Once, when I was nine or 10 years old, the swimming instructor rowed us out to the raft about 150 yards from the shore. We then spent an hour learning how to dive into deep water, while he watched from the boat a few yards away. At the end of the lesson, he said that was enough for today. One of us—could have been me—asked him about getting back to shore. His reply was, “The quickest way would be to dive in and start swimming.” So here we go.
As far as the easily explained stuff is concerned, I was born in 1946 in Idaho, grew up in Michigan and currently live in Arizona. After high school I went to college and majored in literature and philosophy. As you might expect, with an educational background like that, I spent most of my working life doing a variety of jobs, ranging from house painting to being an optician to retail management. For the last 22 years, I worked in college bookstores as the textbook manager. A few years ago, the campus intrigues and politics, the corporate demands and the general hostility inherent in that occupation were having a negative effect on my health, and I quit.
Currently, my interests are cooking, literature, music, learning to speak and read Japanese, and writing self-indulgent essays about myself. My family means more to me than many people suspect and is one of the main focal points of my life, but since they have strong opinions about their privacy, I will try to avoid dragging them into these little exercises. Suffice it to say that there are current and former wives, two sons and a daughter, a grandson, a mother and a couple of siblings, et al, and on a good day several of them might be willing to admit we are related.
And I also have hemophilia B.
My maternal grandfather was also a hemophiliac. I’m not fond of that word—to me it has an ugly sound—but I prefer it to “coagulatorially disadvantaged.” So were a couple of cousins and my younger brother. I grew up hearing stories from my mother, and the occasional aunt or uncle, about how Grandpa dealt with joint bleeds and tooth extractions, the point of which was often that he had survived similar, or worse, hemorrhages and made it, and so would I. It seems the treatment for a joint bleed—aside from admiring its size and symmetry—was bed rest if he was lucky, which, come to think of it, was, with the addition of ice, often the treatment for a joint bleed for me. The treatments for tooth extraction were, for both of us but in vastly different ways, rather messier.
Several years ago I started a blog where I, a newly retired, frustrated writer, could post rambling little essays that untold millions of readers—not just my wife—could ignore. In that regard it was an unmitigated success, although recently my readership has climbed into the high single digits. Over time it evolved into a kind of history of what it was like growing up with hemophilia in the ’50s and ’60s. My hope is that my grandson, who also has hemophilia B, will someday get a glimpse of the world I knew and see his own place in his world a little more clearly. After all, you can’t really know where you’re at if you don’t know where you started. (Spinoza said it a little differently, but the idea was pretty much the same.)
Now I am approaching the age of my grandfather when I knew him, and like many soon-to-be-elderly men, I have this need to let everyone know what it was like in my day. Over the coming weeks I will do just that. I will strive to be interesting, or at least to spell the words correctly, and promise to never relate how I had to walk two miles in the snow, uphill both ways, carrying my brother, to see a hematologist or, if you’re British, a haematologist.
Read more Guy Boss at the Missing Factor.