A couple of friends and I were talking the other day over sandwiches and vanilla phosphates. (We’re a hard-livin’ bunch.) In many ways the conversation was both very typical and not so typical of what you’d expect from three middle-aged, middle-of-the-road guys. The typical bits were about jobs, wives, kids, cars, the tattoos on the waitress and such. Not so typical was the total absence of any mention of football or baseball and a lengthy discussion about what it means, has meant and will mean to be living with hemophilia.
Hemophilia has always been a condition of the young—with good reason. While researching a science project in junior high school, I came across an article that said, if my memory serves, that in 1950, 90% of all hemophiliacs died before the age of 16. Since it was 1958 or thereabouts, and I was approaching 16, this was not a huge morale builder. (As a comfort, we were told that if you managed to live to 21, you were pretty much home-free. No one ever fully explained why.) And I have to admit that, from what I could see, the article was pretty much right.
As a young boy and teenager, I only knew of two men who had hemophilia and were over the age of 20. One was my grandfather, who lived to be 86. Granddad lived at a, shall we say, much fiercer level than most men, and I always considered his survival to be more an expression of his will than anything else. When he died, I asked Mom what the cause of death had been. She was pretty sure it was because there was no one left he wanted to irritate. (Along with our given name and our hemophilia, he and I seemed to share many personality traits, which has been the subject of many comments and some trepidation in my family.)
The other man was Mr. C in Michigan. He was in his late 50s or early 60s when my family first met him. He was a quiet, gentle man with a sly wit. He was also, as far as I can remember, the only adult with hemophilia to attend the monthly association meetings. All the other adults at the meetings were the parents of boys with hemophilia, physicians, or Mr. C’s wife. The one personality trait Mr. C shared with Granddad was a firm belief that he could, and would, survive. That, and they were both bald.
However, as the song says, the times, they are a-changin’. The development of the modern factors in the early 1970s coincided nicely with the first wave of baby boomer hemophiliacs coming of age. The problems with HIV infections in the 1980s thinned the ranks, but for the first time, there is a relatively large and growing population of adult men with bleeding disorders. For the first time, we are having to take a serious look at the issues of a relatively large population of aging bleeders.
Health issues are the first ones we think of, or at least the first ones I think of. They can range from whether it’s advisable to take aspirin for cardiac conditions, to whether we should have that shot of heparin when having a heart attack, to how job stress affects our propensity to bleed, to how close we should let a proctoscope get to us. (I have my own answer to the last one, but it’s based more on emotion than logic.)
Do we know if bleeding patterns change as we get older? When I was a kid, the majority of my bleeds were in joints, but for the past 20 years or so, there has been a marked shift toward abdominal, kidney and other soft tissue hemorrhages. Is this a typical pattern, or am I an anomaly? (My wife is nodding her head. Ignore her.)
In addition to the strictly medical concerns, we have to consider a host of fiscal and social issues. Speaking from experience, I can assure you that the average retirement plan may not be adequate to our needs, but what can we do to ensure we have enough to live in comfort and dignity and provide proper medical care? (Every person, regardless of preexisting conditions, has that problem, but it is a bit more pronounced for those of us with hemophilia, von Willebrand disease and other bleeding disorders.) Buying a SuperDuper Lotto ticket each week, while perhaps fun, is a bit thin as far as reliability is concerned. We need a plan that’s a bit more likely to succeed.
Then there are those interpersonal things. It doesn’t matter how much you love each other. It doesn’t matter if the whole Host of Heaven appears before you and decrees that even though the length of her shin is not optimal, she is the one person in the universe you were meant to live your life with and she can cook a damn fine cutlet. Those are fine attributes, and I’m sure they would come in handy—especially the well-done cutlet—but I have seen true love eventually bend, and sometimes even break, under the strain of caring for someone with a chronic condition.
And if you and your partner can somehow maintain a strong relationship, you still have to deal with how your bleeding disorder affects the offspring. Being a parent has never really been sorted through in any detail, but when one of the parents is apt at any time to start bleeding just when it could not be more humiliating for his 14-year-old daughter, family dynamics reach whole new levels of confusion and drama.
And I don’t even want to talk about how being a bleeder will affect the workplace. How much do we tell during the interview process? Is my “blurt it all out and see who stays” method the correct one? I’ve been told no, yes, possibly, maybe, it couldn’t hurt, they’ll never hire you, and one person felt I should wear a different tie. Then, when you’re hired, how much stress should you allow yourself to tolerate? In Japan, salarymen are keeling over on the trains quite regularly, dying of heart failure caused by stress or just dying from exhaustion.
Again, it is only anecdotal evidence, but I am convinced the stress inherent in my job caused between three and six hemorrhages a year, along with making my angina an almost daily struggle. In the four years since I quit my job, I have had two—count them, one and two—spontaneous bleeds we could not pinpoint a physical cause for, both during periods of extreme stress in the family. And not a single angina attack.
At what point do we draw the line, and then how do we get the company to recognize it is a legitimate line that needs to be drawn? We need to know our rights and develop strategies to keep our jobs, and at the same time protect our health. And we need the legal backing to be able to assert those rights.
The point is, we need to know more about how bleeding disorders and aging interact. We must, of course, always maintain our focus on the young—they will, after all, be the ones in charge when we are really old and feeble, and I want them up to the task. But now we must cast a weather eye at the challenges of the growing numbers of middle-aged and downright codgerly hemophiliacs. I, for one, am torn between wanting to live forever—there’s just so much I want to see—and an overwhelming fear of having to wear Depends.
Read more Guy Boss at the Missing Factor.