Self-Portrait of an ALS Patient
By Ben Byer
1. BRAIN: This is the source of all of my problems, but my thought process seems to be intact. Somewhere inside this mass of jelly is a malfunction that is causing the neurons in my body to die off one by one.
2. EYES: One of my first symptoms was a twitching eyelid. I view the world in a different light than I did before. My eyes are the portals through which I experience life, in absence of other parts of my body.
3. NOSE: My sense of smell has diminished. I don't know if this is a symptom or not. Often filled with snot; it is a byproduct of other symptoms that I'm unable to blow or pick my nose effectively.
4. MOUTH: My tongue doesn't work properly, which affects speaking, eating and salivation. The daily grind. Everything goes in or out of my mouth: food, liquid, communication, my work; everything travels through this portal, and it is working less effectively over time.
5. NECK: The muscles are weak, making it difficult to hold my head up. Pain, cracking, weakness. Often, it feels as if my head is on a tethered line held up by some unknown force.
6. SPINE: This is the source of all atrophy. Somewhere inside this cord is a miscommunication, a deviation, a mishap that brings an unstoppable cascade of weakness to my limbs.
7. SHOULDERS: These don't work anymore. I never realized how important my shoulders were until they became relatively useless. They were always just there for me.
8. HEART: Pumping, but a bit faster than before. When I drink a glass of water, my heart-rate picks up. When I walk across the room, stand up, sit down, move left or right, my heart-rate picks up.
9. ARMS: Mostly loose skin. When I was younger, I had biceps. Now I have a remnant of a muscle that is identified as a bicep. I can feel the space between the bones of my forearm.
10. STOMACH: I used to eat like a horse. Now I eat like a bird. My stomach is shrinking.
11. DIAPHRAGM: Weakened – this is where it gets dangerous. Breath is life. This muscle is truly the one that I took for granted. Now, I exercise it daily with every breath I take.
12. LEGS: Stiff, but still working. I thank God every day that my legs are working, albeit a little bit less than they used to, but they are my best friends right now.
13. HANDS: The most useless and useful part of my body. Four and a half years ago, I was painting a house, and I felt a cramp in my hand. I had to peel my fingers back from the brush I was holding. I knew something was wrong.
14. FEET: My yoga instructor says I have good toe action. Maybe that compensates for my loss of balance. Every step I place them where they must be, for if I miss, I will fall like a tree.
15. HAROLD: Still works. My friend, my lover - the keeper of my most private thoughts.