Wednesday, December 16th, 2020 was the worst day of my 42 year long life. It was the day of my first appointment with my second neurologist. This one was not your average neurologist, my symptoms were more elusive than a migraine and more testing was needed to determine why I had started slurring back in April. Months of denial, pandemic parenting, procrastination and scans followed.
I drove alone. This was just going to be another appointment like so many before it. Me giving the history of my symptoms, noting that despite having high blood pressure and a few extra pounds — I was a runner and a long distance one at that. Next my list of medications giving away my secret battle with anxiety. Then the doctor would tell me all the tests that would need to be run and how long to wait for them to receive and interpret the results before coming back.
I could tell by his demeanor that he knew what I had and that it was weighing heavy on him. He left the exam room while I got dressed. My mind was racing and dreading the moment he would come back. I knew in my heart that he knew what this mystery ailment was and that it was going to devastate me.
Slowly the door opened and with a sigh, he sat down and said it is ALS.
Crushing fear, sadness, heartbreak - all flood in my thoughts. How did I drive home? I honestly have no idea. How did I push through to watch my son perform in his first band concert that very night? How did I manage to pull off Christmas for our family of six the very next week? It is still a blur.
January comes and new reality is setting in. Anxiety medication is ramped up. Prayers are abundant and family always close by to lend a hand. Friends are laughing at the horrible skits I like to do with my amplifier headset I now use so I can be heard. I share my diagnosis with my boss and team members. All are supportive beyond my hopes.
The spring months find me using a cough assist machine during the day and a ventilator at night. I qualified for a trial and then was disqualified before having the first dose. There were soul wrenching moments of complete despair yet a light always there to pull me out. Some thought, something, someone is always there.
I have lived with my diagnosis for the past six months. Only now do I know what that light is. It is my adoring husband and the children we share. It is my resolute faith in the most unfortunate of circumstances. It is having my family close by and friends as close as family. Too many in my situation do not have any of this and it hastens their progression.
So if you happen to care for someone with ALS, please prioritize their mental and spiritual health. If you are that person with ALS, there is help and there most certainly will always be hope.
