The Other Side of This Life

To explore where I’ve been so I can better decide where to go next, I’ve spent the last day or so re-reading my previous posts. When I got past the more than occasional, awkward sentences, and the frequent inept phrases, what I noticed most was how much was left untold. Much of the silence can be explained. Sometimes the item glossed over is just not important to the story, or it would take the piece in an unwanted direction. Sometimes I don’t remember enough of the details to explain the reference. Sometimes I just don’t want to.

And sometimes, it was just such a part of my everyday life at the time that I forget that the modern reader may not know what I’m talking about. For example, in my second article, “I See Your True Colors,” I talked about how the only place we clotted was in the needle. Nowadays, what with ports and PICC lines and peripheral IVs with heparin locks, it’s very likely...

It happened when I was 9 years old, which would make it the summer of 1955 or thereabout. 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 and soap operas, 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 9- and 7-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.

That afternoon, however, our backyard seemed a little confining, so we decided to explore the semi-vacant lot behind our neighbor’s house. There were often priceless treasures, along with a lot of...

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....

I was born in 1946 in Idaho. My brother was born in 1949 in Oregon. These two facts could give one the impression my parents were a bit, shall we say, nomadic. That impression would be correct.

My dad was a baker and a bit of a free spirit, and Mom was happy to be wherever Dad was. So when the urge struck, Dad would find a job in The Bakery Times, or whatever, in a town that sounded good, and we would move there. At least that was the story we were told, but I have come to believe there was another reason: They were looking for a doctor.

In the late ’40s and early ’50s, there were no hemophilia treatment centers, and finding a doctor who knew more about hemophilia than how to spell it was, shall we say, difficult. Mom and Dad were told by one doctor there was really no such thing as hemophilia; another doctor...