Marianne Has ALS

Today was hard.

Physically I’ve come to terms with where I am, however, I’m not prepared for the loss that is to come: unable to hold my husband’s hand, hug my son, pet the dogs, and unable to communicate with my own voice.

I don’t know how to grow or maintain hope in the face of certain debilitating death. Seriously, I’m open to suggestions.

On good days I tell myself there is a chance for a cure, maybe I’ll become one of the very rare reversals, or, at the very least I’ll be one of 10% who make it ten years. And then I google – one should never google a terminal illness. It’s not like I don’t know how the story ends, but I desperately want to compare myself to others who have / had ALS. I want to see the story of the 42 year old woman who lived 20 years. I want to see myself in her story. The internet is not full of these kinds of stories, quite the contrary – you are more likely to read about the 38 year old who died in 2 years or the 75 year old who declined and died within months.

I’ve been told more than once that I need to keep a positive attitude, focus on the good, don’t give up on the future. There is nothing good or positive about ALS and the future is (currently) certain death.

I am fortunate to be surrounded by love, I am thankful for all that God has placed in my life, and though I struggle with hope I know I am blessed. There is still nothing good about ALS.

I’ve had to adjust to living in the moment (I’m the kind of person who loves planners / filling out the year in advance…so this transition has been hard). And maybe that’s the kind of hope I should work on – daily doses, hope that this day or the next is filled with love and laughter. I’m still figuring it out….again, I’m totally open to suggestions.