As my mom, Dad 2, and I navigate through this horror, I am amazed at how many people have a loved one who has had ALS. I find it interesting that only somewhere between 2 and 5.5 people of every 100 thousand have ALS, but so, so many people have been touched by it. I think of that 0.5 on the 5.5 and know that this person is in the last stages, because this is how ALS works. ALS robs you of your physical half of your body leaving your mind intact to suffer through what is happening with complete cognition. There is no dignity in this disease.
I have never written about this, because I have so many feelings of anger and heartbreak.
I don’t know how I will continue on when my mother has gone, even though she is not scared about going.
I think to myself how unbearable and demoralizing it must be to have no dignity left, to be at the mercy of others and to lose all sense of being a part of the world, but still be here.
I think about sitting with her, laughing and reading and teasing each-other. About how she is still in there, in her body and how I can still hug her through her wheelchair cage and love her so hard so it’s the best it can possibly be for her RIGHT NOW.
Yes, my mom has ALS.
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