Sunday, March 26, 2017


I have been dreading this upcoming week.  Wednesday is my six month diagnosiversary. I have been living with the knowledge that I have ALS for six months. Six months. Six. Months. If I am typical of other PALS my age, that is 1/4 of the two years I am supposed to have left. Or 1/6 of the three years; 1/8 of four years; 1/10 of five years. That is where it typically ends.
I have moments where six months seems like an enormous amount of time - this endless period of grieving which alters and changes with the loss of each little muscle. Every time I get a cramp in a place I didn't before I imagine it is my muscle dying. Sometimes the cramp is deep and very painful, almost like I can hear it fighting to survive. Other times the cramp is small and weak, like the last little breath that the muscle had.
Six months of experiencing changes in my body and abilities that I never thought could happen. Walking, limping, walker, wheelchair, power wheelchair.
Standing, leaning, holding on. needing another.
Writing/coloring, different hold, messy hold and handwriting, no hold, others writing for me.
The list goes on...
I alter deadlines in my head and out loud. And as much as I try to keep our lives as normal as possible, I see and hear my kids changing their plans and goals based on this concept of limited time.
I wonder if we would be better if the end would come faster rather than drag on and on and on.

There are other moments where six months is fleeting as I spend time laughing and loving my beautiful children. That went too fast I think. Slow down. I want it to creep along so I can savor the sweetness of it all. Gillian coming home at the end of the day, plopping herself down in the love seat next to my chair. Sometimes chatting away about her day, sometimes both of us sitting quietly while she catches her breath. Ean revealing more about who he is every day through humor and opinion and artistic creations. Sarah sending snippets of her busy life at school through texts and pictures and political commentary that shows maturity and happiness. All of this goes so fast and I want THIS to slow down so the memories become more ingrained. I want to see lots of Springs come and go, not a limited amount. I want to see forsythia bloom and crocuses peek up and the robin come back to the nest on our light fixture a million more times, not just two, three, four, or five.

I don't write this for a response. I know many will think and say (as I do often myself) that I can live as a PALS for much longer than the anticipated two to five years. That I might get on a drug trial. That the cure is coming closer every day. Have hope. Feel hopeful. Don't let the negative thoughts take over. Stay positive. And I do. And I will. And just because this blog post feels especially dark and "woe is me", this is not the whole of who I am at this moment. Just one facet of a myriad of confusing and multi-dimensional feelings. This is a snippet of what it feels like to me to have my six month diagnosiversary looming in front of me.

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