By Dr. Richard L. Bruno
There is no question that the biggest obstacle to treating post-polio syndrome (PPS) is polio survivors’ fear of change. From our 1995 International Post-Polio Survey, we know that polio survivors experienced 34% more physical abuse and 94% more emotional abuse as kids just because they looked disabled. As so many patients have said to me, “Why would I want to (insert any change in activity or use of any assistive device), look disabled and be abused and rejected again?”
So, the challenge in managing PPS is dealing with what’s going on from the neck up, more than the neck down. After nearly 30 years and treating thousands of people with disabilities, I’ve found some tips and techniques to help patients deal with their powerful feelings that can prevent a physical disability from becoming an emotional one.
When something life changing happens, like becoming disabled, people ften have trouble knowing what they feel, let alone being able to express their emotions. Sometimes, folks know what they feel but believe they are burdening their families and friends by talking about feelings. But, strong emotions don’t go away or remain hidden. Feelings make themselves known whether or not you’re aware of them or you want them to, often as irritability.
Irritability is not an emotion. If you are irritable-nasty as a rattlesnake, sniping at your spouse, and kicking the cat-there is a powerful emotion inside of you that’s trying to get out. Better to tell someone what you feel-or even say that you’re irritable but don’t know what you feel- than to be irritable. Looking for feelings underneath the irritability and talking about them not only helps you feel better, by bringing the feelings into the light where you can deal with them, but also helps your family, friends and pets feel less like they’re living near Mount Vesuvius.
Once you get beyond being irritable and know what you’re feeling, what do you do? Remember the “stages of acceptance” of dying: denial, anger, bargaining, depression, and acceptance? These stages have been applied to losses other than dying, including having a disability. The problem is that there are no neat “stages of acceptance” for dying or for disability. People don’t neatly move from denial, step by step, to acceptance. Some folk can go from a rehab hospital bed to acceptance, while others flip around from acceptance to denial and everything in between. What’s important is that we’re not forced to fit emotional stages, but are free to feel what we feel when we feel it.
We also shouldn’t accept labels for our emotions. Sadness, fear, helplessness and hopelessness are often all labeled as “depression” by doctors. Patients are given an antidepressant and sent on their way. It’s far better to work with a psychotherapist to deal with your specific feelings than to accept a label, take a pill and hope the feelings disappear. Depression is a medical illness and can be treated with antidepressants. But, when depression is gone, your feelings remain and still will have to be dealt with.
Back in the early 1970s, future MS’er Richard Pryor was pilloried for using profanity in his comedy. “Why does he have to use ‘four letter words’?” whined moral guardians across America?
Pryor used “four letter words” because he was describing 400 years of abuse. What was he supposed to say? “Oh darn, my great-great-grandfather was kidnapped and stuck in the hold of a slave ship and, shoot, he and his family were forced to pick cotton for generations, and heck, they were beaten and hanged for asking for basic civil rights?”
“Darn,” “shoot,” and “heck” didn’t do it for Pryor and they don’t do it for most people with disabilities. Having a disability sucks. If you’re lucky, you’ll learn from the experience and grow. But, I think people with disabilities, and especially their shrinks, should acknowledge that disability bites and say so.
I have found that one good “damn” is worth a thousand “darns.” Profanity vividly communicates pain and sadness while releasing frustration and anger. So, if my patients curse, I will curse right along. I sometime curse on my own to make a point or to help break a patient’s feelings lose. A well-placed “damn” or “hell” lets patients know that they that can feel and express anything they feel.
Dr. Richard L. Bruno is chairperson of the International Post-Polio Task Force and Director of The Post-Polio Institute and International Centre for Post-Polio Education and Research at Englewood (NJ) Hospital and Medical Center. His e-book, How to STOP Being Vampire Bait: Your Personal Stress Annihilation Program, is available from rbruno@unitedspinal.org.
