Grounded by Fearlessness
It was a hot summer day with a bit of a Chicago breeze. I sat in my car and watched the trees dance in the wind. I felt hot with envy. I was envious of the trees' freedom of movement, their grace and their beauty. It felt like an eternity since I had seen those qualities in myself.
My two-year-old daughter absolutely loves books, and it is one of my favorite things about her. Earlier that day, she ran to me with excited sparkles in her eyes. Her one dimple pierced her cheek. She yelled, “Mama! Can we go to the library so I can show you the new Peppa Pig books?” After a resounding, “Of course!”, we decided to make a family date of it and go to the library and our favorite pizza spot for dinner afterwards. However, like in most situations, ALS had other plans. Sleep deprivation had made my limbs feel extra noodle-like that day. While trying to get in the car, my legs refused to cooperate, leading to a near fall and tears that burned my eyes until I couldn't open them (a mysterious symptom I like to call "ALS acid tears").
So there I was, parked outside the library while my husband got to see the toys and the Peppa books with my daughter. There I was, barely able to lift my arm high enough to scratch an itch on my face while I watched people come in and out of the library with their smiles and their strong legs and their unchanged plans. There I sat, looking at the trees mock my immobility.
Envy and fear were so foreign to me prior to ALS. I've never been a "misery loves company" type of person. Regardless of the struggles that I've endured, I've rejoiced in the successes and happiness of others. As for fear, I've always found it to be absolutely useless. I was the kid that moved across the world as soon as she graduated high school. I was quick to volunteer to jump first when I went skydiving. I just never wanted fear to keep me from experiencing new things or making difficult choices that would be best for me. I would not let fear tie me down.
With ALS, suddenly fear was everywhere. It was in every wobbly step, every transfer, every twitch that might indicate worsening, every venture into an unfamiliar space. I found my mind paralyzed by fear even though ALS had yet to paralyze my body. Most of all, fear has lived in the wonderings. What will the disease look like moving forward? What will my loss do to my family? What if I die soon? What if I have to live years and years with this disease? I fear confinement. I fear isolation. I fear hopelessness. I fear this will make me someone I'm not...perhaps someone who curses dancing trees or cowers in the shadows.
In the rearview mirror, I could see my daughter returning to the car. Her bag of books dragged across the pavement as my husband hunted his pockets for the car keys. I looked at the trees one more time and apologized for projecting my fury. I looked back in the mirror and decided we were making it to dinner one way or another. Although rocky, we got me in my wheelchair and into the pizza restaurant. My daughter chatted away, her nose sweaty with excitement, while my husband cut up both of our meals. It felt like a win.
Two weeks later, another unsteady transfer resulted in a fall that lacerated my head, fractured my ankle, sprained my other ankle, and ultimately took away what remained of my ability to walk. Like a tree in the woods, I fell and the sound was a dark and ominous boom that shook everything around me. The month that followed was overwhelming as I was suddenly thrown into a wheelchair-bound life. I could no longer get in my car and was stuck at home while going through the complicated process of purchasing a mobility van. The isolation I had feared was suffocating. I hated the trees and birds and cars outside my window. I missed more library trips, days at the pool, afternoons at the park and family dinners. I was mad as hell.
As I tried to come to terms with my new reality, I was simultaneously preparing for my first Her ALS Story Warrior Weekend in Cape Cod. These women had gotten me through the last year with solidarity, laughs, resources, empathy, motivation and support. I wondered, will envy rear its nasty head when I meet others who have retained more function than me? Will fear poke at my chest when I meet women who have lost their voice or are fully paralyzed? I didn't want to pack my fear and envy with me. At heart, I'm someone who will always find value and beauty in people. I am filled with gratitude. I believe firmly in seeking lessons and growth all around me. I hoped that my heart would shine through.
The retreat was more healing than I could have imagined. In these spaces filled with other ALS warriors, I felt profoundly seen. I laughed, I sang, I danced, I tipped drag queens, I meditated, I waded in the ocean, I cried and I lived. I had conversations with women that used their voice, text to speech, eyegaze technology, or just their smiles. Each interaction was a gift and a lesson. Best of all, I was not envious or fearful. I was me and they were gloriously themselves.
I miss many things about my pre-ALS life but I think if my old self could see me now she may be envious of the sisterhood and community that has wrapped its love around me. She would crave the beautiful journey that I get to travel with my daughter. She may even recognize the relief that comes from having to live for the present.
As I look out my window now, I see a tree shedding its golden leaves. We have both changed a lot since that day in June. As the tree loses its leaves, I continue to release expectations of what should have been. I embrace the safety of my wheelchair and fearlessly accept the challenges and gifts of the new season.
