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Don’t Be Nervous; Don’t Be Flustered; Be Prepared

By Guy Boss | Published 08.22.2011

In elementary school, as I continued to grow, I tried new things and I found new ways to bleed. During this time my younger brother, Merton, who also had hemophilia, was doing his own bleeding, so my parents came to be on a first-name basis with most of the hospital staff.

Sometimes the hemorrhages were more severe, usually they were more painful, and occasionally they were as messy as that first one. But they are now part of the vast background texture of my youth that melts together as a continuum with few, if any, distinct memories. Sometimes individual interns, residents and nurses will stand out with their quirks or love or meanness, but they are seldom connected to a specific episode.

The hospital quickly became an extension of my home. Its halls and stairwells, the pediatric ward and its sun porch, the lobbies and emergency rooms, are all as much a part of my hometown map as the street I lived on, the pond we swam in and my schoolyard. Just as you do not separate your neighbor’s yard from the rest of your memory world, it is impossible for me to separate the hospital from my memories.

Likewise, bleeding is not a special event for me to be singled out and remembered as something separate like a car accident. It was, like eating breakfast, something I did and dealt with as a matter of course. Just as you cannot remember each and every breakfast in your life, but have composite memories of corn flakes or scrambled eggs or pancakes, which are sometimes pleasant, usually neutral and occasionally unpleasant, there is only a melding of knee bleeds, swollen ankles and other hemorrhages.

Hemophilia: Just a Part of Life

During this early part of my life, I was gloriously unaware that anything was out of the ordinary. About the only notoriety I achieved was because of the spectacular colors my knee would turn during the later stages of a hemorrhage. It would still be quite large, but the painful stages were over, and it would become a swirl of reds, blues, purples, yellows and even greens. It always reminded me of a beach ball. Whenever I would have a knee bleed, the kids would start asking if it had turned colors yet and if they could see it.

It wasn’t until I wanted to join the Cub Scouts that I began to think being a bleeder might mean more than going to the hospital more often than other boys. Somewhere around the spring of the year, Mom asked me if I would like to be in the Cub Scouts.

This was exciting stuff. The snappy blue uniform. Marching in parades. Knot tying. Helping old ladies cross streets. It made my head spin. And if you did a good job you would eventually become, after years of training, an actual, real Boy Scout. I told Mom I would very much like to be a Cub Scout and spent the next week or two looking forward to learning all the secrets and skills of Cub Scouting.

The Rejection

Eventually, it dawned on me that quite a bit of time had passed, and some of my classmates were going to Den meetings and Pack meetings and I wasn’t. I asked Mom about it, and she quietly told me that because I had hemophilia, I couldn’t be a Cub Scout. I was crushed. I don’t remember actually crying, but I know I wanted to. All my life I had been learning what things I shouldn’t couldn’t do because of hemophilia, but this was the first time I wasn’t going to be allowed to figure out a way to still take part.

Over the next few weeks, however, I learned by listening to Mom talk to Dad and her friends, when she didn’t know I could hear them, that the Pack leader’s rejection had been a bit, shall we say, stronger and more personal than simply stating a matter of policy.

He had told Mom that I couldn’t join the Cub Scouts because I was a cripple, and it wouldn't be fair to the other kids. I had no right to hold them back in their activities, and instead of trying to be something I could never be—a real boy—I should be learning to accept my fate and realize I would never be more than a drain on society. I guess he went on to say that I would most likely die young, or at the very best be an unproductive cripple, and it was unfair to me to let me pretend I was like the other kids. To this day, I am surprised that Mom didn’t kill him.

It was at about that time I stopped showing my knees to the kids when I had a knee hemorrhage. Over time I was able to not think about the Pack leader’s opinion of my worth. I didn’t forget his remarks, but at 9 years old, I had a lot of other things to do that were a lot more fun than proving him right.

After I turned 11, Mom came to me again and asked if I would be interested in being a Boy Scout. I said sure, but that we both knew they wouldn’t let me in. However, she said she had been talking to a Scout Master, and he didn't see any problem.

Joining a Troop At Last

I will always be indebted to Mr. Howard (“Skinny”) Wilson. He let me be just another boy in the troop. I don’t know how he did it, but no matter what happened, he made my hemorrhages just another part of learning how to camp out. I also think it helped that the guys in the troop were also pretty decent. They certainly didn’t seem to hold any of the opinions of that Pack leader—at least to my face.

During the Klondike Derby (a winter race in which each patrol pulled a large sled around a course with different stations to demonstrate skills) I would be the kid “rescued” off the frozen lake and treated for a broken leg because I almost always had a knee bleed. It was just typecasting.

Whether I was on crutches or not, when camping I did each chore in rotation with the other guys. The summer we constructed our summer camp by lashing everything (tables, fence, gate) together, the guys lashed together a litter for me—naturally, I had a knee bleed—and carried me through those woods at a breakneck speed that would have given my parents and doctors palpitations. It probably extended the hemorrhage another week, but it was worth it.

The guys of Troop 73, and Mr. Wilson especially, will always hold a special spot in my memory, because they didn’t realize I was a cripple with no future. They just thought I was a Boy Scout.

Read this blog post from The Bloody Good Life, comparing Guy's experience to her own family's.

Read more Guy Boss at the Missing Factor.