Polio Place

From the series, Polio Survivors Ask, by Nancy Baldwin Carter, B.A, M.Ed.Psych, from Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association.

Q: Every now and then I get a feeling of sadness over losses that I associate with my aging with polio.

I was never taught to acknowledge my polio emotions, and that left me with a lump in my voiceless throat. Deep down, I think I should not express these feelings that make me feel so vulnerable. If I do, I am concerned I will be judged for expressing my feelings. How can I move through this?

A: No doubt we all feel hesitant about revealing our innermost selves to others in the beginning. There’s that fear. Fear that someone will make fun of us, fear that our feelings will be trivialized, fear that people will think we’re complaining, think we’re whiners, that we’re not tough enough. Whatever. It’s a vulnerable spot to be in—must I always take a deep breath when I open myself up honestly, fearful that others will leap in to crush me?

Fears. They can be mighty. Yet, what are the consequences of silence?

Oddly, the more I stifle myself with these fears, the more I believe they are true. Soon I have stuffed myself so full of pent-up emotion that I explode in bitterness or anger or sadness or some other expression of a person I do not want to be. I’ve decided this isn’t the way I want to live.

Much of my fear had to do with being all wrapped up in how I was viewed by others. Then one day I heard a wonderful speaker who brought me down to earth with humor: “We wouldn’t worry so much about what others think of us if we realized how seldom they do.”

Suddenly I understood this wasn’t about them at all—it was totally about me. Thank goodness for that—I can actually do something about me.

First up: take a look. Over time, I had lost track of my identity. I wasn’t sure who I was anymore. I started searching.

What I discovered was a person who had spent a lifetime rationalizing my physical losses, pretending they meant nothing. I stayed home rather than admit I needed a chair. I even delayed getting SSDI until my time nearly ran out because I couldn’t face that my considerable losses were enough to qualify me.

My days had been spent “doing.” As my ability to do diminished, I felt myself slowly disappearing, tiny pieces of physical ability falling irretrievably to the wayside until very little was left. It was time to base my perception of my Self on being. I grieved the loss. I loved that other person—the whirlwind of her life, the accomplishment, the fun. I had to learn to appreciate the merits of being. This has to be about who I am, not who I wish I were.

I wasn’t sure how I was supposed to act about my disability. My parents never mentioned it and seemed to think it would be better if I didn’t. However, I needed to acknowledge it. I learned that while it usually isn’t helpful to sally forth with a long catalog of my aches and pains, I do need to talk about what it does to me inside to be the person I am.

Post-polio support group discussions can be great for this, as are loved ones and trusted friends. The important thing for me is to express myself. I become stronger each time I speak up. More free.

Not every day is perfect. And of course nobody has everything. But I discovered that what I have is plenty. I take it one day at a time, and I’m still here, still intact, and still purring contentedly.

Source: Post-Polio Health International (www.post-polio.org)