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Courage In The Face of Death

Every morning I wake to face Death; with its decaying breath and sunken eyes and gaunt face. This occurs when I am wheeled in front of the mirror. It is not the reflection I describe, but what I envision. Because I am not the same person I was before ALS.

Often we are referred to, those of us living with ALS, as courageous. I will admit that courage is required to face a terminal diagnosis. That is a moment in time, a courageous moment. When, in that moment, you have the courage to face your future.

Beyond this, it doesn’t take courage to endure ALS, it takes patience, grace and love. All of these combined create the strength within, to live one more day for ourselves, and our loved ones.

Patience is critical for ourselves and others. Why? Because our body will demand it.

Grace because our mind and spirit will require it. This, due to the relentlessly barrage on our senses, and self identity. Which is degraded with every physical loss, inextricably attached to our independence.

Lastly, love. Not just the love we have for others, but the love we have for life. The love of art, a favorite book, or a silly inexpensive, but precious tchotchke.

These mundane things that have a special place in our hearts and minds are reminders of our life.

When least expected, something mundane reminds us why we love our life. This is that moment when someone mistakes our silly smirk for courage, or defiance. Little do they know we were just thinking of our favorite Pez dispenser from our childhood.


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Aug 22, 2023

This is so honest and real!!


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