Actually, nothing could be farther from the truth. ALS is a terminal disease
that currently has no cure and treatments only extend life for a brief time at
best. The average life span, after diagnosis, is three to five years. Much of
that time is spent in a gradual decline to complete muscular paralysis. Now, a
little bit about my background before I explain why I haven’t given up on life.
I graduated with my Doctorate in Chiropractic medicine in 1989. I have intricate
knowledge of the human musculoskeletal system and the pathologies (illnesses)
that can afflict it. After a few years I decided that I did not enjoy the field
at all and left it to help run my fathers construction business. A choice that I
have no regrets making. Beginning in the summer of 2011, I noticed some fatigue
in my right hand while I would write. By the end of December, the fatigue had
become weakness and had travelled to my upper arm and shoulder. As a Doctor, I
figured that I had damaged some discs in my neck which were compressing the
nerves that control the affected muscles. In February 2012, an MRI study
confirmed that I had bulging discs that were affecting the discs on both sides
of my neck. On April 17th, I had a consultation with a neurosurgeon. He examined
me and we discussed my surgical options. He noted that his findings indicated
that I should be experiencing weakness in both of my arms and that I should be
experiencing some pain. To that point I had no complaints of pain anywhere. He
stated that he would perform surgery after I was evaluated by a neurologist
(made sense) and had seen an ENT specialist (this was unexpected) to evaluate my
vocal chords. From that moment bells and whistles were going off in my head.
By noon on April 18, my 48th birthday, I figured out what was wrong with me. The
clues: all of the above symptoms plus 1) I had been having intermittent
unexplained muscle cramping in different places all over my body for about two
years. 2) The occasional muscle twitching in my arms for the past year or so.
And 3) For the last eighteen months I was having shortness of breath while
running no matter how much I trained ( I ran my first and only 5K in 2010). My
conclusion was that I had textbook ALS!
At this point I did not tell my family what I had figured out. It was a
surreal but also a peaceful feeling. I decided not to come right out with my
conclusion to my family, in order to figure out what I should do first. Then it
occurred to me, I only had one of two options. I could begin dying or start
living. I have chosen the latter. I just had to give up hope of a long life to
do it. I have read several ALS blogs (all of whom have since passed away). It
became very clear to me that those who accepted ALS as a part of their lives and
understood their fate early on began to “live in the moment.” They seamed to
live much fuller, happy and serene lives. Contrasted with the souls who chose to
fight ALS in hope that they would find the “cure” that has eluded researchers
since the 1840′s (when Dr. Charcot first documented the disease). They were
living for the future so worried about tomorrow and not experiencing today.
They exhibited much more anger, bitterness and denial. The choice for me was an
easy one. I realized that this disease offers no hope of a cure in my lifetime
(there is exciting research going on now but none that will “save” me). So I
chose to give up HOPE of a cure in order not to DENY myself the perspective of
happiness and beauty that every day affords me (read the poem I wrote in the
picture of the sunset). I can say one thing with the most conviction I have ever
had. If I was offered a cure with full reversal tomorrow and all I had to do was
give up my outlook on life that being diagnosed with ALS has forced me to
discover. I wouldn’t trade!