ALS: The Death of Hope

Paul and Paulette

If I could pull back life’s curtain-

I am certain;

I would have been there for you more often.

I would have been more attentive and not so proud.

I would have been a better friend, a better namesake.

For sisters and brothers are like celestial stars;

sometimes bright sometimes dim;

but always there.

Though I can say with certainty

my familia love for you

has never waivered,

 I feel such sadness and despair for not being there.

ALS and busy lives made that happen, didn’t it?

I am so sorry my courageous brother.

Forgive me.

                                                       ♥p.o.martig

Why, Why, Why?

Amyotrophic lateral sclerosis (ALS)  is a rare progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control.(¹)  My brother Paul was diagnosed with ALS in January of 2019, without knowing why, when or how it started?  ALS is a medical enigma.  There is no hope, no cure, no rainbow at days end; just pain, misery and pre-ordained death.

While I have researched the question of why ALS extensively, I’ve come to believe in a simplistic premise: ALS festers in slow motion when one or more life-threatening events occur. When Paul was in high school he played football and injured his back.  When Paul was a firefighter in his early twenties, he fell through a roof and injured his back once again.  These two specific traumas, I believe, were the seeds planted for ALS to slowly manifest itself in his spinal cord.  Over the years, Paul has endured back surgeries, rehab, canes, and blood clots of the leg and lung culminating last year with an unsustainable weakness of his limbs and an ALS diagnosis at age 69.  Disease doesn’t just happen with the turn of a switch; it evolves, it multiplies, it destroys.

Approximately 2 out of 100,000 population are diagnosed with this rare disease.(²)  There are no cures or miraculous scientific studies promising a cure at this time, nothing but a slow agonizing death for its victims who have approximately 2 to 5 years to live depending on the study.

Noone should ever have to endure the pain or humiliation of a body slowly and methodically killing itself.  When breathing, movement, speech, swallowing and eating start to fail, atrophy takes over.  Gradually most people with ALS die from respiratory failure, which is the case with my brother.  He is now on a ventilator and cannot breath more than a few minutes without its assistance. As of February 2020, my brother has about 8 weeks left on this earth.

The symptoms of ALS may begin with stiff muscles, twitching, general weakness in arms and legs or difficulty in swallowing or speaking.  Erratic behavior may occur within the whirlwind of these symptoms.  Only 5-10% are believed to inherit the disease and approximately 90% of the cases have no known cause depending on the study.  ALS usually affects those from 40 to late 60’s and around 50 if inherited. (¹)

The only solace available to ALS patients is through life sustaining respiratory treatment, rehab, feeding tubes, state of the art wheelchairs and an abundance of family love and support. (³) This my brother has in abundance along with his unwavering faith in God and a better world after death.

Please see the tale of my brothers fight with ALS at Paul Dannels/ Caring Bridge, a site for grieving people writing through the prism of love and fellowship.*

“Of all the ways to lose a person, death is the kindest.” -Ralph Waldo Emerson

*As of 8 pm 3/14/20, my brave and courageous brother passed away and is now in the arms of his beloved.

Just prior to losing his ability to communicate through his keyboard, Paul, prophetically wrote, “You know I have given my life to God and if feels really good.”  What an amazing human being just left our world. 

References

(1) http://www.alsa.org/about-als/facts-you-should-know.html

(²)http://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/symptoms-causes/syc-20354022

(³)http://en.wikipedia.org/wiki/Atrophy