Just Ask

A sad fact you will eventually learn when you are coping with becoming disabled is that sometimes even other disabled people are full of judgement and bias.  I don't see it all the time, but often enough to never forget that it's out there. 

Here's a recent example:  as we were leaving a restaurant and getting into the car, a woman stood on the sidewalk in front of us, waiting while her husband sat in their car in the parking lot. He was waiting to take the handicap spot we were about to vacate.  This woman watched my husband load my wheelchair into the car while I got buckled up and turned it on.  From the driver seat, because I always drive.  No big deal, people watch us load our family in and out of the car all the time, and I often get weird looks about it that I try to ignore.  I get it. It's hard for people to understand why I need a wheelchair and a handicap parking spot if I can drive and stand up and take the few steps from the car to the chair and back again.  But this lady didn't stop with a questioning look or a confused look.  She stood there and glared at me, without looking away.  Unashamed, righteous loathing just streaming from her eyes right into me. 

When my husband finished loading the chair and got into the passenger seat, he and I made eye contact, and immediately we both knew that we both had seen the way she looked at me.  He said, "I almost walked up to her, right to her face, to bark at her whether there was anything she'd like to ask me about my wife's spinal cancer."

I breathed a sigh of relief.  Relief that he was ready to defend me but had opted not to create a public scene that I would have found embarrassing even if it was justified.  "I know what you mean," I said. "Apparently I'm not handicapped enough to earn a decal parking spot in her eyes, even though she can stand there for five minutes to glare at us, and her husband can obviously drive as well as I do."  

I backed out of our spot and drove away from there without speaking to them, but I couldn't stop thinking about it.  I'm tired of getting those glares, and the skeptical looks, and the dismissive eye-rolls.  "Maybe the answer to how this keeps happening is to become a kind of public spokesperson for myself.  Just get it out there and be obvious about it," I wondered while I got on the freeway.  "Put a sign on the back of the wheelchair that says something like 'Ask me how many times I've learned to walk' or 'Feel free to inquire about how EHE cancer affects my family.'  Maybe I need to just willingly explain it to people, wherever we go, and that will help them understand and maybe they'll donate to EHE research or something."

But it's a frightening prospect.  Am I really ready to take on being a public figure for something this big? Do I know enough to be a good ambassador for EHE patients? What about when I'm feeling shy or depressed and I just don't want to talk to strangers about it? What if explaining the outlook or prognosis of many EHE patients to strangers only serves to make my own children more afraid of what will become of their mother?  What if EHE patients who aren't disabled by their disease would rather have a different representative, someone less focused on life with a handicap and more fervent about early detection and experimental treatment options?  There are so many facets to this disease, it affects different patients in so many different ways, it seems unlikely that any one person could hope to represent EHE.

Thank goodness no one person needs to.  The EHE patient community is already out there, reaching out to strangers with EHE t-shirts and wristbands and fundraisers, spreading the word about the myriad challenges of EHE and drumming up public support for more research.  Bless their determined hearts!  So I remain free to maintain my primary focus on the disability side of my situation, working in my Homeowners' Association and my community and my greater metro area to promote better access and quality of service to handicapped citizens.  So allow me to take a moment to explain why I still need and make use of a wheelchair and handicapped parking.

Imagine that your spinal cord is an analog telephone line.  For you younger readers, that means it requires a physical cord to transmit a signal from point A to point B, unlike a Wi-Fi system where phone signals can be broadcast through the air without a cord or phone line.  In this analogy, data from all over your body such as temperature, position of your feet, whether your muscles are flexed or relaxed, whether the ground you stand on is even or bumpy, all of this data is transmitted from your nerve endings to your brain via the analog phone line in your spine.  

For most of you this phone line is in fantastic shape, it's well-insulated from weather and movement and provides excellent signal clarity, so that at all times your brain is self-aware of every necessary inch of you.  When you become imbalanced, your phone line allows for instantaneous communication from the brain to your limbs, and your arms and legs move almost immediately to correct your spatial positioning and prevent you from falling.  You can walk for miles, without ever worrying about a dropped call sending you sprawling face-first on the sidewalk.  And if you become too warm while you walk, your internal air conditioning system will automatically turn on, because your flawless phone line allows communication directly from your skin to your thermostat, which tells you to sweat. You could stand for hours, and your feet would shuffle around to keep you comfortable, your back would request an occasional stretch and change in position, but you could go right on standing all the while.  

The difference between most of you and me is that my phone line is damaged.  In some places the copper wiring is exposed, and the signal strength is not 100% reliable.  So I get dropped calls, in other words, my legs sometimes buckle, and my thermostat can't always talk to the rest of my body. If I stand up too quickly, triggering a little chiropractic-style "pop" in my lower back, I get a dropped call. If my kneecap pops while I'm walking, or my ankle or hip, I get a dropped call. I can only stand for a few minutes at a time, before my leg muscles get fatigued and start thinking about dropping my call. If I close my eyes or try to look around too much, such as trying to maintain eye contact with someone I'm talking to while walking or standing, I often lose my balance and risk having a dropped call. If I get too hot, my thermostat can't get in touch with my air conditioner, so I don't start sweating in time to maintain a comfortable, safe internal temperature. If I get too cold, which happens when it's only as cool as 50-60 degrees Fahrenheit, the signal from my feet to my brain is not strong enough to convince my brain that my feet are still there, and my brain will shut down circulation to my lower legs as if I were in desperate, freezing conditions, sacrificing my feet and toes to hypothermia if I don't take steps to artificially warm them.

I take a lot of precautions to prevent dropped calls.  Because when your phone line is as damaged and exposed as mine, the potential injury from a fall could be catastrophic. If I actually fell down, the impact could grab everything I've worked so hard to regain and take it all away again.  So I don't take big risks. I don't try to walk all the way in to a fast-food restaurant from the car, stand in line to place my order, and then walk all the way to a table to sit down.  I park up front in the handicap spot and bring my wheelchair in with me, saving my energy in case I need to do something really difficult and energy-consuming, like make a trip to the public restroom.  

So when you see me driving or taking a few steps to get in and out of my car, and you're left wondering why I deserve to carry a disability placard and park up front, just ask.  Stop glaring at me like you think I'm scamming the system somehow, or that I'm only sitting in a wheelchair because I'm fat and lazy.  JUST ASK.  I'll be happy to tell you all about it.