For the past two or three weeks my blog entries, which were scheduled for Monday mornings, have appeared a bit haphazardly. This piece I am writing now is a week or two late. The reason for this disregard of deadlines has been some health issues my wife has been wrestling with for the past few weeks. These pesky worries about her health have taken such a firm grip on my attention that I have found it nearly impossible to write two paragraphs in a row that were heading in the same general direction. Some will say this is a natural state for me, but I discount their opinion as being too firmly grounded in a slavish belief in logical progression.
In my family, I have always been the one getting injured, having unexplained hemorrhages in even less-explained parts of my body, and keeping hematology foremost in the minds of students, interns and residents for the month they were on the service. I am a pro. And while bleeding may not be my vocation—the pay is lousy—I wouldn’t go so far as to say it is my avocation, either. It is, however, what I do best. And for a huge portion of my life I didn’t understand what it did to my parents and, later, my wives and even my kids. Ninety percent of the time it was, for me, just another in a long line of joint and soft-tissue bleeds that—while painful, occasionally crippling and sometimes life-threatening—were just like a hundred others.
I’m not saying there weren’t doubts, fears, moments of panic and many questions whose answers could only be sought during the bleaker parts of the late night and early morning while staring out a window at a dark and empty street. There were plenty of those, but for the most part I was so busy dealing with events as they happened that I didn’t have time to dwell extensively on their philosophic, spiritual or emotional ramifications. My loved ones weren’t so lucky.
Family Anxiety
When my youngest son was born, he had to have surgery that day and another operation a week later. He was in perinatal intensive care for about three months. (Everything worked out. He recovered and grew up to be a fine, if somewhat vexing, young man.) That was when I learned how totally helpless, frightened, guilty, angry and worried you become when someone you love is gravely ill or has been injured. That was also when I discovered how a health problem could divide a family. Luckily, his mother and I were united, but other relatives were sometimes less than supportive. Even with an excellent health insurance plan, we were gripped by a constant, almost overwhelming, anxiety about being able to afford the treatment my son required.
My wife’s recent problems have again shown me that when one member of the family is ill, the whole family suffers. For those of us with bleeding disorders, the situation is aggravated: Even when there isn’t an active bleed, one could be lurking in the darkness. When I or a sibling got chicken pox, we were sick for a week or so. My parents had a week of worry and extra work nursing us, and the brothers and sisters were a bit jealous of the one who didn’t have to go to school or do chores. Then we got better, and things returned to normal—or what passed for normal in our house. But with hemophilia, the parents’ worry and extra work never stop. The child with hemophilia is always getting that extra little bit of attention and being fussed over. He can’t be roughhoused like the other brother. It’s a breeding ground for jealousy, resentment, anger, guilt, you name it.
Talk to Your Kids and Your Partner
I wish I had an answer. Short of a total cure, there probably isn’t one. But I do know the one thing that will help most is talk. Talk to your kids. Explain to them what’s going on and, even more important, listen to them. Let them question why Jimmy gets all your attention. Let Jimmy tell you how frustrating it is to always have you hovering over him. (I think hemophilia invented helicopter parents.) Have them brainstorm ideas on how to resolve the situation. Many or most of their ideas will be goofy, childish, perhaps even hurtful, but one or two just might be what you’re looking for.
Tell them your worries and why certain things have to be done a certain way. Help them understand that being jealous doesn’t make them bad. If you work at having the whole family discuss their issues and make it a safe environment to talk about sensitive subjects, you will have made, in my opinion, huge steps toward finding the answer.
And parents, don’t forget to talk to each other. Jealousy, guilt and worry are doing their best to undermine your relationship, too. If the going gets to be too heavy, call in the professionals. Pastoral counseling, a good marriage counselor or perhaps the social worker affiliated with your local hemophilia treatment center (HTC) could help you learn how to safely discuss the negative emotions and come to terms with them. Could save a relationship. (Unless, of course, one partner has taken to eating sardines on saltines in bed. That’s a deal-breaker.) At the very least, it’ll help you be a better parent.
Sharing With Your Community
Then, talk to others in the bleeding disorders community. In the 1950s, the Hemophilia Association of Michigan met every month on a Sunday afternoon in Lansing. There might have been a presentation by a researcher at one of the universities or someone from the state laboratory, and there was usually a potluck lunch, but the real business of the meeting was the informal discussion among the parents. (If memory serves, there was only one adult with hemophilia who attended the meetings.)
The parents would swap tips on how to best treat a bleed at home, which emergency rooms were most efficient, what had happened when their son jumped off the shed roof, whether football or basketball caused more bleeds, and on and on.
That discussion period before, during and after the lunch probably did more good than the AHG all us kids had that month. It didn’t really stop any bleeding, which only put it slightly behind AHG at the start, but it gave the parents hope. Others had faced their same problem, and now they knew they could also see it through. There were others who understood what they were facing and would be there when it got rough.
Like Red Green always says when he’s talking to us middle-aged guys, I’m pulling for you—we’re all in this together.
Read more Guy Boss at the Missing Factor.