And, oh. I tested HIV-positive just before all this began.
In between my ICU adventures, my life did not stop because I was ill. A guy I was dating while temporarily separated from my partner turned out to have "issues." He lied, verbally and emotionally abused me, and spent my money. The problem was that I actually loved him and thought I could make it work.
You've just got to love denial.
While I was in the middle of confronting him about staying out all night or dodging flying objects aimed at my head, my mother became gravely ill. As I'm a nurse-practitioner, no one needed to tell me she was going to die. It was not a matter of if but when.
I think I was on my first chest tube insertion when Mother finally passed. With my sister and brothers, and with a hole in my chest--and in my heart--I buried my mother. Sometime after my second lung collapse our other mother died. Our wonderful aunt, my mother's sister, who'd lived with us her whole life, died suddenly of a heart attack. It was only six days after our mother's funeral.
When we called to the funeral director again to make my aunt's arrangements, he cried. Making a funeral director cry is a clear indication that life is treating you hard.
Chest tubes 3 and 4 came somewhere around this time, but life was a blur. I had wasted down to 140 pounds from 190 and had seen more attractive days.
I had doctors and nurses snap at me because I was in so much pain and yet still expressed concern about my muscle loss. "You know, you're lucky to be alive!" was their standard way to shut me up.
But shutting tip is something I have never been good at. All my years of AIDS activism kicked in with a bang. My partner and I demanded, screamed, and threatened in order to get me pain relief. I had to constantly ask where my AIDS medications were and then make sure I got the right ones.
One night I said to the nurse, "These are not the right AIDS meds."
"I'm sure they are. Just take them."
"I am sure they're not," I snapped.
I was just about to telephone a prescription for my AIDS meds to the CVS pharmacy across the street from the hospital, to get my own supply, when the correct pills arrived. And all of this I was doing while in incredible pain, attached to machines and intravenous lines, and with the ever-popular Foley catheter draining urine out of my bladder being used as a jump rope by the night staff when they checked on me.
Slowly, I improved. I checked out.
OK, nightmare over, I thought. Nothing bad can happen now. (Cue God, laughing.)
Back home on the Cape I'm healing slowly. Instead of doing bicep curls with 50-pound dumbbells, I use cans of soup to rebuild muscle. A walk around the block requires rest periods.
Earlier this year my sister called to tell me that my father, who has been a near-teetotaler his whole life, was diagnosed with a rare and fatal form of liver cancer. He had only weeks to live. Five weeks later he died.
So these past two years have seen me survive the terrorist attacks, abuse, loss, and even my own stabs at death. You know what? It wasn't all that bad. I cried more than I ever thought possible, but I learned much more.
By now everyone should be hearing Peggy Lee singing, "It that all there is?"
I learned that all my years of advocating for people with HIV had personal benefit. At a very low point in my life I could draw on the lessons learned from the early days of the epidemic. They saved my life.
Ferri is managing editor of NUMEDX.com and a nurse-practitioner in Provincetown, Mass.
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|Title Annotation:||my perspective; AIDS patient recounts year of treatment for his disease and loss of his parents|
|Publication:||The Advocate (The national gay & lesbian newsmagazine)|
|Date:||Nov 11, 2003|
|Previous Article:||Prison break.|
|Next Article:||Rants & raves.|