September 11, 2001, can carry a different meaning for everyone. To some it means the loss of a beloved family member or friend. To others it means the loss of a sense of safety and security in the world.
Fast-forward 17 years later, for me 9/11 carried a new meaning and in a sense the same meaning I had about that horrific day-devastation, sorrow and loss.
On September 11, 2018 of this year, while sitting in the doctor’s office alone awaiting test results, I was officially diagnosed with ALS (Amyotrophic Lateral Sclerosis) or commonly known as Lou Gehrig’s Disease named after the famous New York Yankees baseball player who was diagnosed with it in the late 1930’s and eventually succumbed to the disease and passed away several years later.
Shocked, devastated, and the feeling of loss, I began to weep into a towel right next to me as my neurologist gave me the news. I knew what the diagnosis meant. My life would change forever and my body along with it.
It wasn’t at all what I had expected to say the least. You see, I use to be an elite world-class athlete and had been a competing athlete ever since I was 8yrs old. I had been quite healthy my entire life, never had to take any prescription drugs, only had the flu several times, no allergies, no immune deficiencies to speak of-nada, zippo. Perhaps the same story you would hear from Lou after his famous speech in Yankee Stadium when addressing the crowd of his retirement to the game he loved, and many others after him.
Amyotrophic lateral sclerosis (ALS) is a group of rare neurological diseases that mainly involve the nerve cells (neurons) responsible for controlling voluntary muscle movement. The disease is progressive, meaning the symptoms get worse over time.
In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, and stop sending messages to the muscles. Unable to function, the muscles gradually weaken, start to twitch (called fasciculations), and waste away (atrophy). Eventually, the brain loses its ability to initiate and control voluntary movements.
Currently, there is no cure for ALS and no effective treatment to halt, or reverse, the progression of the disease. Early symptoms of ALS usually include muscle weakness or stiffness. Gradually all muscles under voluntary control are affected, and individuals lose their strength and the ability to speak, eat, move, and even breathe.
Most people with ALS die from respiratory failure, usually within 3 to 5 years from when the symptoms first appear. However, about 10 percent of people with ALS survive for 10 or more years.
And so, here we are several months later as the holidays approach, 9/11 has a new meaning to me, HOPE. Hope of being able to live as long as I can and be one of those outliers, to enjoy the time I have left with family and friends, and maybe just maybe help to find a cure to this horrific disease.