September 26, 2022 at 7:09 am #22768AmandaKeymaster
Anticipatory Grief, for me, has always been more difficult than conventional grief. The waiting, the worrying, and feeling helpless and without any control is unthinkable, yet part of everyday life for a pALS and caregivers.
Perhaps many people share this perspective. You can grieve the loss of a loved one, the loss of your abilities, the loss of resources and you can even grieve what you have never had. Grief is tricky, confusing, and nonlinear.
Are you a pALS, caregiver, or friend of the community? What are your thoughts on grief? How do you take care of your mental health knowing that loss is inevitable? What advice or information can you share with others?
September 28, 2022 at 8:08 am #22785Len JaxParticipant
Below is an excerpt from the memoir I have been writing since my journey began. I feel control of anticipatory or regular grief is an illusion. Grief is often a friend of mine, and I am grateful I have it in my life. It allows me to feel relief from the chaos, grow, and move on to a greater understanding of the world as it is! I have learned to let it flow through me and not settle within me. It tends to linger, grow, and consume your life if allowed to take root. Sadness, for me, is the first step in grief. Ironically, grief enables one to experience the joy of life you have left more fully.
My mantra in dealing with the losses of PLS/ALS has always been to grieve the loss, accept the loss, adapt, and move on (GAAMO). I constantly adapt and move on to something I can do. It has worked well for me. Sometimes it works, sometimes it does not, but one always must try. Slowly, I am coming to face that my options for adapting are shrinking by the dawn of each new day.
“My options are plenty
But my choices are few
I don’t know how to say goodbye to you” (Ben Harper)
Music has always been my Therapy, and I listen to it every night. I call my genre “Depressingly/Optimistic. In the link below, Freya Ridings sings “Lost Without You” in the song for today. Sometimes I listen to this song in heartbreak and isolation, as Freya says. I am standing on the platform, watching my life go because I think I’m lost without my life as it was. But now I’m standing on the platform, happy to watch Tim, Jess, Henry, and Ellie go on. (My son, his wife, and the grands) Their beginning is my end. The circle of life is lovely, and the reality is that life is as it “Should be.” Life is good.
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