From the day of diagnosis to May 1, 2018, this is how many days Amyotrophic Lateral Sclerosis, ALS, has been in our life. It is a lot of days. It is a long time. It feels like yesterday. It feels like time is on speed.
The journey to a definitive diagnosis was a long time in coming. It took years. It was fear filled. It was words we did not want to hear.
Fasiculations, muscle weakness and atrophy were, and are, daily reminders that this is a disease of epic proportions. Tom’s progression is slower than most accounting for the difficulty in diagnosing it. It was not a surprise that it was ALS. It took our breath away. It made me think of all of the days we had together. It made me scared of our future.
My dad used to say Tom and I were tied to the hip. It’s an old-fashioned kind of saying. It’s a true statement. It’s a poignant reminder of our mad love for each other.
We saw a number of specialists in search of a diagnosis. We traveled up and down the east coast, over a few years, seeking an answer to his ills. It was a mission. It was important to us to know what was wrong. It is a time I miss, a time of not knowing. It is ignorance is bliss.
After going through the tests, and the tests, and the tests, we saw one last neurologist. He kindly sat in front of Tom, making eye contact with just him, as if I was not in the room, and said he was sure Tom had ALS. That was it. The diagnosis became real and life changed. It was our new reality. It was all at once a relief to know and heartbreaking to hear.
We left the office hand in hand and went home. We didn’t cry, not then anyway. It would be a lie to say I didn’t cry later or don’t cry from time to time. It is a hard disease. It is a lot of days to live with it. It is a lot of days of waiting for the next part of his body to not work. It is a fact that crying is a useful release of pent up sadness.
Every day is not a sad day. Most days are good ones. Our love grows deeper, as it always has, when life has thrown us curve balls. This was the curvest ball we have had to field, ever. It is a beast. It will not destroy the tenderness we have for one another. It is fatal but it cannot kill our heart. It isn’t allowed.
May 1, 2018