I was talking to a friend tonight. ALS sucks. It’s hard. It’s tiring. Watching someone battle ALS is heartbreaking. There are no words to explain what it’s like. There is truly no way to understand it unless you’re in it, daily. My wish is that no one else would have to experience it. There are no books to read, there are no guidelines. There are no right answers. It is all trial and error. Mistakes are made. Adaptions are learned.
So much is lost, but so much is gained. There is unconditional love. I didn’t know what love was until ALS. I didn’t know what forgiveness was. I didn’t know what patience was. I didn’t know how to live in the silence, how to sit in the quiet. I didn’t know what peace was.
Sometimes there are no words. Sometimes talking is too much. Remember that when friends are going through hard situations. Sometimes just sitting with them (even on the phone) in silence does amazing things.
I sometimes sit in anger and curse the disease, the situation, that fact that there is still, in 149 years, no cure. I cry over my loss and the years it took away from Duane. I cry wondering if I could have been better, done more. I second guess the path we took, the decisions we made. I wonder if we would have tried something else, participated in a trial, had more medical intervention… What would life have been like?
I have no regrets. At the end of the day we did what Duane wanted. Up until the end he lived the way he wanted to live. He wishes were met. In the end there was love.
– xoxo Victoria