ALS Awareness Month: 1

May is ALS Awareness Month. As I have done for the last 7 years, since my diagnosis, I will share daily. I will do it my way, which is to weave facts into what it’s like living with ALS.


Would you remember the details of the moment you were told…

“you are going to die, and there is nothing that can be done to prevent it.”

This moment is seared in the minds of nearly six thousand persons every year, when diagnosed with ALS. Ask, and they can describe the exam room, or the location in their home, if God forbid they received it over the phone. The initial shock followed by undiscernible information relayed by the doctor. Your ears hearing, but your mind not processing it. Your thoughts a blur, your heart racing, and your soul shattered.

Some experience relief at finally knowing what is causing their body to fail. Others, many, don’t emerge from the mental prison that is ALS.

But I’ve never heard of ALS, what’s going to happen, how long do I have? Google or Siri – What is ALS?

“ALS is a progressive Neurodegenerative disease causing death of motor neurons. Patients experience loss of voluntary muscle function, often succumbing to respiratory failure. Currently there is no cure and it is fatal.”

You have ALS. Three words that anchor you to the very moment they are uttered. A foreshadowing of sorts. Foreshadowing of the eventual locked-in syndrome every person with ALS will experience. Trapped in a body that feels, that senses, that is present, alive but not living. A body shattered by…ALS.


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