Yes, I Need My Wheelchair, Even Though It’s 'Not Far'

As an ambulatory wheelchair user, I’ve noticed abled people have a very particular phrase they like to use when they can’t be bothered to deal with the extra “burden” of taking a wheelchair with them. “But it’s not far.” They may believe it’s not any further than I could walk around the house, but they’re living in another world. This is my reality.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Yes, walking around the house with perfectly flat floors, lots of things to hold on to, and places to sit including said flat floors is typically safe enough to go from room to room without my wheelchair. But venturing out of the house is an entirely different adventure.

Let me run through a scenario for you. Say I’m taking a car to somewhere, like the chemist’s. First is the task of getting into the car itself. It starts with what should be straightforward: getting out the front door. But when there are even shallow steps, they’re going to cause awkward hip rotations with each place of the foot, and consistent attempts to stop my ankles from rolling when I get up and over them. Slowly and carefully I lift over them, trying to breathe in time with the steps so my body won’t notice them.

Out the door and the driveway is a long shot. If there’s a pebble in the way that I haven’t seen, then that’s one ankle shot for the day. A gust of wind? Forget about it. I finally reach the car, already out of breath a little. My heart rate is starting to edge towards tachy. Then I get to the car, sigh a breath of relief, and hold my breath as it takes half the spoons I saved for the day to pull on the handle and open it to get in. I get it open, maybe subluxing a few fingers and a shoulder on the handle. Only the one finger if I’m really lucky. I sit down on the seat and try to drag my increasingly heavy legs up into the footwell. In safe and sound, I have to pull the car door shut with my whole body, throwing myself back into the seat. I’m exhausted, and I’ve only just gotten to the car.

I get to my destination and there’s probably no parking close by. I push with my whole body weight to get the car door open and spin to face the world. I find two vaguely supportive points on the car and pull with all I’ve got, whilst trying to find a balance on two wobbly feet. I probably pulled my shoulders out on the way up, but I’ll deal with that later, because right now I’ve got to try to balance my weight through my ankles and knees that already tried to roll on the driveway earlier.

Then I’ve got to get there. Pavements aren’t flat; if you live somewhere where they are, I’m infinitely jealous. Every small incline is like climbing Everest, my ankles have to reposition, the push off from the steps of feet to feet require constant thought to keep me moving along with everyone else. Heart rate? Through the roof. If I’m lucky it’s only in the 140s. I’m trying desperately not to faint because my feet are dark purple with blood pooling in them. If I need to sit down, I have the cold wet ground as my only option. My hips are trying to support my whole body and putting the strain to sustain me down my whole spine. The muscles around my spine are clinging for dear life. I painfully and carefully trudge to the building that seems to be getting farther away even when I’m moving closer and closer to it.

Once my marathon comes to a halt, then I get to go home and do the whole damn forsaken thing all over again.

There goes my energy for the whole week.

Sure — distance for distance, you might think it’s not far to go without a wheelchair. But for every step you take, my body feels like it’s taking a thousand.