27 November 2009

I visited your house again . . .

My maternal grandfather was born on the 10th of August, 1874. I know nothing about his ancestors except for the names of his parents, but he was, as it turned out, a bleeder. I don't know if his family used the term 'hemophiliac,' or if they even knew the term, but by the time my mother was born in 1919 he had been diagnosed as having hemophilia.

There is a family story that when he was about five or so he was kicked by a horse or a mule. Like so many family legends it will often get bogged down at this point while various aunts argue the finer points of the animal's species. Horse or mule, the upshot of the episode was that the kick dislocated his hip. The treatment for this kind of injury was, I have been told, fairly basic. A couple of burly men take firm hold of the patient's torso while another pulls on the leg until the joint slips back together. Not an altogether pleasant way to spend an afternoon.

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09 November 2009

All I want for Christmas are my two front teeth . . .

Until I was about ten or eleven it seems that every hemorrhage I had was either my knee, usually the left, or something to do with my face. On one trip to the doctor after using my nose and mouth to break a particularly hard fall he asked me, "Have you got something against your face, son?" When I was a toddler all my pictures for about an eighteen month period show a large, bruised lump in the middle of my forehead.

Cutting teeth always seems to be a very worrisome time for the parents of guys with hemophilia. (For the record, I detest the word hemophiliac—I know it just means a person who has hemophilia, but I hate the way it sounds) Anyway, in my family, and for many others I've talked to it has always been almost disappointingly uneventful. My younger brother and I seeped a tiny bit around a couple teeth for a couple days and that was about it. At last report my grandson did the same.

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07 November 2009

They call the wind . . .

In a past post I mentioned I had two Hallowe'en stories I wanted to tell. Since Hallowe'en is over, and Thanksgiving is quickly approaching, I think I should probably get around to the second story. As for Hallowe'en here, it came and went with nary a 'boo.' We have had our fifth straight year (as opposed to all those sexually deviant ones, I guess) without a Trick or Treater, which is a good thing since I haven't bothered to buy candy for the last three. And before I move on, what is the correct spelling for one who goes Trick or Treating? Does it end with '-or' like actor, creator, and facilitator; or does it end with '-er' like singer, engineer, and teacher? Microsoft's dictionary detests both (which is enough to make me want to use both), and I don't find the term in my American Heritage Dictionary of the English Language (4th ed) although it does list the past tense, or perhaps the passive voiced, 'trick or treated.'

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19 October 2009

I hurt easy, I just don't show it . . .

It has been brought to my attention that I expend a lot of energy giving hemophilia a rather rosy glow. It seems I give the humorous incidents precedent, and attempt to keep the painful truths behind a curtain, safely out of sight. That perhaps I trivialize the condition to the detriment of all those who must struggle with its realities every day. How can I expect society to understand the seriousness of our pain and struggles if I keep talking about Castor oil induced fifty yard dashes, and making crippling knee hemorrhages sound like an everyday occurrence not worthy of treatment. I am making light of the most devastating thing to ever happen to these people.

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16 October 2009

The zombies were having fun . . .

I have two Halloween stories I want to tell. At first I was going to do both of them in one long, involved post, but I know that many people—my wife, primarily—cannot, or will not, read anything longer than two or three paragraphs on a computer screen. (And yet, she can spend hours examining and comparing spread sheets the size of Texas until she finds the one tiny discrepancy that shows someone somewhere did something naughty. Go figure.) So in the interests of those people—my wife, primarily—I will tell them in two separate posts that are only sort of long, and not very, by my standards, involved.

The first one involves jack-o-lanterns. Every year around the first week of October each kid on 6-West would get a small pumpkin which we would then carve into the scariest, or weirdest, jack-o-lantern we could manage. The jack-o-lantern would then sit on our bedside stand until a few days after Halloween.

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03 October 2009

When there's too much of nothin', no one has control . . .

I have been mulling over this post for quite some time. Not simply because it is embarrassing. If I stopped telling stories just because they were embarrassing I would have about four and a half minutes of not quite boring material. Nor is my reluctance cause by the subject matter. With a bit of finesse the subject can be presented in a manner that is only slightly offensive and mildly scatological. No, the reason I haven't gotten to it, like the reason we don't do so many things is: it's hard.

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17 September 2009

Don't be nervous, don't be flustered, be prepared . . .

I have already talked about the unfortunate semester I spent at St Elizabeth's when I was in the third grade. Believe me, I only scratched the surface. There was, for example, "Spelling Period." This was not a part of the day devoted to studying spelling, and perhaps having a quiz like any normal teacher might have devised. It was a period, usually about thirty minutes long, during which Sister Rose spelled every word she would normally say; and you, if called on, were expected to do the same. When your sentence came to a punctuation mark like 'comma' or 'period' you said the appropriate word.

I hated Spelling Period. I have learned over the years that I do not assimilate things as quickly when I hear them as I do visually, and I spent most of Spelling Period wondering what the heck was going on. Sister Rose would be up there yammering on, "A•N•D•W•H•A•T•I•S•T•H•E•C•A•P•I•T•O•L•O•F•M•I•C•H•I•G•A•N•comma•G•U•Y•question mark"

When I heard that "comma•G•U•Y•question mark" I knew I was in trouble because I didn't have the slightest clue about what the question was. I got very good at spelling out, "I•D•O•N•O•T•K•N•O•W•period."

But as much grief as Sister Rose gave me, she was not the worst person I ran into that year. And like the good Sister, this man also felt he had God on his side.

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02 August 2009

Ah, but I was so much older then . . .

When I think back on it, it seems that a good deal of my younger life was concerned with, or at least references, the wards and floors of the University of Michigan Hospitals. Just as I might tell you about walking down a street in Buffalo in the winter, and expect the place name to elicit a certain set of connotations and images; telling you that this or that happened on 8-West or 6-East gives the story, for me at least, an atmosphere that it could have no where else.

Moving from one floor or ward to another was also a kind of rite of passage, and meant I had, with luck, become a bit more mature. Since we didn't move to Michigan until I was almost six, and my first hospitalization wasn't until I was seven, I started out on 6-East.

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23 July 2009

See the man with the stage fright . . .

It happened when I was nine years old, which would make it the summer of 1955. Having been fed lunch my brother and I were invited by our mother to spend the rest of the afternoon outside. Actually, it wasn't so much an invitation as a declaration of what was going to happen. She had cleaning to do; soap operss, Queen for a Day, and Liberace (the last two were different) to watch; and she didn't need two young boys doing their best to distract her.

To be honest, Mom did not really have to say very much to get us out of the house. The last thing nine and seven year old boys wanted to do on a nice summer day was stay inside. We had ants to watch, a tire swing to break our arms and/or necks on, and a cardboard rocket behind the shed to fight invading Martians in. At the very worst we could sit on the back steps and watch our cat taunt our dog by staying just an inch or so beyond his reach.

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25 May 2009

Dear old Golden Rule days . . .

The school I went to when I was in first and second grade, Central, was built a little before World War I, and the architects had certainly never heard of the Americans with Disabilities Act. (Probably because it hadn't been passed yet.) To get into the thing you had to go up six or seven steps, my classroom was on the second floor, and the restrooms were, of course, in the basement. The steps in the stairwells were made of some kind of stone that had been rounded by fifty some years of use. They were also slick as ice whenever there was the least bit of moisture on them.

Because my crutches would often just slide out from under me on those steps the principal, Mr Green, would carry me up to my classroom in the morning whenever I had a knee hemorrhage, and then back down at the end of the day. At lunch time he would carry me down to the lunch room and then back up to the classroom, and if I needed to go #1 or #2 Mr Green would carry me down the three floors to the restroom. All this being lugged about like an infant was just a bit humiliating for me, and didn't do Mr Green's bad heart much good either, so I often didn't go to school when I had a knee bleed.

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23 March 2009

Roger, draft dodger, sneakin' out the cellar door . . .

In October of 1964 I turned eighteen. Eighteen was that magical semi-step into adulthood for young men that meant that you were still far too young to drink alcohol, except in the state of New York, and still could not vote, but you were now mature enough to spend a few years in the Army. Several weeks before my birthday I received a large envelope in the mail from the Selective Service with a nine or ten page form I was to fill out and return before said birthday. I really don't remember much about the form except for thinking, "I haven't lived long enough to have answers for this many questions." Or something like that. That is at least the gist of my reaction which was a very complex mixture of thoughts, emotions and panic which at the time got edited down to something which probably sounded more like, "Damn!"

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06 February 2009

Johnny get angry, Johnny get mad . . .

I had my first run in with a social worker when I was about sixteen. I was in the hospital with some kind of hemorrhage—most likely my knee or hip, but who knows. One afternoon I was sitting in my bed reading, just minding my own business when a somewhat older (late twenties or early thirties) woman came up to my bed and introduced herself. At first I thought she was from the Hospital School because she wasn't wearing any kind of uniform or doctor's lab coat, but it was the wrong time of day for them (and I knew all the teachers) which left the Chaplain's office. I was not in the mood for another discussion about how some god, or his son, could help me through this "difficult time," or perhaps even end them forever. (If you took their reasoning to its logical end this god, or his son, was responsible for the "difficult time" in the first place, and I was just not quite ready or willing to thank him for having bestowed this special blessing on me. But I digress.)

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01 February 2009

I can see by your eyes friend your almost gone . . .

Yesterday, as I sat in the ER waiting for some pain medication to take hold, I made what I considered a cogent observation. Or it could have just been the drugs.

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