First, thanks for the emails, Tweets, and Facebook posts. Last week’s major seizure was totally unexpected, and I appreciate everyone’s concern and encouragement.
What was most interesting to me, though, was the amount of support Lor received. Messages ranged from “You go, girl!” to “EWWWWW! Do you really have to…?”
The short answer is yes, she does. Lor does periodically get to essentially change the diapers on her middle-aged husband.
Let’s talk about the role of a caregiver for a moment, shall we?
The Anchor Below The Surface
I might not be writing this today without the help of my caretakers over the years.
Seriously. As a person who has dealt with not one but two disabilities (epilepsy and morbid obesity), I have a certain perspective on this. And I simply could not enjoy the life I do without people willing to make my life possible.
Without Lor’s assistance, my ongoing recovery from obesity would not have been half as successful. She has acted as a fitness coach, a cheerleader, and a drill sergeant. Meals have been prepped. Visits to the gym and to the doctor have been scheduled. Dire threats have been issued about the potential results of bad food choices. Lor has alternately led the way, stood beside me, and gotten behind me to power me over obstacles.
Anytime I have begun to drift away from new lifestyle practices, Lor has kept me in place – an invisible anchor below the surface of the stormy seas of my waxing and waning enthusiasm.
My success in beginning to overcome obesity is entirely due to her help. But even that pales when compared to what caretakers have done for my other disability.
The Never-Ending Struggle
It is one thing to work in concert with someone as you help them overcome an obstacle. You can encourage success and share the pain of failure as you work toward a common goal. At the end, you can look back and congratulate yourself on helping someone reach what they could not do on their own.
It is something else entirely to be acting as the caregiver for someone who is never going to “get there.”
Those caring for loved ones with degenerative conditions have the loneliest jobs of all. The only thing you can do is to try to improve the quality of life within the constraints imposed by illness.
These are the people who get to turn over bed-ridden parents regularly. Who have to schedule their lives around patients who can’t be left unattended. They might end up watching as a loved one withers away from cancer or Parkinson’s. Some are no longer recognized due to the effects of dementia or Alzheimer’s.
And, yes, these are the folks who get to clean up after seizures and other humiliating losses of bodily control.
Caring for someone with a degenerative condition is no joke. Though Lor shoulders the majority of the burden for my care, it requires assistance from a whole lot of other people. A team of caregivers, if you will.
And, in the end, what does all this effort result in, anyway?
Return on Investment
Well, Misdirected, for one thing.
If not for the assistance (and insistence) of my Mom back in 2008, I would never have received my Vagus Nerve Stimulator. The VNS has been the single most effective treatment for my seizures to date. Before the VNS I had clusters of seizures every single day.
If not for the support of my best friends I would not have gotten over my depression and suicidal urges.
Without the encouragement of my Father, I would have been afraid to try to “increase the size of the box” of my limitations.
Without Lor’s constant, daily work to facilitate my life, I would be sitting in a corner, staring at a television.
Instead, I don’t have enough hours in a given day to keep up with my projects. When I am not working on my novel, I am studying for my PT certification. I spend time working in advocacy and support for those with epilepsy and those going through bariatric surgery.
And, of course, I write the words you are reading right now. About 100,000 of them every year, in fact – on Misdirected alone.
None of this would happen without caregivers.
If you are a caregiver, sincerely, thank you. You are shedding light into very dark corners. And, on behalf of those of us whose conditions make us unable to communicate any appreciation to you, let me say this:
You are single-handedly changing someone’s world for the better.
How many other jobs give you that opportunity?