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The Other Side of This Life

Since it is the time of year when people start wearing sweaters and thinking about putting the winter quilt on the bed, and here in Arizona it might drop down to the brisk upper 60s at night, I thought I might tell a hospital ward Halloween story. But first a note about the ward. It was long. There were nine beds down each side with about six feet of space between beds. The left side, as you came in, was for girls, and the right side was for boys. All of us were between the ages of 10 and 15. The nurses were, to say the least, busy.

Every year around the first week of October, each kid on 6-West would get a small pumpkin, which we would 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.

Attentive readers will already have calculated that those pumpkins would be on those bedside stands for three or four weeks—in a ward that always seemed to be almost too warm....

One of the few ways I still amaze my wife after thirty-some years (when I'm not irritating her by doing the very same thing) is by remembering little details of a place and time. What really makes her shake her head is that I can tell you—draw a floor plan if I must—exactly how the ER was set up in 1954 when I would pass through it. But, except for very few exceptional bleeds, I can’t remember what was bleeding to save my soul. It completely baffles my wife.

I have always been able to remember the very trivial, like what Dion wore the first time I saw him on American Bandstand, but I draw a complete blank on the more important moments. This is my way of saying I have completely forgotten this girl's name and how I met her.

I believe her name started with a 'D,' which is as good a letter as any, so I'll call her Donna. I have a hunch I met her at the Prehistoric Forest, a tourist trap/roadside attraction in the Irish Hills area of Michigan. I...

We interrupt our riveting story of how I learned to put on my pants after my stroke to bring you some thoughts about a current topic of interest. (And to give me some time to deal with some major writer’s block. I know, you are wondering how, with a topic as potentially exciting as putting on pants, how could you get writer’s block? Well, Mr. Smarty-Pants, you think of the next word.)

Anyway. All across the country, parents of children with bleeding disorders are arranging meetings with teachers, administrators and school nurses to explain the intricacies of their child’s condition—things and behaviors to watch for, treatments and first aid measures to use, phone numbers to call, and all the other needed information.

Somewhere around 1958, I was going into seventh grade for the first time. (Why I would go into the seventh grade more than one time will be dealt with later.) In our school district, this meant I was leaving elementary school and going into junior high,...

Around 1 or 2 a.m. on July 11, 2010, my wife, Michelle, drove me to the hospital. As it turned out, I was having a stroke. Actually, I’m a little confused about that. According to Wikipedia, about 87% of what we call strokes are of the ischemic variety, which means the blood flow to the brain is interrupted by a blockage. A clot, or perhaps plaque, gets stuck in an artery, and blocks the blood flow to part of the brain, killing cells and causing general mayhem. Being a hemophiliac in good standing, I certainly did not have a clot blocking the blood flow. What I had is a hemorrhagic stroke, which is completely different. If only 13% of strokes were of this hemorrhagic type, did it really count as a stroke?

Instead of no blood getting to my brain, far too much was—just not the right way. If I read the doctor’s notes correctly, I was actually bleeding in two separate places. The major hemorrhage was about halfway back on the right side. There was also a place in the front of my...

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 has been brought to my attention—again—that I expend a lot of energy giving hemophilia a rather rosy, if not inflamed, glow. It seems I give the humorous incidents precedence and attempt to keep the painful truths behind a curtain, safely out of sight. 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 playing tricks on interns and making crippling knee hemorrhages sound like a minor inconvenience not worthy of treatment?

Several short, pithy rebuttals immediately spring to mind when I’m confronted with these kinds of people and accusations. One or two of my short, pithy rebuttals are, I think, actually possible with a couple years’ training, and a couple of the others would need some fairly...

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...

Until I was about 10 or 11, it seems every hemorrhage I had was either my knee, usually the left, or something to do with my face. During one trip to the doctor, after I used 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 18-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. 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.

This is...

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....

Like I said before, we moved to Michigan in 1951, and my brother and I obligingly didn’t bleed for almost a year. Then I fell while playing tag (or something; it was almost 60 years ago, for Pete’s sake) and cracked a molar in half, which earned me a ride to the dentist’s office.

My memory of the day picks up as my mother and I are walking through the lobby from my dentist’s office to my doctor’s office. Dr. P, the dentist, had decided the cracked tooth must be pulled, but I have hemophilia, which tended to complicate things a little. I had already waited for more than an hour while the two doctors discussed the options, and this little trip over to Dr. D’s side of the building seemed like just one more way to delay things. I had a feeling they were building up their courage, like when I would stand on the edge of the diving platform trying to get my legs to jump. I...