Saturday, October 25, 2008

Illness can make you super-sensitive

I decided that it was bad for my health to be on the computer late at night. It creates a buzz that makes it hard to sleep. It's difficult to put the computer away, because my new MacBook has a habit of following me around.

The other night, having succeeded in closing the computer, I reached for leftover sections of The New York Times and turned to Science Times from Tuesday. I should have just stayed in the blogosphere.

First I read a story about the wonders of blood. The writer, Natalie Angier, seemed to make light of the possibility of dying from blood disorders. I know I was being super-sensitive, but I got upset, and dashed off this letter to the Times:

"As a newspaper reporter myself (at a regional daily in Western Massachusetts) I understand the urge to write playfully about a serious or mundane topic that might seem dry otherwise. In her Basics piece about blood, Natalie Angier begins and ends with an attempt at humor that is upsetting for a blood cancer survivor like myself. I assume that anyone who has been treated for leukemia or lymphoma , or who is a hemophiliac, would react the same way if they read Angier's lead paragraph in which she writes that if you lose too much blood, "you must either get a transfusion or prepare to met your mortician," and her concluding line that, "Should a clot happen to cut off blood flow to a vital organ like the heart or brain, the only one playing the harp will be you." In the body of her story, she does a fine job describing the wonders of blood, about which I had already, unfortunately, learned way more than I ever needed to know when cancer afflicted mine. Angier should not have been flip when talking about the possibility of death faced by many with blood disorders."

At the paper, we often get complaints from people offended by one thing or another: short people, tall people, fat people, skinny people...we roll our eyes, saying you never know who you're going to offend next. I wonder if the Times editors are now rolling their eyes at me.

Next I turned to a piece about the new book by John Grogan, author of the book "Marley and Me." I had read "Marley and Me" in the hospital and really related to his story about a poorly-behaved, and lovable, labrador retriever. I was about half-way through reading about the new book when I came to the point where Grogan said he had been thinking about his father's death...from...leukemia. I didn't finish the story.

So much for a relaxing read before bed.

I get upset when I read about people dying from leukemia. Obviously I know it happens, but when it becomes personalized, it's extra-upsetting. It brings on the post-traumatic stress, big-time. I'm sure it happens to other people who've been through any number of things. Bang -- you read about it happening to someone else, and you feel more vulnerable.

My social worker, Mary Lou Hackett, had told me I'm not alone. When Susan Butcher, four time- Iditarod champion, died of leukemia in 2006 at age 51 (she relapsed post-transplant), I was hit especially hard. She said the news was on all the televisions in the Brigham and Women's Hospital floor where patients were being treated for leukemia, and the nurses told the patients to turn the TVs off.

Even writing that sets me off.

So what are you supposed to do? Try not to get "hijacked." Allow yourself to feel sad about what happened to someone else, and then try to remember that it did not (and hopefully will not) happen to you.

And then, go do something else.


Ann said...

It's so hard to know what to do. Like you, I'm sensitive to hearing or reading about blood disorders. The populace at large knows so little about blood cancers. I've run into it time and again and it's very frustrating.
Know you're amongst friends who share your feelings and worries too. As my friend Susan once said, "We're good at holding each other's hands."

Baby Bird said...

Chalk up one more similarity between us. I also just bought a new MacBook.

Are you familiar with Julie Davey's book, "Writing for Wellness?" There was a short article about her in the LA Times, so I emailed her and she recommended her book, as I contemplate writing my own. I have just started reading it, but am enjoying it.

Nelle said...

Having survived Hodgkins and my son having survived leukemia I got a knot in my stomach reading about that article. I also have an artificial heart valve now which means a blood clot would kill me so I take blood thinners. People can be so insensitive and I applaud you for writing to the paper and letting them see a different perspective other than the author's. I have had people say very insensitive things to me over the years. Only other cancer patients can understand the anxiety button that gets triggered.
I want a laptop but not sure I can navigate without windows.

susiegb said...

Well, I wish I had the similarity of a new MacBook I must say!! Just making do with an older Mac laptop!

It's 'funny' what you said about reading books that turn out to have a character who is dying/has died/has the same 'disease' that you have. As well as having NHL (in remission thank goodness) many years ago I was diagnosed with MS (although nothing much ever happened and I hardly think of it these days). But - this is a side comment, you would really think that having one of these diseases was enough, wouldn't you!!

Anyway, what I was going to say was, that as soon as I got diagnosed with MS, I couldn't walk anywhere without seeing huge posters (last year she was skiing, this year she's in a wheelchair)!! And so many books I picked up, turned out to have someone with it in them!! It was really strange.

I don't know that it's happened so much since I've had NHL. But I was really conscious of it with MS, especially in the first few years ... :)

Wendy S. Harpham, MD said...

I'm glad you wrote to Angier. I hope you can take some comfort in knowing her intention was surely not to hurt anyone. Hopefully she'll be grateful for your note.

From p253 of Happiness in a Storm:
"A special challenge to hope is your knowledge of another patient's current misfortune... Even if your disease is responding nicely to current therapy or you are enjoying a remission, learning tha things aren't going well for someone else may shake your hope, especially if that someone is going through similar medical challenges...It may break through to your rational understanding of the bad outcomes that are possible for you...You can imagine only too well what it is like to get bad news... (And) even if you are not too concerned about yourself, your empathy for the particular patient stirs general feelings such as sadness, anger, fear and vulnerability.

"Make an effort to distance yourself by focusing on specific differences between you and that patient. Separate your feelings of empathy for the other person from stirred-up feelings about you. If you can, turn your anxiety into heightened appreciation for how well you are doing."

Hope this helps a little. With hope,

Anonymous said...

Whatever your "buttons" ou've earned the right to protect them from being pushed.

With love and thoughts.


Anonymous said...

I must say ,I've been reading your blog every couple days. I just love how you put everything into perspective.You are one amazing,strong woman! Glad to hear that your getting stronger each & every day. As for Halloween candy. You go girl!!