ALS: A Humbling Disease

Help. It is the essence of the disease. Help me put my socks on. Help feed me. Help me shower. Help me get out of the house. Help me breath, help me, help me, help me, help me live. It is humbling beyond measure to be the person with ALS who must ask for all of this help.  Helping has become the master of our universe. Tom needs the help, and I give it.

My man was always strong, and muscular. There wasn’t anything he couldn’t do physically. Change a tire? No problem. Move furniture? No problem. Carry all the groceries with one hand? No problem. Can’t open a jar? No problem.

Now, all of those things must be done by someone else. All of them, every single one, plus more. To the man who did it all it is humbling to ask for help. It is humbling to hear this man ask for help to cut the meat on his plate at dinner. I try to anticipate needs and wants, to avoid the asking all of the time. I am not a mind reader so it is not a perfect system.

Asking for help, for us, from others is a challenge. I don’t like it. I want to do everything for us that needs to get done. Every last detail, I want to be the one to take care of it but yet I cannot. It is impossible. It is a disease of epic proportions sucking us both in as each day passes. I am rethinking my position on what it is I am capable of doing, day in and day out, all by myself. This attitude it isn’t healthy. It is a work in progress to change it.

I like life best when I am the helper. I was born one. It is in my blood and has driven my education and career choices. I want nothing in return but to know I have made someone else’s life a bit easier with what I could for them. To be the one asking for it does not go down easily. I know there are others like me, born helpers, so it’s time I turn the table on myself. I am learning to be on the receiving end of assistance bit by bit.

I have had to ask for help more than I ever wanted to. Not once or twice but multiple times. Recently I asked for assistance for something I probably could have continued to work on by myself for Tom. I had been at it on and off for months with the Veterans Administration. I gave up and asked for help. I am not good at the asking part. I almost do not know how to do it but I hit an emotional brick wall and gave up the struggle the other day. It was humbling for me. It is a tiny eye opener to how someone with ALS must feel, at times, always needing help to continue with their life.

Learning to seek help more, not less, to eat the humble pie,  will improve my energy and patience. It will make me a better caregiver and that can only be good for Tom.