Diagnosis

• David's Story

Please allow me to take you back ten years, to the day I was diagnosed. I was seated on the examination table, with several interns surrounding me, when the doctor began to speak. I heard Amyotrophic lateral sclerosis, he said you might know it as ALS, or Lou Gehrig's disease. I was familiar with the disease, because just prior to this appointment, I was discussing my symptoms with a colleague at work. He was telling me, his friend had the same symptoms, and it was ALS. I was very interested to speak to his friend, so I asked if I could contact him. The reply still haunts me, I wish you could, but he is dead. With my head slumped, not able to look at the doctor, I asked, how long? Without hesitation, he said, three to five years.

That was the beginning of a journey, of many changes, and challenges. This disease is a thief, stealing your ability to walk, to hold your loved ones, to speak, and finally, the ability to take a life giving breath. Each one of these losses presents enough of a challenge, for one to overcome. ALS ravages much more than the body, it tries to destroy families, marriages, friendships, dreams, one's sanity, finances, and even the will to live.

It was a gorgeous spring afternoon, an afternoon that on many occasions I would be on the river with the cool breeze off of the water blowing on my face, feeling the current massage my legs, and readying my fly rod to cast to a rising trout. But this afternoon I left the doctor's office with what I thought was a death sentence. My head was spinning as I drove the few miles home. Selfishly, I looked out from my car at others around me, and thought how fortunate they were to go about their carefree lives. I felt as if the world should stop and take notice of my plight, but it did not and went on without me. Why didn't everyone take notice, this angered me. I was certain my life was over.

Several days passed as I wallowed in self-pity. During those darkest of days, a reoccurring thought kept playing in my mind, why didn't the world stop and pay homage to me? After many prayers, asking God to show me the way, I realized the entire world had it's own burdens. I was no different than the people I saw from my car driving home that day. They all had difficulties in their lives, some small and some much greater than mine. The difference was I had not faced my situation, rather I was running from it. I hated living this way. I saw that I had two choices, to let this disease consume me totally physically and mentally, or to face this monster head on and fight. I chose to continue living and to fight with all that I am.

The first few years, I felt an urgency to pack in the experiences, but now realizing I was missing out what was really important in life. I guess now I still push life's envelope, but I try to enjoy and savor each experience and not rush to the next.

As time progressed, so did the disease. I knew from the beginning, I would take any and all measures to prolong my life, but I couldn't or wouldn't allow myself to think that far. My form of denial was not to be around anyone who had deteriorated further than me. I regret this now, because they had so much to offer me.

Changes and challenges began to present themselves; I took them on, though in a reluctant manner. Leg braces, cane, walker, scooter, wheelchair, feeding tube, communication system, BI-pap, and finally a ventilator were all met with resistance, but brought very welcome results. The vent was the change I feared most of all. [see David's Story on the vent page]

God bless and keep fighting, David

[Back to top] [TPALS Home] [Back]