On June 10, 2015, I shared this message with my loved ones…
“Dear family and friends: I am so sorry to have to tell to you that today I was diagnosed with ALS. I am sad and scared, but also hopeful that I will live longer than the average ALS patient because mine is a disease mostly of the upper rather than lower motor neurons. This may mean my lungs will stay functional longer than the average 5 years. No matter how many years I have left, though, I know they will be beautiful because I am so well-loved by my husband Evan and all of you. Please keep me in your wishes, prayers, loving thoughts and light, and know that I am grateful to know you.”
Then my husband and I were swept away into the dizzying rapids of ALS care…
“Every three months, I will be attending a multidisciplinary ALS clinic so the progress of my disease can be assessed and I can learn new skills to keep me living comfortably. After a six hour first clinic visit in which I met with my doctor, social worker, occupational therapist, and physical therapist, I am happy to say my breathing and muscle tone are strong and my speech is in a range indicative of slower decline. At my next clinic in September, all of this will be assessed again. We are hoping for a very small amount of change, as this would mean I have slow (rather than average) progression.”
Those first months all came down to the question, “How long do I have?” That was no way to live…
“I’m fine,” I insisted, trying to be pleasant even though I was beyond overwhelmed.
Deb shook her head. “Don’t settle. If you are having trouble buttoning jeans or using a fork, tell me. We will figure it out and keep you independent as long as possible.”
Deb, my Occupational Therapist, was the 6th specialist I saw at Clinic the day everything changed. I was exhausted by endless assessments and frightened as I tried to make sense of all the information coming my way. Deb is not one for excuses, though, and I needed her pushing as badly as I needed the follow-up appointments with her where we plowed through a list of tasks that frustrated me and devised alternate ways to complete them. Deb changed my whole perspective on Clinic.
It is, as my neurologist Dr. Goslin says, a place to rewrite the story, even if we can’t change the ending.
We still check my progression, but this disease and the treatment for it no longer simply happen to me. What I want matters. My goals matter. Deb taught me never to miss a chance to address my concerns and needs so that I can live as well and as long as possible. These hours in clinic, these people who support and hear me, keep me doing what I love. I believe that they may even save my life, keeping me strong until a medication comes out to stop this nightmare.
I have hope, and it is stronger than fear.
Endless gratitude and love to my husband Evan, who held me when I was diagnosed with a terminal illness, rocked me when I cried myself to sleep for months after, and holds my hand at every single clinic. You are the reason I fight