The combination of this week's unseasonably warm weather and finally acquiring my new hot pink power wheelchair, has gotten me outside in my neighborhood. (Have I been taking a "walk"? No - roll?, stroll?, jaunt?. Let's go with stroll.) Sometimes I've been out strolling with Adam, or some good friends. But most of the time I've strolled around by myself. This new sense of freedom is glorious to me. Strolling around the neighborhood by myself, kicking the wheelchair into the highest speed it will go, the warm breeze blowing past me, unaccountable to no one but myself. Stopping when I want to look at snow crocuses in bloom, or the running of the creek, or how my neighbor's dog sits so elegantly just inside the storm door. It's a new sense of freedom yet something vaguely familiar. Like the first time I went out by myself after my babies were born.
Earlier in the week, I strolled by my friends Janet and Johannes who were out walking their dog. They were stopped having a conversation with two other neighbors and their dogs. Janet very kindly introduced me to the neighbors, one who I have met on a few occasions. I shook her hand and said "oh we have met before." This neighbor looked confused as she was trying to recall a time she had met this middle aged woman in a hot pink wheelchair. Sweeping my arm awkwardly over the wheelchair, I said "this is pretty new". She smiled kindly and we went about our conversation, talking about dogs and the weather and other neighbors we hadn't seen in a while. As I continued on my stroll, I thought a little about how we define people. Am I going to be defined as the woman in the wheelchair? Or the neighbor who has ALS? Or the crazy lady who speeds down Pine Knoll Drive in the hot pink power wheelchair with her crazy hair and poncho flying in the wind? Probably. I decided I don't care. I know I am more.
On Monday, a dear friend invited me to have lunch on Thursday. There was going to be about five of us, and I was excited to go. Yet fear initially took over my decision and I declined. I can no longer get up off of low toilets by myself, and I kept thinking - what if I have to go to the bathroom? What if I can't cut my food? And how would I get there? I really want to use my power wheelchair as much as possible, but Adam would be at work and wouldn't be able to use the van to drive me. Fear. All the things I can't do. All the I want to but...I don't want to inconvenience others, or I don't want to be seen weak, or dependent, or less than.
And then, a glorious thing happened. Another friend from this group reached out again, just at the moment when I was thinking "Deb - what the f#ck! These people are your friends! So you need help! Big deal! Go out to lunch!" So, I did. Adam and I gave my Dad a brief lesson on how to use the van, and he drove me to meet my friends for lunch. I ordered food I was able to eat independently AND was delicious. When I needed to go the bathroom, I asked for help. My friend helped me get up from the toilet, and I got over it and it was okay. I didn't let the fear control me.