Thursday, November 17, 2011

My Syndrome

by Penguin Scott

I’m not used to feeling uneasy when coming home to visit my parents. It’s not a sensation I much enjoy. It’s sort of like being back at the scene of a crime, but no crime was committed here. This is where I got sick two years ago. But to say I got sick makes it sound like I got a minor cold. This wasn’t just any illness. It was the type of event that was life-changing, and being back here brings about so many memories- as if it happened just a few months ago.

I remember how it started very well. I was home for Thanksgiving with the family. The house was full and some had to stay in a hotel. I bunked at night on a foldout couch in the downstairs living room. We’re a loud group of people when in a house together, and it’s a lot of fun. We played games, shared photos, laughed and contemplated the manner in which we should deep fry our bird without burning the house down. It was like so many other holiday gatherings before, with my grandmother and her daughters in the kitchen, the men sitting around the living room and the cousins downstairs playing and gossiping almost as much as the adults.

Hiking on my parent's property in Colorado

My parents live in Colorado on mountainous acreage. On the first day of my visit, a group of us took a long hike on the property, which left me a bit winded. The next day I felt a pressure in my chest, very much like the one felt after a day of exertion, so I didn’t think much of it. The situation worsened to where I started feeling light headed, complete with a headache. I looked up the symptoms of altitude sickness on my laptop. I had them all except that I was not nauseous. So again, I didn’t do anything about it…this, too would pass. But for the moment, I was feeling badly enough that I stayed home while the family all went to a dinner outing, complete with live music.

Wednesday night, Thanksgiving Eve, I had developed red spots on my arms and legs- they didn’t itch, but were a little sore to the touch. I went to bed feeling ill. I’d felt worse in my life, but I’d never felt anything quite like this. It was such that as I fell asleep, I began thinking about how difficult it would be for someone to close out my life in my absence. Certainly, that person would be my mom, having to go through all my belongings back home. I started to think of all my passwords to the various sites I use on the internet; banking, work, social sites. I didn’t know how sick I was about to become…but somehow I did, and my mind seemed to be preparing me for the worst.

The next day my family drove me to the emergency room. I was short of breath, my head hurt and the pain in my chest was incredible. The spots on my legs hurt, making it very hard to walk. Tests were administered and my body was poked and prodded. I was told it was not altitude sickness, and honestly, two years later, I no longer recall what the initial diagnosis was, but in the end, I was sent home with instructions to drink a lot of liquids and get some rest. The family, who had been jammed in my parent’s home for a few days in close proximity, was terrified that I might be contagious. I felt badly, praying that I wasn’t, for their sake.

By the time I returned home, Thanksgiving dinner was about to be served. Because of how I felt, and possibly from fear of being near me, I wound up eating on a TV tray in the living by myself. I had no seconds that Thanksgiving. In fact, I didn’t finish what was on my plate. Nothing tasted good to me. Everyone else praised the green bean casserole, dressing, desserts and the fact that the house hadn’t burned down with the tasty deep fried turkey. I picked at my plate, not really tasting much of anything.

By the time I went to bed, the spots on my body had spread to my neck and chest. They were very sore and getting out of bed was quite difficult. This was very problematic for me, as with drinking the amount of liquids required by the doctor, I had to get up often to use the restroom. If I hadn’t understood what my body was telling me the night before, it was becoming much clearer at this point.

Sunset at my parent's ranch

On Friday, I felt worse than I had ever felt in my life. I couldn’t get out of bed without a great deal of pain and I was no longer interested in drinking anything. I needed to return to the emergency room. Once that happened, and another examination by the same doctor as the day before, they felt it imperative that I be transferred to a hospital in Colorado Springs. This was partly because the little mountain hospital was not equipped to handle my condition, but also to get me to a lower altitude, which the doctor thought was necessary.

I’m not sure how long I waited to be transferred while lying in that dark room. I was forced to listen to a woman have a total freak out (mostly likely drug-induced) in a room nearby. It was very dramatic, but I was happy to be left alone as everyone else’s attention was on her. I remember seeing the concerned faces of my aunt, uncle and Dad as I was eventually loaded into the ambulance. I also remember how smooth the ride in the ambulance was. That must have been a very expensive vehicle!

I spent the next five days in the hospital. Mom brought me a few magazines and puzzles, as people do. I had my own room with a nice TV on an arm that pivoted to whatever position I needed. I wished I wasn’t so far from my network of friends, who surely would have come to visit.

I never read the magazines. I watched about an hour of TV during my entire stay. I fell asleep when Mom came to visit, so any other visitors would have been a waste of effort. My time was spent sleeping and that was frequently disturbed for numerous reasons; the first of which was that any time I moved, the pain from the red spots all over my body was intense enough to wake me. I was also constantly disturbed by nurses coming in to take blood and administer meds. And it was creepy; I was isolated with an unknown disease, so anyone entering my room had to do so wearing a mask and gown. For the first few days, I didn’t know what anyone looked like.

Having never been in the hospital before, I quickly gained a new respect for nurses. I was well cared for and everyone I encountered had a really nice bedside manner. They were proactive in dealing with the pain I felt. My only issue was that many of the people who came into my room tended to leave without moving my table back to where I could reach it. The pain was such that reaching for it, something I would normally be able to do very easily, was out of the question. I found myself constantly asking people to move my table closer to me before they left the room. Mom thought I was being unreasonable. But being alone in a room and not able to reach for water to quench my dry mouth- well, it was the one thing I had that was normal.

The illness peaked on the third night of my stay in the hospital when my temperature reached 106. At first, I was so cold that they layered me in warm blankets. They felt very good, which was odd for me, since I normally don’t like warm things on me. But soon they removed my warm blankets and started covering me in ice. This upset me and I let them know about it. Up until this point, my attractive nurse with the Australian accent was my favorite nurse. At the point at which she started icing me down, however, I was less than thrilled with her.

My head hurt so badly, I felt as if I were wearing a pain-hat that extended a foot further than my head in all directions. I kept the blinds closed during the day, ignoring what was a wonderful view. I picked at the food, even though I was able to select it from a menu. I’d not emptied my bowels in days. I faded in and out. One night, I woke up thinking it was morning and that I’d slept all night, a first, and thought I was over the worst of it. Turned out, it was only 10PM and I’d only been asleep for an hour. I began to cry. It was the worst I had ever felt in my life, and I suddenly had a thought…so this is how I die.

For four days I stayed in bed, not able to stand, and barely able to turn over. I slept. I moaned a lot. During my stay, I endured a spinal tap and a biopsy and had enough blood taken to fill a new human body, or so it seemed. I endured hell. At one point the pain was such that I asked the nurse to put me in a coma. But in the end I lived, and when I finally got home, I started thinking, well, that wasn’t as bad as I had made it out to be. Surely I had been nowhere near death. Maybe I had over reacted.

Not looking too happy in my hospital bed

That’s what I thought until a month later when seeing a specialist about some lingering effects of my viral syndrome, as they were now calling it. He looked over my notes and looked up at me and said, “You’re lucky to still be with us. Most people die with a temperature that high.” So it really was as bad as I had thought when lying in that hospital bed. And I think my body knew it as early as Thanksgiving Eve.

Many doctors and specialists were involved in my case. No answers were ever found. Every test came back negative. I was amazed to learn, that in our modern medical age, there are still thousands of viruses that afflict people and we have no idea of what they are. It was never discovered how I got sick or where I contracted the virus. It was indeed known that I had a virus. They did learn that my red spots were a separate disorder; normally brought on by a viral condition (my friends called it Penguin Pox). But they could only call what I had, a viral syndrome; a sort of catch-all term simply to give what I had a label of some sort.

A look at my "Penguin Pox"

And two years later I still have issues with being fatigued. It was a whole year before the symptoms of being light headed and dizzy went away. The cold of winter bothered me, where I normally love the cold, and my thinking has never been as clear as it was before the illness. I often forget what I’m saying. There are times I struggle with my health and feelings and wonder if I shouldn’t have died in that hospital.

So here I am, back in Colorado to visit my parents. I’ve been back a few times since then. The first time was very awkward for me; sleeping in the bed I went to right after the hospital and sitting on the couch I had slept on that night when going over computer passwords in my head. The living room has been rearranged, but the bedroom is the same and reminds me so much of the first few days being home after nearly dying.

I’m lucky to be alive and to have caring friends and family for support. As much as I never hope to endure such pain ever again, I feel richer for the experience of coming so close to death. In fact, only a few months after getting sick, it was discovered that I also had skin cancer. I thought it was odd that I was to survive the hospital only to face death again with melanoma. It was also interesting that after all the poking and prodding, no one ever noticed the black irregular-shaped mole on my stomach. No, the cancer didn’t affect the viral syndrome, but the virus is was what led to the discovery of the cancer.

In the end, the nearly fatal virus saved my life. I’m currently cancer-free, but my body is different now. I feel older. I used to enjoy perfect health. Now I have high blood pressure and cholesterol. The fatigue keeps me from being as active as I once was. It’s annoying that I make these complaints to my doctors, and often hear them reply that I’m getting older, but it’s got to be more than just my age that has brought all of this about. Something happened to me in that hospital-something that began to afflict me at home in Colorado. I may be uneasy about getting older and reliving these memories while visiting my parents, but it’s certainly good to be alive!


Want to read more? I wrote about some of the vivid images I had in my head while I was in hospital and poem about being on morphine. You can read that blog here:


  1. WOW!! Scott, I am in awe of your spirit & I'm a breast cancer survivor. I didn't have anything like your "near death" experience. Thanks 4 sharing your story. I have a friend that has had AIDS since 1995 - full blown, not just HIV & his BLOG/diary has been an inspiration to me & my daughter & has become a close friend. His website is
    Take care & hope to C U on the "campground" sometime

  2. love you, buddy. so happy you're still with us, and remember, even though it feels like the pace is too slow, you're still getting better...