It happened again. Just as I was starting to recover—ready to grasp a bright spot—I make more mistakes and go back to where I started.
Stuck in this cycle of slight improvement, push just a little too hard, then end up back at the beginning. Trying to reclaim that moment of improvement. Over and over.
I push you body to exercise when you can’t. I make you walk when paralysis has overtaken your limbs. I have treated you as the enemy for years when we were always a team. Always.
Sometimes I just get so tired, so frustrated, so angry at the ever-increasing limitations. So tired of being shackled under the weight of illness. Then I over-step, ask for too much, push too hard.
I ask for forgiveness.
I tried to have fun with my nephew a few days ago. I tried to play for just a few minutes.
But you can’t do that anymore. That's no longer within the parameters of your abilities.
I was bedridden for hours and couldn’t walk the next day. I have struggled to leave my bed and couch since. I don’t want my nephews, my family, my friends to remember me as a lump on the couch—someone who asks others what they’re doing, who listens to other people’s dreams and aspirations, who rarely leaves the circumference of a room. I don’t want this.
So I push myself too hard every day. I ask too much every day.
When I rail against my fate and make questionable decisions in protest of illness, you remind me that my limitations are serious. The consequences are real. My breath leaves, my limbs no longer move, any hope of verticality is dashed. Crash so hard and so deep that swimming to surface is impossible.
I rest in penance.
I rest in penance.
I ask that we try again. One more time. I’ll listen to what you tell me. I’ll ask no more than you can give. I’ll treat my limitations as sacred.
Because when we’re a team, we can do great things.
You give me energy to play music—to get lost in a melody for a short time, to improvise and roam in the geometry of sound. It is in those moments that I am truly free.
You give me enough energy to go outside sometimes and walk a few feet or look at the flowers growing in my yard. In those moments, I feel like I’m a member of the world again.
So we start over, start the cycle again, and maybe this time I learn from my past mistakes and press forward enlightened and wiser.
Ready to try again.