April showers have delivered ALS Galas across the country. A new pALS friend of mine offered me a ticket to the Gala held in Minneapolis. Did I really want to go to this? The effort in "showing up" was considerable! And, what would I wear? Since my diagnosis two years ago I have pared my wardrobe down to the bare essentials: the items that could easily be slipped on (and off), and those that would survive nearly any setting in the washer/dryer. Two other friends gleefully bought tickets, delighted to have a reason for dancing and fundraising. Then when I discovered my ALS doctor was the featured speaker, it pretty much decided itself. I would accept the gift ticket, and follow my new mantra: be brave, be creative, have a little fun.
Friends and family rallied around. My sister in Chicago arrived with a perfect sparkly jacket from a thrift store. One of my daughters offered to prepare my hair and makeup. And my dear caregiver/husband was the personal driver taking Cinderella to the ball. I decided to use my portable electric chair for the second time ever. In the mornings I get by pretty well with my rollator walker, but 6-9pm is not exactly my finest time slot, no matter how much energy I conserve during the day. After navigating the busy and cramped drop off zone for the hotel, I was off to the party!
The first thing I noticed about riding into a social situation in a wheelchair was the need for a "cowcatcher"--something gentler than tapping people in front of me on the back of their heels. Very hard to squeeze into a crowded elevator, or stand in a line at the bar, or even move to a different place at the event. People have their backs to you, and how do you say "excuse me" with a wheelchair? A friend suggested bursts of a recording like they have on ice cream trucks.
Next, how do you Mingle? In my past life, I quietly moved myself to where a person was that I wanted to talk to, and waited for a break in the conversation. No more subtleties! Here I come, a motorized person, off to your left! Or, do I shout and gesture across the table to an almost stranger, "Come over here! Let's chat!" Or do I send an able-bodied emissary, "the gal in the sparkly jacket would like a word with you."
After several hours and many lovely conversations, my neck was exhausted. I understood what a kindness it was for people to sit down beside me during our exchange, or to scooch on the floor to talk to me. Dear friends might bend at the waist to talk in my ear, but that implies a certain permission to break into your personal space.
Finally, how do you hug from a wheelchair? You know, the little social hello and goodbye hugs. Another tune from your control arm, like Tinkerbell's fairy dust?
Dear ALS community: I look forward to your creative solutions.