I am Alana Doran
a family member of someone we've lost to ALS
New York
So don't do this alone, reach out, tell people what you need.
In 1997 I lost my father to ALS after a 4 year long battle. I was 8 years old. My life has been a struggle, but I am so grateful to be alive. I live for my dad, Alan – who I am named after. My experience with this disease has given me a perspective it seems many people around me cannot comprehend. I wish this experience on no one and yet I am so filled with joy at the idea of being alive!
Don’t get me wrong, I wish I had my father. I wish I knew what my life would be now with him in it. I’d love for him to meet my daughter. I guess going through this, watching someone die as you are just beginning in life gives you a dark perspective, it can make it hard to think or even plan for a future.
Becoming a mother changed me in many ways, my perspective on my grief turned into the perspective of my parents. It must have been painful for my father to know what he would miss. How did my mother function, let alone raise 3 children by herself? I ponder these questions often. What I want any family member or spouse of a person with ALS to know is you MUST live your life. You will not be honoring them by holding back, you cannot look at life as if it is something you shouldn’t live with shame just because they cannot live theirs. We deserve life and love, no one is alone!
So don’t do this alone, reach out, tell people what you need. You will find that many many people want to help but don’t know what to do. Tell them! And know that dark humor makes the pain wash down a little easier it’s has always worked for me 😉
