I know it’s meant with the best of intentions, but I wish people would stop telling me to rest and “do nothing”. Yes, I’m struggling, and yes, I look like shit (but thanks for pointing that out – wow, I feel so much better now). But here’s a thought for ya: have you ever considered that “doing nothing” for a person who can’t always physically do what they want, is not the same as “doing nothing” for someone who’s able-bodied and has the choice?

Living with an unpredictable disease like MS  FM  RCD, it’s not the unexpected forward pitches or the walking into walls, it’s not the spastic muscles or numbness, and it’s not even the relapses that bring blurred vision or slurred words that make things the most challenging. What causes me the most grief and angst and, well, trouble, is my own healthy as a horse PRIDE! By far!

And yet, that same pride (and fear, which is the distilled version of pride) is what makes it so I can put one foot in front of the other and keep existing. Classic double-edged sword.

Slowing down is one thing, but stopping the push forward is one of the scariest and most threatening things of all. The best way I can try to describe it is that RCD is like living on the side of a steep and greased mountain. You have to always keep moving to some degree, or you’ll slide backwards. Not that doing nothing isn’t sometimes appealing – hell, constantly struggling just to stay in one place is no picnic, and it’s often damned tempting to just… stop. But anyone who has lived with a handicap for any length of time and has negotiated some semblance of an agreement with their body knows that giving up doesn’t make anything easier – it just postpones the climb and slides you further away from the trail and onto a steeper pitch.

(Well, giving up makes things easier if you, ya know, give up give up. As in dead! It may be work but I quite like the view from my mountain, such as it is, thank you, and I’m not leaving without a fight.)

It’s no coincidence that I busted my ass to accomplish a lot around the house and yard this summer, knowing that I was going to be costing our family some major medical expenses. I pushed my luck pretty heavily (especially considering the high temps), and I spent the last month or so in some heated arguments and negotiations with my body as a result. My eagerness to pull my own weight and be productive didn’t start out as a conscious goal, but I’d be a horrible liar if I pretended that the price of my jaw reconstruction hasn’t weighed extremely heavily on my mind and emotions. And pride.

Because it’s orthodontic, implants aren’t covered at all by provincial health care, regardless of how medically necessary it is for me at this point. Doc doesn’t have dental insurance through his job, and I’m an independent contractor, so… yeah. I’m pretty sure family and friends are sick of hearing about it and I apologize if I’ve been crass and mentioned it too often, but it’s not every day that I cost us the equivalent of what had been, up until quite recent memory, more than an entire year’s income for our family of five.

I can’t quite wrap my brain around how I had to pay $24,000 for the recent surgery and the hardware, and it’ll still be another $10-15,000 for the prosthetic next spring, and I’m not even getting bigger boobs or a tummy tuck out of the deal!!!

(Why yes, I am Canadian, is it that obvious?)

$35-40,000 is a fuck of a lot of money to be spending on one person’s mouth, pardon the language. It makes me choke just thinking about it. If I had teeth, I’d be gritting them.

So with that in mind, I have been trying for quite a while to figure out a way to bring more income into our family, without jeopardizing what we’ve already got. And by that I don’t just mean money – there’s family time and relationships in general, my overall health and happiness, my existing job and interests… it’s taken a lot of years but I’ve carved out a balance that works pretty well and that my RCD has tolerated for the most part. That’s nothing to muck around with too much!

Because that greased mountain thing? It’s rather tricky to live normally on one. Sometimes it’s all you can do just to hold your ground, but other times you hit spots that are significantly easier to move across, and that’s when you forget about the climb, and the pack on your back is almost weightless, and you think “Sure! Hell, I can handle a full time physical labour job – sign me up!”

The thing is, after you’ve climbed, slid back, climbed, slid back, climbed, slid back enough times, sometimes you almost fear getting to those easy points, because you know they don’t last, and the pain of the disappointment and frustration batters and bruises you mentally and adds, like, another 40lbs on your back physically for a while, until you eventually get to a spot where you can shed it and start chugging along again.

Plenty of times I get to those plateaus and I’m the grinning dummy saying, “Hey, let me carry your load for a while! I’m feeling great and you look tired.” In that respect, there’s more than enough precedent and justification for my loved ones to get frustrated with me and tell me to just chill out when they think I’m pushing myself too hard.

But those are the times when I LOVE those plateaus. That’s when I take on more weight, even though I know it’s temporary, because it reminds me that I still CAN! That I’m still just as whole, and able, and useful, and strong as I ever was! Just… not for very long. But that short sprint refills my pride for the next time that I really want to do something and CAN’T, and I have to limp back and admit defeat, and choose a different path than the one I was hoping for.

Other times, I choose to slow down and just put one foot in front of the other and struggle to feel honourable in that alone. I become a big chickenshit and I don’t try new paths I come across, or even old paths I used to walk and love before, because I feel too worn out to handle failure on top of everything else. Which pains me to no end to admit to anyone, and no matter how many times I make that choice, it never gets easier.

But, see, here’s the thing: the simple act of making the choice, for myself, is a step. It’s a movement. Made under my own steam, and fueled by my own instincts and sense of my own body. And that means a ton. Yes, I misjudge and get off track at times (like probably now). But given how much of my pride and independence I’ve had to leave behind on this climb, don’t I deserve to make that call myself? I gotta tell ya, sometimes it’s the only thing that keeps me on the trail looking up.

I…

sigh

Ach, I’m all over the place on this post, aren’t I? Sorry. But I guess it’s not that inappropriate given the title and mountain metaphor. I just wish it was easier to explain, and for others to understand, why standing still in life and doing nothing isn’t helpful (or health-ful) to me, no matter how weary it seems to them that I am. (Or, often, it’s more a matter of how weary they think I should be!)

But they can’t relate, because they’re not me, and they’re not on the same mountain (thank God). They try to have patience and faith in my choices, and I love them for it, but it’s hard, if not impossible, for them to comprehend how it affects every aspect of who I am, far more than just physically.

Just like it’s impossible for me to relate to how difficult it must be for them to watch someone they care about constantly struggle. Both with her stubborn pride, as well as her self.

Oftentimes, I think I have the easier part.