An Anniversary I Can’t Remember
I always have a tough time this time of year. Three years ago yesterday is the anniversary of the first time I died. The only reason I know that is from reading Michelle’s posts on Facebook and what she has told me. From what I have been able to put together, I guess it happened when they were putting me on the ventilator to help me breathe.
Those of you who know me personally know much of this story already, so I apologize in advance for going over it again, but keep reading on down because you may find out a few things. For the readers I have who don’t know me, back in early June of 2009, my son and I both came down really bad colds. We both got fevers and Sean went to the doctor and started taking antibiotics. I stubbornly did go to the doctor right away. By June 7th, I went to the hospital because I felt like I had the flu. They sent me home, saying there was nothing they could do and just ride it out. This was all occurring during the whole swine flu/H1N1 breakout. On June 8th, I went to my doctor to get checked and my fever was up to 104 degrees. He told me to go to the hospital and they admitted me. I remember getting to my room in the hospital and that’s the last thing I remember until waking up nearly 4 months later at a different hospital. From what I have been told, I had a really high fever and no diagnosis as to what was going on. They ran every test under the sun to try to determine what was making me so sick but couldn’t find anything and I just kept getting worse. my oxygen levels got worse and worse as the fever stayed until they finally decided I could no longer breathe on my own. I was in a coma when they put me on the ventilator and apparently died during the procedure and was revived. I was too sick and unstable to move to another hospital so I had to stay where I was until I stabilized, but I wasn’t stabilizing, things just kept getting worse. The hospital I was in is our local community hospital and they just weren’t equipped to deal with an illness like mine, whatever it was. Michelle and all my family and friends sat by, worrying and praying, hoping for something to happen. Things would improve for a day and then get worse for 2 days. Finally, after much waiting and haggling and pulling strings, they were able to transfer me to Columbia-Presbyterian Hospital in Manhattan and I was placed in the ICU there. My lungs collapsed and had 4 chest tubes inserted into me to help me breathe.
Everything went back and forth this way until July 11th, when they would start taking me off the ventilator and had me breathing through the tracheotomy tube I had at that point. I was on high doses of pain killers and sedatives which they had begun to wean me off of and still couldn’t talk. I apparently was awake at this point, but I don’t remember any of it. From what I have been told, I would try to scream and cry in pain. This went into August, when the doctors, feeling that my window for recovery was slowly closing, decided to try a procedure that they hadn’t before where they reversed the flow of the chest tubes and pumped antibiotics directly into my lungs to try to clear the infection. Thankfully, it worked. I was slowly weaned off the ventilator, antibiotics, pain killers and all kinds of other medications. They began to do some light physical and occupational therapy with me until on September 1, 2009 I was transferred to Helen Hayes Hospital in Nyack to begin rehabilitation.
This is really when I start to remember things. I do remember a few days at Columbia, but not really and it’s all pretty hazy. I remember clearly getting into the ambulance to go to Helen Hayes and being transferred there and everything that happened there. I think I can honestly say, at least as far as I remember, that it was the hardest 2 months of my life. I had to re-learn how to do everything. I couldn’t really do anything when I first got there and underwent physical therapy, occupational therapy, speech therapy and breathing therapy. When I first got there I could barely move anything at all, was still using the tracheotomy tube to breathe, had to have a speaking valve in place so I could talk and still had all kinds of tubes coming out of me. The therapists there worked me hard to get me moving. I was in some kind of therapy from 8 in the morning until 4 in the afternoon with a break for lunch. It was hard, it was exhausting and it was totally worth it. They kept pushing and pushing me with the goal of getting home. I re-learned how to brush my teeth, hold a pen, feed myself, dress myself, breath and walk. I spent weeks in a wheelchair and was still on oxygen 24 hours a day. Twice they pushed back my release date because I needed more time to heal. When I was finally released on October 31, 2009, I went home with a walker, leg braces and portable oxygen, but at least I was home.
Physically, I am sure I have healed better than the doctors expected. I worked really hard and had a great group of family and friends who supported, visited and prayed for me the whole time. I heard of prayer chains all across the country that included me. The doctors told Michelle and me at various points that I would have to use a walker for the rest of my life. I stopped using it in early 2010. They told me I could be on oxygen for the rest of my life. I was off of it by December of 2009. After an additional 7 months of outpatient physical and occupational therapy, I am much better, though I still wear the leg braces and walk with a cane. On very humid or very cold days I sometimes have trouble breathing from the scarring of my lungs. I have scars on my throat, chest and stomach from all the various tubes they had in me. Goodness knows what, if any, long-term effects I may have from the 2-3 x-rays a day I received for almost 3 months or the extensive amount of time I was on extremely high doses of various pain killers, steroids and sedatives. I still have pain in my feet and from what the doctors say permanent nerve damage there from all the medications and from being in the coma for so long (There still, to this day, is no actual diagnosis to what caused all this).
There’s more to it than that though. What happened to me changed me mentally. Whether I like it or not, this whole experience has had a life changing effect on my life that I have to deal with on a daily basis. I don’t like to bring it up a lot; the people around me had a hard enough time living through it while it was happening so I don’t like to bring it up very often, but I need to vent about it sometimes. That’s where this blog comes in. I need a place to talk about it sometimes. I still have nightmares about hospitals and what it was like to basically be trapped in my own body. The things I remember about the hospital are few and unpleasant, but there are also things that I remember that never actually happened. There was a whole other world going on in my mind while I was in that coma. It was my own private world where things were happening and people existed that weren’t real at all, but they were to me. That’s the only point of reference I have. It bothers me to no end that there is this 4 month gap in my life where nothing exists for me other than what people tell me happened in the hospital. I have no point of reference for anything at all; it’s like that time doesn’t exist for me, even though it did in the physical world and in that world that went on inside me.
And then there’s the question of dying. I have read a number of things on people who claim to have had near-death experiences or experiences of some kind of afterlife for the moments they died, but I can’t relate to any of it. Most of what I have read, the people who have experienced these events were awake in some way before and after the event. I have neither to refer back to, no timeline, no idea of what was occurring. I can’t place that moment in any kind of timeline of what I remember going on in my head, so I have no idea whether what I saw or experienced was happening while I was dead for that brief moment or not, and I find that incredibly frustrating. Everyone tells me you don’t want to remember anything and it was unpleasant; granted, it was unpleasant, but I only know that because that’s what I have been told. Part of me wants to remember some things, or more to the point I want to be able to put what I remember into some kind of context as to what was happening to me physically, and there just doesn’t seem to be a way to do that.
So I go on. I see doctors who look at my file and hear my story and say “Well at least you are alive.” Yes I am, and I am forever grateful for the fact that I wake up in the morning when every doctor was preparing Michelle for my death. But I’m not satisfied with just that. I would like to find a doctor who can help me with the pain I still have and hopefully solve it, but there are times when I need to talk about what happened to me. For a long time after I got home, everywhere I went and everyone I saw I had to go over the events with. Time has eased that and I do appreciate the fact that so many people have had me in their thoughts and still care about my well-being. I can’t express my gratitude enough for what everyone did and continues to do for me and my family. While time goes on and we try to move past it, I have come to the realization that I don’t think I can ever completely move past it; it will always be part of who I am now, whether I like it or not. Over time, I’ll come on here and write about things – things I remember, things I want to forget, people who helped me and saved me and reflections on how it all makes me feel. Sometimes it will be in the form of writing like this, sometimes I’ll incorporate it into my fiction, but bear with me. Sometimes I have to let it out somehow. There’s still a lot to be said about it.
Filed under: Memories, My Story | 7 Comments
Tags: anniversary of my death, hospital stay, my story, swine flu
Wow a terrifying experience for you and your family!
Cheryl – It was a pretty harrowing experience, more so I think for my family since I was not awake for a large portion of it. Thankfully it has been almost 7 years since I left the rehabilitation hospital and life is pretty good. I still walk with a cane, but if that’s the worst of it I am okay with that. Thanks for the comment!
Sometimes not remembering is a blessing (for you) not too much for the family. Strange that they could never give you a conclusive diagnosis though?! Sometimes, things just can not be explained. Have a good weekend Mike!
Thanks Cheryl. I actually finally just got a portion of my medical records from Columbia-Presbyterian where I spent the most time. It’s 466 pages long and I haven’t had time to really go through much of it yet but I would like to see if anyone ever had any ideas about a cause. Perhaps you are right though- some things are better left unsaid. Have a good weekend yourself!