After ALS…a wish

(I’m just sharing, what’s in my head)

At this point in time, in the history of ALS, there is no cure. There are 2 meds, countless potential treatments in development and an army of advocates tirelessly working to end it. So as persons living with ALS we engage, support and wait. We wait, wait for treatments, wait and watch others become free of ALS, as we await the same cure.

After I am cured I would like a few things to happen…

Celebrate my life with me, in spirit; my life without ALS, preferably with an open bar. Keep fighting to create a world without ALS for others. Take care of yourself, take a break, take a trip but most importantly take the time to meet yourself again. Open your heart to new possibilities, new people. Remember me but don’t obsess, I know it will be difficult, wink.

Live, live, live… you have earned it in spades as a caregiver.

My wish for you.

My wish for all affected by the three dreadful letters, ALS.


One comment

  1. Joanna · February 8, 2022

    I await a time when we consider life to be the cure, rather than death. When we can “see” the connections between ALL life, rather than compartmentalizing pALS as a separate thing.

    I practice peace even as I await peace. And I live even as I wait to die. I LOVE you for saying the words you use to encourage the generation of hopeful caregivers and patients…You say LIVE! I second that, for all we ever have is today. Tired, frustrated, overwhelmed, hopeless even–feel it all. Thanks so much for sharing your experience, strength and hope with us.


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