I had very little knowledge of ALS before Mary was diagnosed.
I did know it was 100% fatal but I had no idea how much damage it could do before killing you.
Now that I know more than anyone should, every time I see or hear of someone being diagnosed, it breaks my heart. When it is someone I already know and count as a friend, it is even more heartbreaking.
My broken heart shatters each time I hear that a friend has died. In the last 10 days, two people in my circle, my ALS community, have died. Despite living with an ALS diagnosis for 4 and 10 years, both took sudden turns that claimed them quickly. They have left behind people who were my rocks while Mary was sick, while she was in the hospital, when she died and since that day.
Each loss tears the scab off of my own ALS battle wounds. Each loss brings me back to Mary’s journey, her final days, her last day, and the intense depth of grief that knocked me flat. And I know what my friends are feeling: the shock, the anger, the disbelief, the surreal and intense roller coaster of loss and grief.
Knowing the diagnosis does not make it any easier. Knowing that this round of pneumonia, this urinary tract infection could kill them does not make it easier. Platitudes do not help. “They’re in a better place now” doesn’t help. “They aren’t suffering anymore” doesn’t help. All you know is that the ALS bullet train has just derailed, that life as you have known it over the last 6 months, year, five years, ten years, has changed in a second. Who you are has changed in a moment. Your life will never be the same, the scars will always be there, the loss will always sting.
Someday, there will be an effective treatment. Someday, there will be a cure. Someday is not soon enough. Someday is too late for too many people.
So today, my heart is shattered again, and I reach down to gingerly pick up the pieces and try to put my Heart, my Self, back together again, knowing that once again it is different than it was a moment ago.