She’s likely had it since at least ~1983; the first sign was a temporary bout of optic neuritis that left her half-blind for a month or so. All was well for years, until 1996: we were walking out of the DMV — we went so I could get my driver’s permit — and she suddenly stopped walking in the parking lot…and couldn’t move any further. After a minute or two of my asking what was wrong, and her looking a bit panicked and not knowing what to do, her legs started working again. Turns out, I had gotten my driver’s permit just in time; I drove home that afternoon.
In the years since, a lot has happened: diagnoses (“secondary progressive multiple sclerosis”), various attempted treatments, the walker, then the wheelchair, then full quadriplegia. My father, my wife, and a cadre of part-time nurses (thanks, everyone, for your contributions to Medicare/Medicaid/MassHealth) have helped her remain as independent as someone in her position can be.
No doubt, it’s been hard on everyone involved, but I think we’ve done okay, and made the most of a genuinely shitty situation. Of course, it’s been hardest on my Mom. I can’t imagine what it’d be like to be in her position (though believe me, I’ve tried), but — understandable dips in the road aside — she has remained remarkably upbeat, engaged, rational, and hilariously concerned with others’ well-being. Courageous, that’s what she is, and I’m so proud of her for it.
But, I write all this not to share my perspective, or tell my story, but to suggest that you should listen to her tell hers: she recently started a blog, Living with Advanced Multiple Sclerosis. If you’ve gotten this far in this post, you should go read it.
One thing that did decline as her disease progressed was her interest in her most fervent passion in life, literature and writing. She was an English major in college, and along with helping me become the language pedant I am today, she helped cultivate my love of rhetoric and the written word. While it was sad to see her stop reading and writing for so long (it can be hard to keep up with it when neither your arms or eyes work well, or at all), it made seeing her start to write again that much more joyful.
So, check out her blog, and pass it along to anyone that you think might appreciate it. I know she’d love to know that other people are following along, especially if they are also on a journey with a degenerative neurological disease like Multiple Sclerosis, Parkinson’s, Muscular Dystrophy, and so on. It’s no Shakespeare (something she’d readily admit; since her nurses type for her, she can’t meticulously edit and fret over every word for hours like she once did). No, it’s better: her unvarnished voice talking about life, something I love seeing on the “page” again.