I am a mutant. Like elongated man or Mr. Fantastic aka Reed Richards, or Elasti-Girl, I have extra-ordinary stretchy-ness. In my case extra stretchy connective tissues. This gives me the amazing super-powers of growing aneurysms, and increased likely hood problems with my eyes, and skeletal problems.
At 21, I became a Cyborg when I received a mechanical aortic valve and a few inches of Dacron Aorta.
This relates to my second aneurysm. It started growing in my abdomen. If you don’t know what an aorta is, it is the main vessel carrying blood from the heart to the body. The descending aorta is about the diameter of a garden hose. Mine was like a garden hose that had swallowed a rat. It had a significant aneurysm in a rather inconvenient place, as far as surgeries go, because it was where the aorta joins on to the spine and to the kidneys. The type of operation no one wants to do until it is absolutely necessary because of the significant risk of permeant kidney failure, paralysis of the lower half of the body and death. It was a watch and wait situation. I would fly to Johns Hopkins from Maine every 6 months and they would measure the aneurysm, waiting for it to reach a certain size before it was worth the risk of surgery. While waiting for the aneurysm to reach this size, it dissected, which means it tore, and I was life flighted to Boston to a Harvard teaching hospital, and operated on to repair the 18” of torn aorta with Dacron.
The surgery was many hours and required about one hundred people working in shifts, including the chiefs of 4 departments. Obviously I survived. That is the desired outcome. And lucky person that I am I am now “perfect”—meaning I can walk, my kidneys function and I am alive.
The moment that I am here to talk about is in the middle of the hospitalization, after the surgery, when I am in Intensive Care Unit, that I will call the ICU. I was in surgical intensive care, a place that most people will spend a day or two in after surgery before they can go to a step-down unit. I was there for over two weeks. Actually, I was many places in that two weeks. I was being held against my will, sometimes tied to the bed, I was in a space ship, I was in the arctic. I was in the desert; I was in a deep well being held in preparation for being killed. I was weak, too weak to fight back against my captors who put me in the bottom of a boat and moved me through underground waterways. A porn ring was being run in the hospital, taking pictures of people like me in states of degradation for publication on the internet, and they wanted to kill me because I knew their dirty secrets. I was on a raft in a raging ocean. What was “really “happening, and I only know this part because I have been told, is that I was on a lot of pain killers (absolutely necessary) and I was on a ventilator for much longer than usual. Every time they took me off, I failed to get enough oxygen. I was taken back to surgery and opened up again to find what one doctor suspected, that one of my lungs had become twisted during the surgery and necrotic (died). They removed a lobe of my lung and finally I started to improve.
For me, the time in between the surgeries was a number of days of what is called delirium. These are vivid hallucination, and for people in ICU they are uniformly nightmarish—the stuff that very scary movies are made of. And it just went on and on. There were some bright spots, the face of my partner, now wife, and the faces and voices of my family.
In 2005, this was before the time when everyone had and iPod or an I-phone. Dru, my partner/wife, had the idea of going to a nearby big box store and buying me an I-pod and headphones and she and my brother loaded on some music on it. They brought this first generation ipod shuffle to the ICU and put the earbuds in my ears and pressed play. It was like a miracle. There was a safe place for me. The place was Stevie Wonder, Brian Wilson, Baby Naptime Lullabies. This music was a place. It was a place away from the pain and suffering and fear and horror. You see, no one knew where I was. When they looked at me, they saw a person with a bunch of tubes and monitors and machines keeping me alive. I couldn’t speak when I was on a ventilator, and when I eventually could speak, I was nonsensical and paranoid.
This moment came, in the middle of all this torture, when I gave up. I thought I can’t fight anymore. If it is time for me to die, that is OK. Death would be preferable to this horror. I couldn’t do it anymore.
The next thing I remember, I was popping to the surface, like a cork in water. By some miracle, when I gave up, I survived. And one of my first cogent thoughts, was that music was the most important thing.
I think people who wear medic alert bracelets should register what music to play in case of emergency. Music not only helped me survive in the hospital but it helped me when I was in rehab, and when I got home. My friend John Cooper came to rehab and played music on the keyboard for me. Aaron Lewis and his friend came to our house and played guitar and violin tunes. I wept. I wept at everything good. Gladys Knight and the Pips –Midnight Train to Georgia, The Staple Singers, Long and Winding Road by Sheryl Crow, Marvin Gaye “How Can You Mend a Broken Heart?” — music lifted me.