Humble Pie

According to general society, the top 3 things disability can teach a person are:

1. Perseverance
2. Patience
3. Humility

(And how to mix your medications for the optimum desired effect without killing yourself, but I was going for things that sounded a little less shady.)

Perseverance, I have down -- at least according to my new therapist. Personally I think there's a little less persevering going on than there is grumbling and doing things anyway because I can't always convince other people to do them, but whatever. Maybe that's an alternate definition.

Patience, I will never learn. Apparently I was already headed off to the next class when I should have been taking notes on the whole patience bit. They are suspiciously absent from my personal annals re: how to live respectably as a cripple. Warp speed is not fast enough for me. I have to go faster. I also expect everyone else to go faster, which has led to my own version of road rage: astride my little red scooter, I have been known to sit at crosswalks and shout things like, "Are you going to hit the gas, or do you plan on sitting there for the next year?!"

Humility, I am actually learning. Not because I want to, mind you -- truth be told, I'd rather elbow everyone else out of the way, do it myself, and be the greatest ever at it, because I really, really like knowing things and then showing them off. I can be an incredible smartass like that. Even my best friend has told me to shut up and stop correcting her before she pops me one upside the head. Intelligence -- particularly my own -- can make me just a *little* too happy sometimes. So now you know, if you didn't already: I am impatient and prideful. Maybe that's why I'm stuck in this crooked, slow, clumsy body -- because without something to take me down a notch or two, I'd go around thinking I was the greatest thing since the Big Bang. (Come to think of it, maybe this crooked, slow, clumsy body is supposed to teach me patience, too ... dammit.)

Many of you know my ambivalent relationship with Christian Scripture, but I gotta tell you: sometimes, things are right on. When you have Cerebral Palsy, pride literally does come before a literal fall quite often.

"Wait! The ground is better over here; try coming this way."
"I got this! I'm just fi --"
Crash.

The problem with disability and humility is twofold, at the very least. First, there are all those times when it appears to the able-bodied world as if you need assistance, but you don't and you know it. In such cases, attempts to explain otherwise are seen as signs of stubbornness or pride when really, it's just a matter of, "I've been doing this for over 2 decades and I really, seriously, honestly, do not need your help." And it's almost impossible to convey the other side of that coin, which is when you don't want the help not because you're prideful, but because the able-bodied person is just helping the wrong way.

Let me try to explain what I mean. Sometimes, the able-bodied are so eager to assist the disabled that they just. don't. listen. For example, when I fall and someone tries to help me up, the absolute worst way to do it is to hitch your hands around my waist or under my arms and pull me up from behind: my legs are not strong enough to push me upright from this position. I end up dangling there with my knees helplessly bent going, "Wait! Stop! Drop me right now!" It hurts, and dammit, it's embarrassing. The best way to help any disabled person with anything is to listen to them first. We will tell you what we need -- but the teaching moment so often gets lost in the surge of well-meaning, and everything turns into an ego disaster for everyone involved.

Then there are the times when you, the disabled person, genuinely don't know whether you need help or not. There follows a lot of starts and stops and inner dialogue as you wrestle with the whole Safety vs. Independence issue, i.e.: "I could probably handle this. But what if I drop it and cut myself?" and so on. And if you choose to try it on the basis of not limiting yourself any more than you absolutely must, and -- Heaven forbid -- you fail, to you, it's a lesson learned: "Note to self: Next time you are in this situation, ask for help." But to other people looking on, it can be yet another time when you let your pride go before your fall. It doesn't help that disability is fickle. I know that what I can and cannot do can vary from day to day and is dependent upon a lot of factors, like what time I took my last dose of Baclofen or if the humidity is so high my quads are turning to string cheese, or if I have an ear infection and consequently my balance is more iffy than usual, etc. Sometimes I get odd looks when I ask for help with something I did with no problem the day before, or even earlier in the same day. I suspect there are those who just think I've come down with a good ole-fashioned case of Lazy, and because I don't always know how to explain the situation with brevity, I allow them to think it and rely on social constraint to see to it that I get the assistance I need -- after all, what kind of jackass refuses to help a cripple? It may be crude, but it's the truth, and I imagine it sucks for you able-bodied people -- what if you  just want to be lazy? It's not allowed. You have to help, or risk being labeled a jackass. Of course, there are those who don't care about that sort of thing. More power to you, I say. It might be kind of refreshing to be told to feck off once in awhile, just like everyone else in the world, instead of being pandered to.

And then there is the third issue: You, the cripple, really need help, and the situation is so ridiculously humiliating you really are letting pride go before your fall. In the past few years, for example, I have lost much of my ability to bend at the waist. I can do it for a few seconds at a time, usually just long enough to snatch something off the floor. I have adapted to this with reaching devices and -- when no one can see -- actually getting down onto the floor and crawling around to do stuff. If I need to straighten the living room and I'm already hurtin' and there's a lot of little things like beads or change or cat toys laying around, I just drop to all fours and the problem is solved. But last week I ran into a situation wherein bending was not possible and crawling would not have helped even if I wasn't in public at the time, which I was.

My shoe came untied. Big deal, right? Bend down and tie it. Except I can't anymore. I can only describe the effort as a series of swears brought on by severe pain and the eventual crumpling of Tif to the floor, trying to decide which of her body parts to rip off and throw across the room in frustration. And I refuse to wear those elastic laces. Those things look SO STUPID. I'm 28. I still have standards. My solution is to take the time and effort in the mornings to make sure my shoes are tied so well that undoing them practically requires a knife because you'd rather cut through the damned things than spend an hour undoing the knots. This works admirably well -- except for when it doesn't.

I went for a walk at the river. I pried off my shoes and crawled around on the rocks and then I put my shoes back on, all the while balanced precariously on the single stone I could find that was wide enough to accommodate what I affectionately call my, "ghetto booty." Then I went off to Fox's for dinner, and on the way out, exhausted, arms akimbo in crutches and everything set to make it back to Bolt outside the front door, I realized my shoelace was undone.

Inner dialogue went something like this:

"Ignore it."
"You'll break your neck."
"So sit down and tie it."
"But that would mean putting my crutches back down, and I just picked them up, and I'm so tired."
"So ask the cashier to tie it."
"But ..."
"Well?"
"I really miss the days I could tie my own [expletive deleted] shoes."
"I know. But what other choice is there?"
"Fine."

In the end, I asked for help. And I got it, and so I went back out to Bolt without having to put down, pick up, and rearrange my equipment and all the stuff on my person, and without being prideful and maybe breaking my neck. It was a big, smelly slice of humble pie, and I shut up and ate it. I hated it. Humility and I are not pals. But if there's one thing disability will do, it's humble a person. I never thought I'd ever, ever have to ask someone else to tie my shoe after I learned to tie at age five. And there I was a few months shy of 28, smiling and thanking the cashier as he tied it for me, when what I really wanted to do was curse everyone in the room for being straight where I am crooked and whole where I am broken -- as if they could help their bodies any more than I can help mine. Usually, I am nowhere near that bitter. Usually, I make it into a joke and move right on. This time it took me a few days, but I did it. I leave you with the thought that finally made me happy:

How many of you guys can basically say, "You, you right there, come over here and tie my shoe for me." and have someone actually do it?? I should not be embarrassed. I should feel like royalty. I am Tif, Queen of Not Having to Tie My Own Stupid Shoes.