A Day With ALS

I’m feeling inspired by writer and ALS advocate Sarah Coglianese’s response to the question, “What do you do all day?” The breakdown of her day made me realize that how I live now is incredibly foreign to the healthy people reading my blog. I have shared what Virginia Woolf called “moments of being”, micro-stories that I hope give you a sense of how it feels to walk in my shoes. However, I have yet to hand you the structure of my days . Here is a rough schedule for my average, exhausting, rewarding day.

Morning:

  • Showering with the help of a professional bath aide
  • Getting dressed
  • Putting on foot braces to stem foot drop
  • Taking regular medicine and trial medication
  • Eating breakfast if I have an appetite

Afternoon:

  • Taking medicine
  • Eating lunch
  • Breath Stacking
  • Physical therapy (PT)
  • Appointments or correspondence regarding medication
  • Planning fundraising events

Evening:

  • Taking trial medication
  • Breath Stacking
  • Preparing dinner
  • Eating dinner with my husband and sister, in-laws, and friends

Night:

  • Taking medicine
  • Hygiene tasks
  • Changing into pajamas
  • Writing in bed while not a creature is stirring, not even a dachshund.

Every day is a roller coaster at a shoddy carnival. Every day I have to choose again and again to feel the joy of the summits rather than the stomach-clenching pain of the drops. I feel a sense of accomplishment on many fronts, so I push myself to bask in that satisfaction. I have maintained fewer old friendships than I had hoped, but I am glad to spend time with new friends. I’m fighting isolation, and I am proud.

Sometimes, though, the valleys of this poorly maintained ride are dark and lonely. The rails rattle in a disturbing way, but I am helpless to do anything about it. I may vomit trying to eat because my appetite is so poor. Depending how stiff I am, PT can be frustrating. I often get worn out well before dinner time, which causes the quality of my speech to degrade. I also need help with almost every single task, so I am never, ever alone. This lack of privacy is emotionally exhausting beyond what I, a true extrovert, thought possible.

Yet I am starting to learn how to manage the roller coaster, figuring out when to grasp the shoulder harness until my nails crack and when to let go, throw my hands in the air, and shout in joy. ALS is a wild, deadly ride, but not one that will break me – whether or not l survive – because I know to reach for the sun whenever I’m hurtled towards it.

The Waves

The Opera and Mosquitoes

This morning I tried to buy opera tickets as a surprise for Evan (he is a major fan), and all accessible seats were sold out. I know it’s not the end of the world, or even cause for tears. Operas are clearly a luxury. Still, incidents like this chip away at my loved ones’ assurances that I am not bringing them down. I remember the countless, tiny limitations hovering around me like a cloud of mosquitoes. I remember I can’t be the wife I was: the one who goes on romantic sunset canoe trips, holds hands with her husband while walking beside him, hikes with him in the afternoon, and goes stargazing in the park with him at night.

Up All Night

I keep replaying last night in my head. A few hours after going to bed, I started feeling some muscle cramping and spasms. I tried to adjust my position to find comfort, but I could not roll to my side. This is becoming more and more common as the weight of a blanket becomes enough to pin me down. In the past, I have whispered Evan’s name and, half-asleep, he reaches out his hand, clasps mine, and pulls me to relief. I promised myself not to need him last night, though, since he has been up with me each night this past week as I fight a cough. He was clearly worn out.

“I can live with this, I can breathe through this,” I chanted silently.

Evan never complains about the ways my disease wears him down or holds him back. Ever. He is my absolute all, my strength and reason for fighting. He is the steady, calm man I have loved and trusted all of my adult life. Even in his sleep, he looks kind. He deserves sound, peaceful rest at the very, very least. So I lived with the spasms and breathed through them… for an hour. I tried to let his peace and my will be enough, but, like a lung clenching for air after being held underwater, I. Had. To. Move.

I woke him up three more times last night. We will experiment with my medicine tonight to relax my muscles. He will take extra care with my evening stretches. I will bargain with my disease to leave him alone. I will try to forgive myself