I don’t think of myself as disabled. I’ve operated at a 50-70% hearing loss since my mid-teens, and have been offered disability status through the state Voc Rehab office – this was eight years ago, and I was just looking for a cost estimate on hearing aids ($$TooMu.CH) and was functioning fine as a therapist and such because I could read lips. So I’ve compensated where I can, and don’t think of it as a disability.
Then the back pain slid in, slowly at first, and accelerating at an alarming rate. For several months, it was an irritation, several days a week. Then it became an annoyance almost every day. I stopped considering certain jobs – retail and restaurant stuff, mostly – because I really don’t think I could tolerate that much time on my feet, day after day. But I kept trying to keep up with my normal routine, which now includes things like hanging laundry out on the line and making salsa from scratch because I’m home, and happy, and want to do the little extras like that. Some days I know right from the start that those extras are beyond me, and I plan accordingly. That doesn’t create a disability, does it? Since it’s not always that bad? That was my rationale.
Apparently, per Willem and my doctor, I tend to be fairly stoic when in pain. My take on it is that complaining and wincing just irritates or alarms other people, so why bother? I let people know if they ask, if there’s something I think they can do to help, or if it’s a notably bad day and I need help now please. Otherwise, it’s not that big a deal, I’ll just move slower and wait it out, right? I’m more direct with the kids, because the empathy muscles are not yet fully developed. But I also tend to minimize the degree of things because, um, they’re kids.
So that’s how things went, from sometime last fall until a few weeks ago. Then something happened – a small thing, barely noticed by those who were with me and not noticed at all by fellow shoppers – but significant enough to let me know that I have to start thinking differently.
It was about two weeks ago. We were at Target, buying too much, and among that list was a pair of new sneakers for Emily – the child is in size 3 Youth now. She will be shopping in the adult section next time. Gah. Anyway, I sat down on the floor to do the typical mom thing of feeling around the ankle, making her wiggle her toes while pressing on top of the shoe, and so on, and yes, great, they fit and she loves them. (I tossed in a comment about how they’re so snazzy and new and big, they look like they belong to a teenager – it stuck with her, she likes the idea. God forbid.) Once she had decided, she picked up the rejects, Jacob was prancing up and down the aisles with heavy doses of giggling, and I started to get up.
And I couldn’t. Just could not do it. I was on my knees, no problem, and lifted my right leg into the 90-degree, gonna-stand-now position… and was absolutely, completely stuck. Pain like crazy, and stiffness, and, yeah. A very bad moment. I did not freak out or burst into tears on the outside – It all keeps coming back to the kids, doesn’t it? Because inside, I was not coping very well at all. – and was able to casually say to Emily, “I can’t stand up on my own, can you please push the cart over to me?” I had to lever myself up with the handle, and was so so grateful that those puppies are top-heavy.
We got through the rest of our shopping, and I made it home, took meds, lay down, and breathed for a while. I’m slowly starting to absorb the idea that this is the new normal, it won’t go away just because I want it to, even if I do the PT exercises and walk around and stretch and rest and take medication and all of those other things I’m supposed to do. The medial branch block didn’t work, and I don’t know the next step.
I’m not looking for sympathy here, really. I realize how many millions of people have it worse than me, and how fortunate I am to be able to stick with a part-time at-home job instead of forcing my body to deal with things it shouldn’t be dealing with. I’m grateful that I don’t have something terminal, and that my husband and kids are overwhelmingly appropriate and supportive with it all.
I’m just writing it out and wrapping my brain around it, because I’m struggling to accept this new normal. No matter how bad I feel on any given day, I still find myself thinking, “Maybe I’ll be better before such-and-such an event. Maybe they’ll find some new drug that will do the trick.” It’s not that I need to give up hope, it’s that I need to readjust my own expectations into a more reasonable set of possibilities.
And I need to schedule in some white-water rafting, golf and perhaps a night in an ice castle post-haste, before this back stuff gets much worse. I’d hate to fall short on my 100 Things list just because of a stupid disability…