May 2019 started off so well. Along with a dear friend, I’d been part of my first literary panel, the weather was incredible, and it was time to start planting the garden.
Then May 7th arrived.
As I have written before, my life was divided into two clear parts as of October 9, 2013. The first part of my life was everything up to that date, then Sam died. And I thought that date would be the big dividing line.
Then May 7th, 2019 arrived.
We went to an appointment in Burlington, knowing that something was wrong with my beloved husband, but we had no idea of how serious it was. On that day, the doctor coldly announced that he had ALS. Then he said that the average life expectancy is 6 months to a couple of years. The words were cold. The delivery was cold. It was pure and simple a message of “go home, get your affairs in order, and there is nothing that can be done.”
Now, I realize now, as I did then, that there was nothing that can be done to change the diagnosis. Nothing to change the outcome. There is no cure. But the delivery? It was cold, impersonal, and cruel. There is a huge difference between giving a realistic view, and being cold and cruel… No one should be given such a diagnosis in such a manner.
How did we react to that news? In shock, we got in the car and started to drive home. We had to pull off in a parking lot so we could fall apart. Over that next few days we did that a lot. We cried. We yelled. We swore. We figured out how to tell our parents and children. We got our “stuff” in order. We had those god-awful conversations that no one ever wants to have.
Then we found ourselves again. We decided knowingly and openly that we would live every moment to the fullest. We would not keep asking “why us,” and instead enjoy how fortunate we are. We have love surrounding us. We have incredible friends and family. We live in a place we love. We would do things we’d always wanted to do, and we would not take a single moment for granted. We did our research, we sought out both traditional and non-traditional treatments, and we have re-found (is that a word?) our gratitude.
It’s almost a year later. On the night of May 7th, 2019, I felt that my heart had been broken a second time. On this May 7th, I will instead celebrate how incredibly fortunate we are, and give thanks for every moment we have had in this last year.