A brief history of Deanna: From 1995-2010

It is the questioning that wars are built on, that folks bottomed out on any kind of spiritual guidance seeks, the kind of answers that can only be really answered when the body quakes and the last breath of this world a person takes.

I suppose in some ways this could mean I have lived my life backwards, from the ending point then rewound sloppily to the beginning, or what should have been the beginning of my sane consciousness, my cornerstones of experience to not knowing, the experimentation that a young life must sustain before knowing what he or she is here to do. Instead we started at the end, the point where life lines are faded, my memories are groggy, and metaphorical mortality became a blood-stained reality. The pictures of youth are a montage of IV tubes and stapled skin, yellowed Betadyne-stained bed sheets and the tech carting around a portable X ray machine, slipping the cold slab under my back, walking far enough out so that I was the only one aside from my roommate radiated. Of 4 am bed checks and blood draws, skin so purple and veins so busted that my fingers often were the only openings to the well. Of a mind so lost inside itself that all I could do was cry in pain for what I hadn’t done, but in reverse cried for what I had, an assuaging of guilt that I hadn’t used my time so effectively.

Granted this all started two weeks before I turned 19. I was a brand new person, released from the perceived prison I had joined for the second time. Deferring admission to Boston University until I had a good plan was an act that was admonished at the time, but those weeks leading up made it a perfect decision, even giving me some understanding to that now aggravating saying, “everything happens for a reason”.

At the time, everything happening for a reason was about as satisfactory of a response as none at all. I was 18 baby-faced and platinum-shorn, having just moved in with my rock star boyfriend when the earthquake finally hit, knocking me breathless on my back. The quake then started morphing into a very acute stabbing pain which left me breathless in the bathroom, numbness spreading from my toes up to my hips until I started screaming and crying. I’d had those moments before, and I thought I could breathe it off. The paramedics were called. They told me there was some flu going around and I might get sick. Sure enough, within a few hours I was vomiting, but it was blood that I did not recognize, not seeing that it is not bright red, but brown in the stomach.

Within 24 hours I was in the Emergency room, my neck having swollen up with blood to the point where I resembled more of a woman with Down’s syndrome than an 18 year old kid looking for an answer. The same stabbing pain was there, and it remained there even after the procedure, for a good 11 days.

My neck, though now shrunken, betrayed a deeper issue. When my visitors saw me, they could see that I was alive because my heart was beating so hard it you could see it move my gown with a strong tug. With a blood pressure of 280/210 one would understand its new visibility, but it never seemed to click with the doctors that something beyond controlling my blood pressure was wrong—something had finally broken inside from all of the shaking that my brain had been going through. The final test, the echocardiogram, betrayed my body’s secret. An aneurysm, later called a dissection, had appeared on my thoracic descending aorta, and had not only caused the chest pain and blood pool, but had always spread downwards to the abdominal aorta. My left kidney had been compromised, the dissection having extended to the renal artery, then causing the increase in my blood pressure, and explained the beating gowns people had been seeing for eleven days.

I went in on October 19th and woke up on October 23rd, with the faces of my friends, now presented as sisters, saying happy birthday. I had no idea, still being intubated, and was well on my way to recovery, as they saw it. The diagnosis came in post surgically, made with tape measurers, and through what they saw inside, a virtual mine field of bubbles, all needing repair at some point.

The pain from that surgery wasn’t enough to write home about of course. But the recovery took a bit longer. I was in the hospital some 40 days before I was let out, to go back to my parents house again to gain back the muscle mass I had lost.

My visiting nurse caught a rare occurrence with me at home some two weeks later, a few days after my brothers wedding, an occasion I sauntered into with my sleek oxygen tank and my best friend as my assistant.

She said to me that I needed to go back, that it was time to get something else checked out. What on earth could have been worse than what I just went through? I still had soreness from the incision under my left breast and around to the back of my left shoulderblade, but I was not broken. I was upset, and had cried, but I knew that my new disease, named mysteriously Marfan’s Syndrome, might cause other problems needing repair in my life. No one suspected so soon, but I was used to clots of bad things, virtual tornadoes of drama, so everyone seemed to be more surprised than I was.

I got to go in this surgery with some how to knowledge. They told me what they were doing this time around, and they had some time to plan. When I went through it the first time, it was just a swoosh–IVs being shoved into every limb, and the goodnight plastic mask over the face before I woke up. This time I got to think about it, staying up late into the night to consider what would happen. They told me there were risks of course. They would be waking me up in the middle of surgery to make sure the blood to my legs was still going there, by asking me to move my toes. And of course, other than death, we might not have such good luck with that kidney of yours.

Uh-huh. I see—so this is something I have to go through one more time not even one month later. And you want to tell me I might not walk. I might not have my kidney function either? The only thing I could think to complicate matters was to drink some of the distilled water on the shelf above my bed, liquid having been strictly forbidden because it could cause suffocation in surgery. I wasn’t really into the swabs dipped in mouthwash they wanted to give me as a consolation prize. If I had any choice in the matter, I was not going to go through this shit one more time with no control. And what little control I did have didn’t do much to complicate anything. Sure, I woke up, got to move my toes even. But the kidney hadn’t fared as well, and had decided to throw the towel in much as I had wanted to, but its game was a little more painful than my thoughts of a suicide attempt. Dialysis every day for a few days, then three times a week thereafter, and because I had not been adequately broken in, my pancreas decided to stop producing the enzymes due to its little infection.

Needless to say, I was miserable, letting the get well cards pile up by my cart, unwilling to smile at anyone. I was unwilling to live at that time, and I realized that all of my youth inspired anger and deprecation was absolutely nothing to having lost full control, to having lost half my deck of life, to have the whole pile of cards and chance explode in my face. That was pain, but I would still dream of my routes of escape, the hundreds of times I had lept out my window over the years, happy that I had a moment or two to remember before I was not there anymore. I had run out of tears sometime before Christmas that year, and just stopped caring enough about anyone or anything. Future and all of that had a foreboding feeling attached to it, and it was then I decided it didn’t matter what plans I had made, because I had obviously done something terrible to be there.

Sometime after New Year’s of 1996 my kidney kicked in, much to my surprise. At that point I had spent weeks daydreaming about how to figure out if I should get the nurses to suffocate me with a pillow without fear of vengeance taken out on my behalf. I hadn’t wanted to be there, I had bald spots all over my head and I had shrunken from 155 pounds and 5’10 to 115 lbs and withered. I was done, and yet, my body said, I’m not.

So life went on for a while. I had done my research on my new pet, my disease, and all of the books I had read said the median age of death known then was around 47. So what the hell was I worried about, education for what? I should have been spending my time doing all of the stuff I had always wanted to do. The whole concept of future was an abstract thought, not rooted in anything I could touch.

I did try and go back to school one year later, and threw out the Boston University dream for a more manageable package, at Framingham State College. I worked full time, I went to school full time. I was up at 7:00 am, out the door by 8:00, at school until 2:30, and worked for the Bank from 3:00 pm until 11:00 pm, drove myself home and did my work, and still somehow managed to pull off a B average with all of my project management.

I had to drop out some time later—money was tight and my batteries had run dry. Four months after I left I was driving on the Mass Pike when that same familiar feeling came in again, a stabbing through to the heart, and there I was again, on my way by ambulance to Mass General for my third surgery, and first open heart, a repair to my aortic valve and ascending aorta. At this point everything seemed to be a cakewalk. If I didn’t make it, it was okay, life had its fill of me and was spitting me back for something better. I wasn’t really afraid not to make it, as I still felt compelled to think I needed to do something important…we all tend to overindulge our own importance to this existence when things don’t go our way, as if life will answer you and say, yes, you are worthy. Come right in.

Nothing crazy happened then, but I did decide I needed to go do something I wanted to do for once, because my body had plans for me no matter what I was doing. There was no rhyme or reason to any of it at that point. And because all of these procedures ended up being so spontaneous and emergency minded, two complete surgeries turned into three turned into six. So why not just do it?

Six months later found me packing up for New York City. I was going to be a tattoo artist and it wasn’t legal where I was. Of course I would work my dot bomb job, but I aspired to take my art and have people live with it on them until they died. I thought it the perfect metaphor for how things happened to me: pretty until gone Of course I hadn’t counted on it costing me money; I figured it was more of a volunteer and learn experience, an even exchange, if you will.

My main motivation in surviving is making sure I had good health insurance, to make sure that no matter what happened to me, I wouldn’t bankrupt myself or the people around me. On top of this, I knew there were other procedures lurking in my future, a kind of package I referred to as my ticking time bomb.

December of 2005 it all came to a head, and these surgeries were a necessity in sustaining my life. Thankfully I had earned health insurance 17 days before the guillotine fell, and I had to leave work. In March of 2006 I had two corrective surgeries to repair arterial aneurysms in my arm arteries, and bypass them from my carotid to vertebral arteries as well. The first was on my right, the second on my left. I stayed in the hospital from February 28th through March 18th, got out and prepared for my next open heart.

The last open heart was in preparation to graft the aortic arch, the last natural portion of my aorta without grafts or staples to keep it together. The plan entailed repairing my aorta to the point where the entire structure from aortic valve running down along the spinal column to the iliac (that’s leg) arteries would be repaired. I went through this procedure on April 22nd. Complications were more severe with this procedure more than any other before it. I had a stroke which ignited some seizures that took the staff by surprise the night after my surgery was done. Calls were made to my parents and my boyfriend to let them know I was not expected to make it through the night, that despite their best efforts, that it was unlikely I would survive in any kind of recognizable form.

And now I am here, having survived, having gone backwards from what is generally a consideration later in life, heart disease, to a point where I am taking my time back. And the only thing I can do is make this time now count, instead of feeling as if it was all pointless, and all apathetic, and without future, as I had trained myself to believe.

I am a survivor, and I know I am grateful for the time I have been allowed to stay here on this plane of existence, to breathe and walk and have a choice to walk out a certain door. It is something I try to recognize every day, something beautiful, something either in sound or sight, a baby’s smile, a flower–even a building can provide these little moments of light for me. To be able to stroll out even in the bitter cold, the hottest days, to sweat and eat and do the things you wanted to do…well, let’s just say that when your jail is a hospital, it can be a really amazing thing to have a choice.

I went through three surgeries in 2006, and one stroke. When they did the MRI, they saw evidence of a second stroke having occurred within the past year. I went back to work 5 months later, not because I wanted to, but because I know I have to do something. Five months into work, I had a surgery to repair my vocal chords, where they took skin cells from a cadaver, removed the DNA and made this “zombie dust” into a paste which got injected into the vocal folds, to plump them so they would be able to then touch. My voice still is limited. I cannot yell, I cannot speak loudly, people still look at me quizzically when they are speaking to me and I often have to repeat myself. I can’t bartend in super loud places, but I seem to get along just fine.

To be honest, this stuff was difficult, but not impossible to overcome. The thing that really got me through everything was my own inner strength I had cultivated by really getting to know myself all of those years, the love of the people I had around me and the love I have for life. If anyone knows me, they know I have a never say never state of mind and will disappear at a moment’s notice. I am an adventurer, lover of all things beautiful, both inside and out, dreamer, big idea thinker, lover of flying, thrill-seeker and really giving girl. You might have heard of my brunches, and the pool I had set-up out in the back. Everyone was invited, and we cooked up a storm never asking for a penny from anyone. I am big on sharing…because I know I am lucky to be alive right now, and as long as my basics are covered, I feel good about helping others. And getting people involved in something with a good community spirit? Also something I am a fan of, but I am not exclusive…I do not require you be anything but respectful and sane.

Right now I am tandem between Pennsylvania and New Jersey. Once I get this going I can be more solid with JC.