I was twenty-nine years old when the doctor gave me three-to-five years to live. I had a rare genetic illness called Alpha-1 Antitrypsin Deficiency that, in it’s worst form, caused early-onset emphysema. I had the worst form. A lung transplant could prolong my life, I was told, but it was a very risky with a mortality rate of around 80%, five years after the operation, and an eventual failure rate of 100%. Not to mention that the lung transplant was far from a cure: with the associated medications, lifestyle changes, a certainty of organ rejection, and still-present disability looming over transplant recipients, it is often described as trading one chronic illness for another.
There was no possible happy ending to my story. One way or another, my illness was going to cut my life short.
It was June, 2002 –over eighteen years ago– that I had to start trying to wrap my head around that fact. My children (now grown college students) were infants. Looking back on my twenty-nine year-old self from the perspective of the forty-seven year-old man I am today, it feels like I was not much more than an infant myself. In the time that has elapsed between then and now, I lived a life and tried to realize some dreams. I had highs and lows, successes and failures, wins and losses that I could not have imagined, sitting there in the doctor’s office, eighteen years ago.
And now it’s all coming to an end.Continue reading →