25 February 2010

Number nine, number nine . . .

I think the one question that is guaranteed to drive me completely mad is:
On a scale of one to ten, ten being the worst pain you can imagine, how would you rate your pain right now?
I hate that bloody question. Mostly because I never know how to answer it. Is this pain a 6 or an 8? It hurts a lot, but nowhere near a couple of hemorrhages I have had. So do I say it's a 5 because it is only about half as bad as the bleed I had in my arm, or is it an 8 or 9 because it still hurts like hell. I think that for most people the worst pain they can imagine is pretty much the worst pain they have experienced, and when I was twelve I was pretty sure I had experienced the worst pain imaginable. As it turns out, I might have been wrong, but that is a story for another time.

It was when I had the hemorrhage between my kidney and the membrane around it that I mentioned in my last post. By the time the ambulance got me to the University Hospitals I was no longer able to respond to anyone or anything. My universe had become a white/red searing, indescribable point. It was no longer in my back, it was everything. At times there wasn't even a Me anymore, there was just pain.

It was so bad that for most of the next three weeks my mind said this wasn't in its job description, and just shut down. At various times I was aware, or at least the pain existed, but I could not find anything beyond it to communicate with. It is almost impossible to describe, because there was no temporal or spacial divisions to give anything a reference point.  Nothing was linear, and cause and effect were not noticeably present.

It was sounds I noticed. The voices of my mother or father would drift in from somewhere, and then drift away again. One of the times my father's voice was out there I realized he was reading a story to me. I didn't know what it was about, but it seemed pleasant. Somewhere my being started toying with the idea that I might be something separate from this pain. After that my parents' voices would often come around reading stories to me. I never quite understood what they were saying, but I knew they were there.

Other voices were also drifting in. Sometimes they were nurses I knew talking to each other, sometimes they were talking to my parents. A strange, male voice would talk, and one of the times it was talking to my mother's voice I heard her call it Dr Jones. This voice called Dr Jones had an unusual speech pattern, and stuttered when trying to say certain soft consonants like 'w' or 'm'.

I was very tired of being this pain, and Dr Jones' voice was talking to my mother's voice. I was also very tired of Dr Jones' voice. It wouldn't let me drift back into the black where it didn't hurt so much, and it was saying, "I'm sorry. I don't think he w-w-w-will m-m-m-m-make it through the n-n-n-n-night." Then the voices drifted away.

A nurse's voice was saying, "Guy, honey, we're going to move you out to a hall room where it'll be quieter for you."

I was raging. The parts of me that weren't the pain were screaming. I didn't want to go out to the hall rooms. That was where they took you to die. For the only time when the pain was everything I found a voice, and am told I kept saying, "No. I want to stay here. No. No." Mom's voice came through and said not to move me without her or Dad's permission, and they or I drifted away again.

It was a bright, sunny day and I was awake. I did not wake up—and did not remember being asleep—but I was in obviously in a hospital bed and it was a bright, sunny day. I was, however, incredibly tired. I didn't want to sleep, I just didn't have any energy. And the pain didn't exist. Dad was reading a story from a "New Yorker" to me. When he turned the page he looked up, and kind of jumped when he saw me looking at him.


Mom was over by the sink talking to a nurse. They came running over. By the time they got to my bed Dad was standing up next to me petting me on the head like I was a puppy or something. Everyone seemed to be a lot more excited about me being in the hospital than I thought necessary, but Dad's work-hard hand felt exceptionally good.

Eventually I found out it was almost four weeks later than I thought it should be, and decided I was very, very hungry. It was, in fact, a new month, and Dr Jones and his teammates had been replaced by the new rotation. About a day after the pain disappeared I started urinating blood, and they never, to my knowledge, figured out what caused the hemorrhage.

A year later I was being admitted for some kind of routine bleed, probably my knee, and after the third year student and intern had done their thing, the first year resident came up to my bed. "You m-m-m-must be Guy."

I had never seen him before, but I knew that voice. I said, "Hi, Dr Jones."


I don't usually do disclaimers, but.....

Dr Jones' name was most definitely not Dr Jones. It could have been, and I did indeed get treated by a couple of Dr Joneses—one, in fact, was the all time worst at starting an IV—but it wasn't.


  1. sitting here, reading your story. Thinking that I needed to be told this. Remembering that place where nothing exists but pain - I was there, and it was timeless.

    Downstairs, the factor is warming up - the Eldest went running with me today, and just admitted that his hip hurts.

    Thank you.

  2. Guy, my name is Beth Marshall and I work for the National Hemophilia Foundation. I'd like to talk to you about something for our magazine, HemAware. Can you please email me at bmarshall@hemophilia.org? I can't find any contact information for you on your blog.



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