I am not your inspiration.
I am not someone to look up to.
I am not someone to admire.
When you place me on this pedestal, you separate me and stop seeing me as human and hurting. So stop seeing me as a hero and see me as struggling because today I am struggling, and need someone to see me as I really am.
Today my MS has the upper hand, and all I can really see is the mess my house is, and the spasticity present in my arms, legs, ribs, back and neck just won’t permit me to do anything about it. Hire a house keeper you say, as if that is simply the easiest thing is the world. It isn’t for me. I want to do things with my money that is more than just filling holes because my body is continuously falling apart. Spend on physiotherapy because my particular health insurance only covers it up to $500 then it’s 100% out of my pocket until it costs me $2000 and then we’ll start covering it again, but be thankful you had a career that gave you extended health coverage. Pay for massage because because that’s really what actually helps my muscles, but we’ll only cover $300 for the year (3 sessions and I have to go once a week if I want some quality of life.) Spend on medication (Once you hit $3000 out of pocket, then we will cover 100%) I’m lucky, so lucky to have extended health coverage. I guess I should also feel lucky that I have been medically cleared for the next round of Mavenclad and its $64, 000 CDN/year price tag means I’ve more than met that benchmark for a 6 month reprieve in drug expenses. I’m lucky that I can afford the health insurance, that my grit, intelligence and luck got me into my career that had such “perks.”
Let’s be realistic, though. The spasticity that saps my energy, and makes movement painful, shaky, limb fatiguing and means my house never gets picked up properly hasn’t been under any control since 2015. I’ve been in in-patient rehabilitation and I have no idea what I was supposed to get out of that. I did get, and still use an Ankle-Foot-Orthotic for foot drop when I can actually walk. My medications weren’t adjusted. I did physio there, but again nothing really changed. If it wasn’t for my neurologist trying her best with the medications she feels okay with playing with, I think I would have lost my mind by now. I have tried everything I can think of that’s safe and reasonable and not adding more to stressed finances. I haven’t mentioned the $3-5k a year that I have spent on medical grade cannabis just to get some relief, but the combination that gives relief is not without side-effects. I’m tired of masks. I know it’s better than opioid level pain relief, but opioid level pain relief is actually covered by my extended health insurance and is not taxed even through it is as reviled and vilified like THC cannabis is.
This is me face down on the mat, and one of these days I am not going to get back up. This is me at my most defeated – most un-heroic. This is me sans war paint and rallying battle cry. Will you turn your back on me? or Reach your hand out and help me off the mat ? (Psst… I will get back up this time because it’s the only thing I actually know how to do. Just please stop making me your hero.)