michigan who has been injured 16+ years.