NOTES FROM MY YEAR OF LIVING DANGEROUSLY

Taking a Step, and a Seat, Toward Freedom

Crow’s Feet Writing prompt 49: Freedom

An excerpt from my journal, March 2015.

“ALS has its own gravity, strong enough that each repeated orbit is always just a bit smaller, a hair closer to the sun.”

- Dr. Bruce Kramer, from We Know How This Ends: Living While Dying

Dr. Bruce Kramer describes the gradual but inexorable failure of his body. Almost one year out from my own ALS diagnosis, I feel the same pull; a winding instead of an unwinding.

Or perhaps I am a fish on the line of a patient angler who is keeping the line taut but is in no hurry.

With my hands pressed against the wall in my shower, I try to take that image captive and replace it with the picture of a large fish racing away, a broken line streaming from its mouth. At the moment, however, I was mostly focused on not flopping like a fish.

When I was first diagnosed my physiatrist said that I could get a chair that fit in the shower and would let me sit down. “Thanks, but no thanks,” I thought to myself. Now, however, my legs are getting weaker. After a shower, I end up lunging for the bench in our closet to get dressed.

I’ve looked at shower chairs on Amazon, yet I couldn’t bring myself to order one. I have already given in to using a cane to get around — a little tug on the hook. A shower chair would be another, harder tug.

I’m fighting the line because, you know, sometimes the line breaks.

This morning in the shower, however, I realized that I could wear myself out trying not to die — to the point where I had no energy to live.

Rather than a limitation, I now see the cane as something that extends my ability to go where I want to go, to do things I want to do, to see people I want to see. Similarly, any energy I can save by sitting down in the shower (and health issues I can avoid by not falling in the shower) means more of my finite energy can go to visiting my grandchildren, going to the prison, or doing anything that allows me to make things a little better for someone else.

I can get a shower chair for free from the local ALS Society chapter, but I am back to work and can afford to buy one for myself, whereas someone else may need that free chair.

I try not to think about someday needing a walker, or a wheelchair, or something else. Like the cane and the chair, however, these will be a tactical retreat, not a surrender.

I commit myself to doing whatever I need to do to have the strength to be where I need to be.

I ordered the shower chair.

January 2024.

Freedom is at its most precious when it is at risk of being taken away. On a grand scale, it is a cause worth fighting and even dying for. In countless, more mundane daily decisions, it is a cause worth living for.

During the 13 months that I lived under a terminal diagnosis — my year of living dangerously (YOLD) — I fought for my freedom daily in a series of seemingly small battles. My freedom to move, travel, be present, and contribute was an ongoing challenge toward something. The greatest battle every day, however, was freedom from something: fear.

The year before I was diagnosed I had read Mark Helprin’s A Soldier of the Great War. A passage from it kept coming back to me:

“I am not afraid,” Rafi said. “Why not?” “If I die tomorrow, it will have been useless to be afraid today.”

Because, you know, sometimes the line breaks.

A note about “Wanderer Above the Sea of Fog”: the first time I saw this image it set off every chime in my heart and my spirit. I knew this was me, though painted nearly 150 years before I was born, and nearly 100 years before the YOLD. I have reached an observation point not easily obtained. I have my stick, my sturdy coat. A thickness at the calves could be my ankle-foot-orthotics (AFOs). I am facing the unknown future, and not turning my back on it. It would be useless to be afraid today.