Raising Cane

I am not a very gracious disabled person.

Lately people have been opening doors for me, trying to pick things up for me when I drop them (especially the cane, which falls over all the time in meetings), and moving out of my way as if I’m ten feet wide and may topple over at any minute.

I keep saying thank you for these niceties but in reality I am not expecting people to do things for me and so it’s currently more annoying than helpful. I sound so ungrateful, but give me a break; I’m new at being disabled. And I don’t really feel very disabled most of the time. Yesterday I bent down to pick up the dropped cane and almost bumped heads with the stranger who rushed to get it for me.

I don’t think of letting people help me; it doesn’t cross my mind. In order to not be perceived as a total bitch (Watch out! Bitch With A Cane coming through!) I have to stand there with a smile on my face while people fumble to hold the door for me, even though they are carrying packages and coffee and I could have done it faster and more easily myself and held it for them as well. But why fight with them about it?

This morning at the coffee shop a rather large gentleman ahead of me held the door for me as I tried to enter. In doing this, he blocked the entry (he was very very large). So I couldn’t get by at all … so I said “excuse me” instead of the “thank you” he was obviously expecting. He turned red with what looked like anger and said “I am trying to be polite.” I said “yes, but you are standing in my way! I can get the door myself and it’s easier for me to maneuver if you move.” He walked away, mumbling to himself; clearly he thought I was BWAC.

So it seems to me, when you are perceived as disabled, even if you are independent, and in particular when you are very busy and impatient and always in a hurry as I am, you have to suffer the indignity of people helping you, which actually slows you down more often than not. I suppose the good spin on it would be “it forces me to slow down and enjoy life” or “it makes other people feel good to help me.” But hey, it wastes my time, and if that comment doesn’t sound ungrateful I don’t know what does. BWAC.

Speaking of the cane … let’s dish on that for a bit, shall we?

I have found that even if I am dressed in a business suit, if I carry a cane the homeless people on the street don’t panhandle me as often. The guy across from my building who used to be relentless in asking for my spare change now just says “good morning” as I walk by. Perhaps he figures I have it worse than he does. Of course I don’t, but for some reason he thinks so.

Some people give me strange looks, or even looks of disgust. This is usually on weekends when I am dressed in jeans or sweats running errands. If I look a bit disheveled and walk with a cane, I wonder if people think I’m homeless myself, or a drug abuser? Could that really be possible?

People at work are either full of questions or totally silent, trying to look at the cane without letting me know. Sometimes they avoid eye contact altogether. People I know sometimes appear not to recognize me. Do I really look so different now that I have a walking aid?

Where do I put the cane during meetings? It falls over all the time and of course I’m trying to put it somewhere that nobody will trip on it. I haven’t found a good solution to this. Plus, how can I reconcile the fact that I’m using a cane and wearing (small) heels? I have to dress up for work; am I really going to wear sensible shoes just because I need a cane? Eventually maybe, but right now I can and will wear shoes that I like.

Using a cane is harder work than I thought. I actually feel like I’m getting a bit of a workout sometimes, and I arrive at meetings flushed if I have to walk far to get there. Yes, and I’m late more often than not – I can no longer make it from one building to the other and up the stairs in 3 minutes flat. I’ll need to start adding more realistic travel time into my daily schedule.

While right now I am very focused on my hips, I hope to get all my research done, second opinions done and surgery finalized, so that I can focus on living my life as more than a pair of joints. This blog makes it seem like all I do is focus on me and my singular problem. Right now that is the case, since I’m in “fix the problem” mode. I haven’t blogged, for example, about the historic presidential election, although I have lots to say on the subject. It’s not that I’m shallow (although my acetabula are, LOL, that’s some really dumb hip humor), it’s just that I can only focus on one major project at a time, and this is it right now. I truly hope to resume the rest of my life very soon.

The Big Betrayal

I sometimes feel betrayed by my body. All these years I’ve taken pretty good care of it. I’ve been lucky to have had very good health all my life. I don’t smoke, rarely drink, don’t overdo the caffeine even though I live in Starbucks Land, eat right, and exercise. I am the type of person my insurance company loves – no claims, just the yearly wellness stuff, and meanwhile I subsidize everyone else’s bad health habits. Until now, when we find out that hey, I’m all broken! I have to be taken apart and put back together again in order to work right!

I did pilates a couple of years ago to become more flexible. My back was pretty flexible and my upper body can do interesting things, but no matter how much stretching or strengthening I did, my bones wouldn’t change their shape, and so my lower body was as inflexible as a piece of wood. It was so totally frustrating. My pilates teacher, Angela, is a skater and I had private lessons with her. I stretched at home every night. She was patient and tried everything with me. I eventually just gave up in frustration.

I’ve started using the cane more and more, and will soon get crutches. Not that I really need crutches yet (although the cane has been helpful). But I want to learn how to use assistive devices now, while I’m still pretty mobile, and not in the hospital the morning after surgery when I’m wandering around in a drug-induced fog with my butt cheeks hanging out of my gown. It also may help to keep some pressure off the joints before I go under the knife.

I wrote an e-mail to my co-workers explaining what was going on so they wouldn’t be appalled to see me with a cane at work on a regular basis. I showed up at the rink with the cane for the first time just so everyone could stare at me without feeling badly about it and get used to the idea.

People ask questions once they get over the shock. I know they all mean well, but after a while I just want to wear a t-shirt or carry a sign, or maybe just hand everyone an FAQ sheet:

~No, I didn’t fall down and hurt myself. Boy, do I wish that’s all it was!
~No, I’m not “injured” – my body was put together wrong.
~What happened? Well, actually, nothing “happened,” I was born this way.
~Thank you for saying you hope I get better soon, but I won’t get better, I’ll only get worse until surgery fixes me.

Carrying things while using a cane is difficult. I have a purse which is really a backpack and I dug it out and it works great! I think crutches will be really, really super-specially fun. Being on them may cure me of my daily latte habit since I see no way to carry a hot cup of espresso in the backpack while on crutches. My husband, who is very handy, will probably rig something up to make this possible. Although I suppose I don’t really need the crutches to cross the street and get coffee. After all, I can still walk on my own for now.

I wrote this in an e-mail today to Angela:
"It has been an enlightening journey to find out just how badly put together my body is, but it explains so many things about my inabilities and physical challenges throughout my life. It's good to know it's not just that I'm lazy, or that my muscles are tight, or that it's all in my head. It's a relief to have a reason now."

Hurry up, and wait

I am 45 years old, and I'm in pretty good shape. I've always been athletic, I dress fairly "young," and thanks to skating I've stayed out of the sun, mostly. So I look my age and by some accounts much younger (depends on the light level, the distance of the viewer, and the number of alcoholic beverages the viewer has consumed). This information will make sense as this story unfolds.

At work I walk fast, I take the stairs most of the time, and I'm usually walking around the office vs. sitting around. Well, up until recently anyway. Now that I have difficulty walking, I tend to walk much slower than before - noticeably so - and I have a lumbering and unusual gait until I get "warmed up." I can't always sit for long periods of time (I am getting a "sit/stand" workstation shortly).

So based on the fact that I look youngish, healthy and fit, people make certain assumptions about me. Like, if they hold the elevator for me, that I will pick up the pace so they don't have to wait. But I don't pick up the pace any more, and this has caused some people to roll their eyes and give me hostile looks. "Come on, we're waiting for you, the least you could do is hurry up!" "Hey lady, you're wasting my time!" That is what those looks say to me. Now I just wave to them from 20 feet away and say "go ahead, don't hold it for me." Let them think I'm lazy or don't care.

I took the elevator up one flight of stairs the other day, something that I have never done before, but the thought of climbing the stairs was just unnerving at the end of the day. I could almost see people shaking their heads as I got on the elevator on the 10th floor and off on 11, and I imagined what they said after my departure. "What a lazy ass!" "She's the reason our health premiums are so high!" "Wow, she doesn't even look like she feels guilty for wasting energy!"

I realize that I'm projecting my thoughts on other people, and whether the dirty looks are real or perceived, I'm probably imagining some of this. Is this how my own guilt and embarrassment over my new condition is manifesting itself? I'm not really sure.

I am thinking of borrowing a cane. Not that I need it quite yet, although I may need it soon. But with a cane in my hand it will be obvious that I am not just walking slowly because I'm lazy, but because I have a medical need to do so.

It's sad that I feel I need a "prop" in order to walk slowly and stiffly in my office without embarrassment. But I've always prided myself on my athleticism, the fact that I can walk anywhere on my own two feet, my independence. Perhaps I'm dreading the day I lose all of that independence temporarily after surgery, or for good.

I work for a disability insurer. We always tell people in our marketing materials that the risk of disability is higher than they might think. As I wrote those materials, I never thought that I might be one of those who became "disabled" - in my 40's -- after all, I eat right, I exercise, and I wear my seat belt. And here I am, feeling a little bit more disabled every day. I look at the things I've given up over many years and more recently (jumping on ice, which I had just started back to; running for the elevator; hiking; walking unless I have to). I am not truly disabled since I can still work at my desk job with accommodations. But I feel disabled nonetheless. Disabled from my life, the things I enjoy doing and the things I have always taken for granted. It is a sobering experience.