Tuesday, September 16, 2014

The Liver Chronicles - Getting The Word

Knowing you have a catastrophic illness is never a "fun" thing...Fighting for your life is instinctive and at the same time deeply personal. It seems like for every step forward I made, I was knocked back three but I kept trying...

When you get the news that your treatment is worse than the disease and there are no experimental treatments that can even be considered thanks to the damage already done and nature of the disease itself...it is the most surreal moment you can experience. Everything goes in slow motion and little details suddenly become major issues.

The specialist explained my mortality rate is insanely high. The liver disease will probably not kill me. Cardiac arrest from the blood clot seems to be the odds on favorite. There are medicines I can not even take as they would cause me to bleed out. No quick fix. No getting better. Just marking the days off a calendar. I hope to enjoy whatever time I do have left while I can muster some sort of quality of life but it will not be easy but nothing ever has been for me. I came from nowhere to become one of the better known independent writers for good or bad. Life is a 24/7 learning curve and as Coleman Hawkins said, "If you ain't making mistakes then you ain't really trying."

While they have danced around prognosis, they are now saying two years and the last few months will not be pretty if I start going through major organ shut down...Come on stroke! If you have a loved one in this position, never say "Get better" as it sort of devalues the emotional turmoil they are going through. If it is over it is over. Don't talk, listen. Let the person come to grips with their mortality and just let them know you are there. It's tough. You get nervous and you don't know what to say so say nothing, just be there. I thank all of you for being there for me.