Why do survivors balk at rehab, lifestyle changes?

“25 percent do not change bad health habits after heart attack, stroke” – that’s the headline of a St. Louis Post-Dispatch article by Tara Kulash about a recent study published by the AMA regarding patients’ post-surgery behavior: http://www.stltoday.com/lifestyles/health-med-fit/percent-do-not-change-bad-health-habits-after-heart-attack/article_f30164af-2368-5cf5-8bdc-3f641a7607b8.html

I suspect that most rehab therapists would say that their patients are even worse at doing their rehab assignments.

At first I thought that this makes no sense. What mope[1] would have a stroke (or brain tumor or heart attack) and then ignore all the sound advice they’ve gotten about how to live a longer and healthier life by doing their rehab, or by rethinking that country-fried steak they’re about to shovel down their gullet?

This is rational thinking and, of course, nothing to do with how humans really think or act.

Instead, my thoughts drifted back to UMCOR’s[2] insights on the “four emotional tasks for survivors recovering from a disaster” because I believe that the emotional reaction to having had your house whacked by a hurricane isn’t all that dissimilar to having your brain whacked by a tumor. In both case you feel whacked. According to my UMCOR training the four post-disaster emotional states are:

1. Accept the reality of the situation (I can’t believe it happened).

2. Experience the pain (it’s okay to hurt).

3. Accept that a new situation is required

4. Withdrawing the emotional investment in the past and transferring it to the new.

When I think about these victims in that light, it seems to me that they haven’t accepted the reality of their illness; they haven’t accepted the fact that “a new situation is required”; and they haven’t made an emotional commitment to their new reality. So I now understand why a heart or stroke victim has not yet decided to stop smoking, start eating or to give up eating donuts for the rest of their lives.

Your thoughts?

John

Photo by David Carson, dcarson@post-dispatch.com

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[1] I use “mope” here in the non-denominational/non-gender Midwestern form of the word. Said differently, women can be mopes, too. Truthfully, though, in my experience most mopes are men. This study, to some degree, confirms that suspicion. Of course, you might just infer from this study that more men than women are pig-headed. Even though I am brain-damaged, I think I know enough by now not to take the wrong side of that argument.

[2] These stages are adapted from J. William Worden’s “Four Tasks of Grief Model” as described in the Grief Counseling and Grief Counseling and Grief Therapy: Handbook for the Mental Health Practitioner (Springer Publishing Company, 1991).

Hurricanes, Brain Tumors and Recovery

Last week I attend UMCOR’s[1] Disaster Response Academy.  The key reason for attending was to take another step towards being certified as a trainer of Early Response Team (“ERT”) members.  In case you’re interested, ERTs are the second wave into a natural disaster (e.g. a hurricane) area, i.e. the wave after first responders have made the area safe and secure, but before the general public is allowed into the area. 

In general, ERTs work on individual homes, after permission is given, and take steps to help prevent further damage to a family’s personal property.  Said differently, ERTs stabilize the homeowner’s situation but do not “fix” anything given the insurance ramifications.  This may include tarping a damaged roof to prevent further water damage, clearing debris so folks can get in and out of a house, and cleaning out (also called “mucking out”) flooded homes.

One of the classes I attended was basically “Disaster 101” although they called it something different.  In the class they described the emotional roller coaster ride that survivors go through following a natural disaster: some initial warning, an emotional dip when the disaster hits, an emotional bounce upwards when relief teams come and starts to help the survivors, a rapid and tumultuous dive into the dank, deep waters of real emotional pain and grief when reality sets in, and, hopefully, some upward recovery to acceptance and their “new normal.”

This is also a pretty good description of my emotions before, during and after my brain surgeries. In many ways, brain tumors are a disaster – physically, psychologically and spiritually. Emotionally, I didn’t hit bottom until after I got home and fell into a seemingly bottomless and unforgiving emotional hole. I wish I knew that I would hit bottom. I wish I knew that hitting bottom was natural. And that I wish I knew that, someday, I would be able to put my handicaps into perspective.

I think that knowledge, and some idea of where I was along the cycle, would have been of great comfort and use.

So if you know somebody who’s starting to be sucked into their own swirling brain tumor disaster, and are seemingly overwhelmed by gale force emotions, you might want to mention this to them.

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[1] United Methodist Committee on Relief