Invisible Disability Syndrome

Living with MS (Multiple Sclerosis) while travelling in a Volkswagon van in hot weather presents a few challenges.

But here’s an issue that is not so obvious. The front doors are wide, very wide. They require a lot of space to open fully. If you don’t open them fully, it is still possible to exit the vehicle by holding onto the door handle and sliding your rump over the wheel hub and sort of dropping onto your feet, then inching sideways till you have cleared the door and can close it. While this is less than graceful to observe, it’s not really that bad unless the wheel hub is wet from rain, or hot from sun, or otherwise very dirty, all of which happen frequently. Or unless I am feeling weak or uncoordinated, which happens when I overheat. Getting back in is trickier. So we tend to look for a wide parking spot, if possible, where I can swing my door open without fear of dinging someone’s car and I can exit the van without looking like an awkward three-year-old with my dress up around my ears.

While on our escapade through the sweltering Okanagan this past summer, we pulled into a restaurant parking lot and hubby parked in a wide handicapped spot, facilitating the safe opening of doors and exiting of the vehicle. I swung my door open and hopped down without a care and we headed inside for a cool lunch. As we passed by some elderly men sitting in the shade outside, one pointed out with no small degree of attitude, that we were parked in a handicapped spot. Hubby told him that I have MS, I explained that I have a SPARK placard hanging on the windshield. Usually that is enough to satisfy people, but not this guy. He got angry and defensive and said (among other insulting things) we should leave the spot for someone who needs it. Hubby got angry and defensive and started trying to explain why I need it but the old coot was having none of it, he was determined that if I could walk, I was just fine and that we were abusing the system, blah blah blah . . .

When I first got my parking pass many years ago, I was in the middle of a very long, very difficult relapse. It was not uncommon for me to drive up to the grocery store, find no parking close enough and turn around and just go home. Back then I had serious energy, balance and draggy-leg issues, so parking at the back of the lot meant I would not have enough energy to walk all the way to the store and then walk all around it and back to my car. It was just too much. I had to go home and hope to get groceries another day. Receiving my parking pass was like magic that meant I could go shopping, or to the movies, or whatever. I got hassled sometimes back then because I looked fine, so I would exaggerate the walk or the limp a little if people were watching me get out of the vehicle, just in case they might confront me. It was humiliating.

Years ago, as I was just recovering from that nasty relapse, I flew alone from Vancouver to Prince George for my niece’s wedding. My first flight was Air Canada, and when they gave the pre-boarding call, I made my way over because … I’m not going to explain. I have MS and boarding a plane can be challenging for many reasons … the agent rolled his eyes as I went through and then immediately grabbed the microphone and issued a catty explanation that “pre-boarding is only for those with small children or disabilities, people who need it.” Humiliating. And the flight attendants on the plane refused to help stow my carry on … again, I’m not even going to explain why putting a 20lb bag in the overhead was very difficult for me at that time.  I was so exhausted by the time it was all over and I was tucked in at my mother’s apartment. SO exhausted.

One week later, I had to do it all again to get home. But this time I was flying Westjet. I felt nauseous when the pre-boarding call came, but I made my way to the gate where I blubbered an apology and said I have MS so . . . the first agent assured me that no explanation was necessary, a second agent came and insisted on walking to the plane with me, lugging my carry-on, my purse, and my jacket for me. He stowed my bag at the front of the plane so I wouldn’t have to deal with the overhead bins. The tears that squeezed out of my eyes as I buckled my seat belt this time were relief and gratitude.

It was around that same time when a new experimental treatment was making the headlines. It worked wonders for some, not at all for others. I was excited by the hope and I wanted to try it, I was exactly the type of person it seemed to be working for. It was not available in Canada, so people were fundraising to send friends and loved ones overseas for a chance at a cure. A friend wanted to start a fundraiser for me. Another told me I was selfish, that I would be drawing funding away from others who needed it more than I did. I felt wretched and I quietly declined the first friend’s offer.

My stomach still drops when I remember those times, my face still flushes hot with embarrassment, my breath still sticks in my chest and the tears of shame still brim in my eyes. But there is something else these days, something that feels a lot more like anger.

It’s an invisible disability. It’s an inconsistent disability.  It’s an unpredictable disability. But it is still an exhausting disability and if you don’t understand, I get it and I’ll be fine with explaining….but please, don’t be an asshole!

(I wrote this last summer, but never published it. This week I am dealing with some pretty nasty muscle spasms and intermittent double vision, so I’m housebound but unable to spend much time sitting at my computer to write. This flare-up will pass, as it always does, but I thought it might be timely to pull this post out of the cobwebs today.)

#SweetEsther

#InvisibleDisability