Sunday, a friend took me down to the South Main district of downtown Memphis. It was like being in a new city. There have been changes to the area over the years, but mostly it’s my own world that’s gotten smaller. My friend pushed my wheelchair up a pretty steep street, then we turned around, and we flew back down the hill. He held onto the wheelchair handles, ran with me, and steered me clear of bumps and divots. It was scary and thrilling. About halfway down the hill, I stopped gripping the arms of my wheelchair, threw my arms in the air and sang out woo-hoos of sheer delight. All the anxiety, sorrow, and fear that had taken up residence in my soul blew away like so many cobwebs.
When we got back to level ground, I felt 10 years younger. I also felt my exact age, my exact physical state –whole and healthy in my deteriorated and janky body. I haven’t felt that carefree in a long time.
And the truth be told, it was a spontaneous moment but a lot of preparation went into it. My every day preparation is complicated. I have to have medical supplies at the ready, I have to take medications several times a day, I have to eat carefully, I have to have a well maintained wheelchair and a proper cushion. That’s an everyday thing, no days off.
(I have Hereditary Spastic Paraparapelgia, a rare disorder, that is genetic more than hereditary. You can find more information here. Though I have to say in the 40 plus years I’ve had it, I’ve had several other diagnoses. No one knows quite what to make of me.)
The past few months the weight of all I have to do just to maintain a small life has felt overwhelming. We are all, of course, in a state of aging and changing. Our friends have faced challenges, our friends have died.
The past few years, the pandemic has made getting medical care more complicated. I have gotten sick and weak in ways I haven’t had to deal with in the past. My doctors have changed my medications with not good results. The world around me seems to make less and less sense, I seem less and less powerful. Since the fall of last year, I’ve felt my creative spirit shrinking, felt too weak and depressed to paint. I can gather up the energy sometimes, but the daily flow of my life seemed to have slowed to a trickle. My vision narrowed.
I’ve been in the midst of such depressions before and I always try to remember what I’ve already been through, that there is another side, once I make my way through a rough part in my journey. We are all travelling difficult journeys. But I hadn’t been able to get out of my depression these past months. Good things happened, but my basic mood remained low.
Then one day, the angle of my little patch of the planet shifted toward the sun so that even rainy days seemed brighter. A friend on Facebook asked me to post 10 pieces of my art, one a day. I decided to do that by posting one piece from each of the past 10 years.
Because of that, I was able to see where I’ve been very productive some years, others not so much. I can see how I’ve grown as an artist. I can see how I’ve changed art practices when I needed to because of lost strength and ability. I can see my very own record of how much I love life, how much delight there is in it, how the sorrow and happiness all blend together to make a rich, color saturated life.
Since I have a tendency toward depression, when I have an exacerbation in my degenerative condition, I always wonder if life is worth living if I can no longer have what I’ve lost. Limping, needing a cane, needing a walker, needing a wheelchair, needing pain medications — needing some kind of assistance for almost every part of my existence. I learned to give myself a year to adjust to the new me, the new symptom, and see how I feel about it. So far, something always happens to delight and encourage me, and make life seem a wonderous thing to have.
And Sunday, it happened again.
One thing that’s been hard when I’m using my portable manual wheelchair, is trusting others to steer me safely. (That has more to do with my own fears than with the people who help me.) I’m always looking at the ground. In fact, I’ve been looking at the ground a lot since I was a teenager and started limping, started this journey with a degenerative neurological condition, looking for things that will trip me.
Sunday, my friend kept pointing out @poetrybyboots poems stenciled onto the sidewalks. I was a little alarmed that I hadn’t noticed them.
And then I realized it wasn’t that I was less observant. I was looking at the sky. I trusted my friend. I trust my friends. Interdependence isn’t as scary as it used to be. That realization opened so many memories of how helpful all my friends are to me in so many different ways.
And it was then I realized I was on the other side of an uphill struggle. Flying down hill, alive, alive — and so so glad.
Some art work from the past decade, and a few years more, starting with a fabric sculpture I made in 2010, called the Survivor, an homage to breast cancer survivors. A few years later I didn’t have enough strength in my hands to keep doing this kind of work, so I began to draw and paint.
So, with a little help from my friends, I’ll try to keep making my small contributions to this world while we all spin around on this complicated planet.
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