I’ve had an epiphany!
First, let me backtrack just a little. When I started writing my little “ALS Fact of the Day” posts on Facebook, they were meant to be informative in a fun little way. I tried diligently to keep them light and carefree. The beginning days of learning to live with ALS, and caring for someone with this disease, I thought I could help others learn about what ALS was, how it was affecting us, yet I could do it in a way that made people smile. I thought I could do this with strength and resilience…I thought I would be different than so many others who had been on this journey before me. Soon, the posts would lose their humor, as I would come to learn the realities of ALS myself. Now I know how truly naive I was in thinking I could go through this, by his side, and not have a mirade of emotions overpower me on a daily basis.
It went from mild loss of strength in Matthew’s hands, to eventually much more. So slowly, that sometimes the losses were indiscernible, and wondering why his progression was so much slower than those around him. But the clock has continued to tick, and his progression is still slowly moving ahead.
I would stop writing those humorous posts. I would find that writing about my pain and loss were more the focal point. The agony was more profound, and I was at a loss of finding the positives in each day. And to be quite honest, I was also feeling sorry for myself. I could almost hear what other’s were thinking, as if they were saying it to my face, instead of my imagination yelling it in my mind.
“Why are you so depressed, YOU aren’t the one dying from ALS?”
Then, I would begin getting comments from people, sometimes privately and sometimes not so much. They would ask why I felt the need to write.
Because if I don’t I will drown in the overwhelming emotions of trying to watch someone I care about, die…slowly.
Others would feel the need to try to protect Matthew, telling me I was taking advantage of his situation, and that this shouldn’t be such a public display. No one needed to read what I was writing. Others even told me that it was too painful to read, and they wished I would stop writing.
So, I quit writing.
I thought I could find different ways to express myself.
Maybe I would write a book? Yet, when I sat down, the words wouldn’t come.
Maybe I could start a blog? And when I went to write in it, I froze.
The words wouldn’t flow past my fingertips..
Then, last night, as I sat on the porch, drinking my third glass of wine, talking with Matthew. I had an epiphany!
I quit writing because I was hurting others. I quit writing because I was afraid that the things I had to say would hurt family members or friends. I quit writing because I was afraid…
So, this morning, I decided I would face that fear head on.
This journey is painful, and difficult. Yet, this journey is ours. This is our story. This is not just Matthew living and dying from ALS. We are living this together. And it is beautiful, it is heart-wrenching…and it is ours to tell.
For those who want to learn about the story, or be a part of it, you are welcome. For those who have judgement or anger that it is being told, and quite possibly not in the way you want it to be told, go tell one yourself. But your judgments and anger are no longer my problem. I will no longer feel responsible for those who feel it is too painful for them to read.
This is our story, and I will tell it.