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By Robert Kaufman,
An Aplastic Anemia Patient and BMT Recipient
The emotional strain of supporting a loved one through aplastic anemia can be devastating. From the day I was diagnosed in 1987, until my transplant in 1993, I watched my own parents and family lose a bit of their sanity as they attempted to deal with what was happening to me.
All too often, the patient fails to realize that he or she is not the only one affected by this disease. And if treatment ever comes down to a bone marrow transplant, it becomes more important than ever for a patient's support circle to understand and learn how to become effective communicators.
The difficulty lies within the fact that all patients are different. Through my tours of the hospitals I have seen all sorts. Some will chew any set of ears that walk through their door. They will talk about aplastic anemia, baseball, the weather in Europe...anything. And some patients completely shut themselves off, living in a state of denial. To them, if they don't talk about the disease, if they don't talk about the transplant, then it simply doesn't exist. In this way, they relieve themselves of having to face the fact that not all transplants are successful, and that death may be an unfortunate possibility.
Most patients, fortunately, fall somewhere between these two extremes. There were times when I wanted to talk and there were times when I wanted to be alone with my overwhelming problems in an attempt to personally come to grips with them.
If you are supporting a transplant patient, it is important for you to recognize the type of attention they need. Do you send a card, make a phone call or drop in once a week? It depends on your personal relationship with that person and the "vibes" you get when talking to them. I know that when I was undergoing a transplant, I was very uptight when people I didn't know came in to visit. I know they thought they were just trying to cheer up a sick guy, but when I meet somebody for the first time I'd rather not be sick, hairless and 25 pounds underweight.
However, this did not bother me when the visitors were family or close friends. I just happened to be a patient who preferred visitors that I knew very well. So before you drop by with a smile and a big bouquet of balloons, make sure that you know it's something the patient wants. If a phone call seems more appropriate, then call. Let the patient dictate the course of the conversation. That way, whatever you discuss, you're sure it's something that you know the patient feels comfortable with. Funny greeting cards and gifts are a great idea too. I can't tell you how much a good laugh lifts the weight of dark clouds when you are a patient.
Regardless of how you choose to communicate with the BMT patient, the important part is that you do communicate. The worst thing you can do is let your own fears and confusion about aplastic anemia dissuade you from letting that person know you're thinking about them. Even the most hardened "denial" patient will, at the very least, privately acknowledge your interest.
BMT patients are not only battling a horrible disease, they are in a constant struggle to control fear, depression and loneliness. The thought of "Am I going to make it?" looms like a pitch black cloud, and it's there every single day. But with your help and communication, you can burn a hole through that cloud and maybe let a little sun in.
National Marrow Donor Program............................................(800) 526-7809
BMT Newsletter: .................................................................(708) 831-1913
BMT Link: ..........................................................................(800) 546-5268