Ever had to use a wheelchair to get from here to there? Now, I’m not talking about temporarily using a hospital wheelchair to nurse a broken toe or to be wheeled out of the maternity ward after having a baby. I’m talking about relying on a wheelchair to get around for an indefinite amount of time because walking is too painful, extremely hard or simply not possible.

When I was pregnant with Yohan, I developed plantar fasciitis. It was  1993 and we were  living in France at the time.  My french PT chose to implement jackhammer “massage” therapy on the bare bottoms of both feet to loosen up the tightened fascia.

“Zis weel feel veghrry good. Eet weel ‘elp wit zee pain.” Monsieur Rémy promised.

He turned on the pummeling device and went to work for what seemed forever on the right foot: GRRAKKA KKAKKAKKAKKAKKAKKAKK AKKAKKAKKAKK AKKAKKAKK AKKA KKAKKA AKK  (OW, OW, OW), and then the left: GRRRAKKA KKAKKAKKAKKAKKAKKAKK AKKAKKAKKAKK AKKAKKAKK AKKA KKAKKA AKK (Double OW, OW, OW). It really hurt but I figured, “No Pain, No Gain”  right? 

WRONG!!!

Long story short, from that day forward, 24 years ago, nothing will ever be the same. My life had forever changed. My brain translated the pulsating vibrations as a threat, leaving the soles of my feet to ache, burn, freeze, stab, and just plain hurt.  I no longer count the years, but the memory and the pain are forever etched in my feet and in my heart.

3 years later, Yohan, Gilles and I moved to California and my feet were still killing me. I tried everything, and I mean everything to alleviate the constant discomfort: acupuncture, medication, nerve blocks, psychotherapy, Tens, myofascial release, creams, gels, patches. Nothing worked, so after a lengthy and heated internal debate (the reality of using a wheelchair scared me), I  purchased a custom-built wheelchair.

Here are just a few highlights from the first year or two:

“Oh dear,”  laments an eighty-something-year-old in the grocery store. As I look up, she was peering down at me, pursing her lips and shaking her head slowly from side to side. “You are just too young to be in that chair.”  Um. No duh, but I am, for now, and by the way, why am I even talking to you? 

“Hey, this looks FUN!” yells a “friend” as he unexpectedly grabs the push handles in the back of the chair and starts to zoom me down the street, swiveling erratically to the right and to the left.  He thought he was brightening my day, adding a little zest to my boring existence. Careening down the street, I was furious with my helplessness, vulnerability, and especially Monsieur Rémy. The guy who was pushing me around? We are no longer friends. He’s dead to me.

“Well, Heeellooooo Sunshine!” singsongs a salesperson at Macy’s. How are you doing today? she asks, enunciating every syllable with exaggerated grimaces which made me wonder if she thought I was deaf and had to read lips to communicate. Then she simply turned to my sister and asked if there was anything in particular “she” needed, referring to me. Oh, I get it, she assumed that I was mentally and physically disabled. You have got to be kidding me. Her strategy: avoid all eye contact with the sitter and go with the stander, the one “in control” and who looks the most normal. Normal must be in the eye of the beholder because on that particular day, my sister, Kathy,  was dress as a blueberry…really. She was drumming up business for her summer business, Island Blueberries. 

On another note, if you don’t get killed, some of the following situations could be translated as funny…..years after the fact.

This is the real Kathy.

Kathy, bless her heart, always volunteered to push me around downtown Burlington when I visited in the summer. Going into the mall,  Kathy grunted several times in an effort to get the front wheels of the chair over the seemingly extra tall threshold (bottom of door frame). She pushed once (Hey, that was my back!…don’t use your knee!), she pushed twice and the third time….SCORE! The wheelchair unexpectedly jerked over the doorframe with such force that I fell forward, right out of the wheelchair and onto the cold, hard floor!

.

That very afternoon, I Googled: manual wheelchairs + seatbelts+ overly enthusiastic sister.

On a different day, we encountered yet another obstacle. The wheelchair ramp to the store in question was short and steep. It looked something like this:

Going forward was out of the question, so Kathy, with all her might,  pulled me into the store backward. Gravity was pulling me forward (I had not yet received that damn seatbelt). It felt like I was going to tumble out of that chair, and roll into the street. She got me to the top of the ramp and wouldn’t you know it…the bottom of the doorframe was again, extra high (What is it about buildings in VT?)   I pleaded with her to just leave…it was not worth the trouble, but my sister does not back down when facing a challenge.  And she rarely listens to me, so I held on tightly, trying to shift my weight backward. Then I heard 2 employees scream, “WE’VE GOT HER!” and before I could say, “this is really embarrassing“, one woman  helped my sister pull, when the other suddenly appeared in front of me, and started pushing the arm rests to get the  chair into the building. With three people pushing and/or pulling, we made it into the store, but I had had it, I was done shopping for the day.

Today, we laugh when remembering those mortifying incidences, but to those who experience similar or worse situations daily, it’s really frustrating. Here are just a couple of tips when interacting with a person with a disability:

1. Respect Personal Space-many use mobility aids, so don’t touch, use, lean on or move the person’s wheelchair, walker, cane, etc
2. Speak in a normal tone
3. Talk directly to the person with a disability
4. Ask before you help

More tips to come. Have any to share?