I feel like I’m always counting steps. I spend each day in a constant analysis of how far away things are and how much energy it’s going to take to get there. Sometimes even just planning what’s going to happen between point A and point B is so tiring that I’ll need a break before I even get moving.
I realized the extent of my situation a few weeks ago. An unfortunate legal battle requiring my presence in the court room brought me up close and personal with an issue I’ve been refusing to face for some time now. I’m getting to the point that my health is interfering with my ability to be independently mobile. In other words, at 35 years old, as a single mother of three kids, my condition has deteriorated to the point that I need to talk to my doctor about using a wheelchair.
I’ve been struggling with my cane. For short trips I often leave it behind, because it is exhausting to use. My entire arm hurts after heavy use, from my hand all the way to my shoulder, and into my torso. But, if I’m walking more than about 30 feet or standing upright for more than about 30 seconds, I need the darn thing for balance and support.
Often just the thought of making it from my driveway to the front door is enough to move me to tears. I’ve fallen on that path more times than I can count. My pedometer counts 13 steps from my bed to the bathroom, but please don’t ask me to count the number of times I’ve had to pause for a rest, or to catch my breath, or to make the spots stop floating in my vision along that particular way.
Anyway, my morning at the courthouse on Friday ended with about three times my usual daily step count being accrued in a matter of a few hours. In addition to the extra “mileage” hobbling along with my cane, there was the need to remain at least somewhat presentable, which meant not collapsing into a heap of pain and tears. It meant being seated upright on chairs and benches of varying levels of comfort and support. It meant acting in a calm and professional manner, even though the fluorescent lights made my skin crawl, and the crowded rooms and hallways made my anxiety skyrocket.
All of that and everything else, plus the walking! …So much walking. The handicap parking was closer than the parking garage, but still across the street and half a block away from the entrance. Of course it was the last courtroom on the left along what seemed like a hallway with no end.
It had been well over an hour of trying to stay upright whilst looking and acting like a person before I couldn’t hold off a bathroom break, or the excruciating pain and exhaustion, any longer. I found the bathrooms in what would have been a centralized location off the endless corridor, had I been in courtroom two or three. I hobbled there in tears, did my business, washed my hands and face, took a deep breath, and tried to be a person again.
I also decided right then that it would be a good time to utilize one of the extra doses of pain medicine my doctor prescribes each month for breakthrough pain. There were water fountains handy, but unfortunately I had left my medicine in the car. The car that was down the endless corridor, out the main entrance, half a block away and across the street. Faced with the prospect of taking the first step of that little journey (nevermind the rest of them), I asked for help. As luck would have it, my mom had arrived for moral support and she was able to make the trek in my stead. Thanks to an empty stomach, after twenty minutes or so I wasn’t crying or writhing in pain in my seat anymore.
I have no idea what I would’ve done without help, because I’m just about positive I wouldn’t have been able to take my medicine without it. My body simply did not have the capability to do the things I needed it to do. When I finally got home, after well over three hours of the torture of trying to look “normal”, I collapsed. By the Monday after, I had still barely made it out of my bed for the barest of essentials. Three days after that, and I was still recovering from three hours of what a healthy person takes for granted every single day.
I’m scared to use a wheelchair. I’m certainly not going to beat around the bush about that. I’m scared of judgement from strangers and from people I know. I’m concerned that I won’t be able to manage the chair by myself. I’m worried about a lot of things that I’d never thought I’d have to worry about at the age of 35, but I’ve decided that I need to do whatever it takes to stay active. With that goal stated, the use of a wheelchair may seem a little counter-intuitive to some, but if it means I can get out in the world and do things without taking days or weeks to recover from the effort, I think it’s worth trying.