Polio Place

Post-Polio Health, (Volume 31, Number 3) Summer 2015

Dr. Rhoda Olkin is a Distinguished Professor of Clinical Psychology at the California School of Professional Psychology in San Francisco, as well as the Executive Director of the Institute on Disability and Health Psychology. 

She is a polio survivor and single mother of two grown children.

QUESTION: I worked so hard to walk again after acute polio. I have extreme pain in my hip in my weaker leg and since I had a knee replaced, my back pain when standing is also extreme. I use a cane sometimes and I know I should use a scooter or a wheelchair, but I just can’t overcome that horrible feeling of being a failure if I do. Besides that I have gained weight and if I don’t move some, I will gain even more. Help!

Response from Rhoda Olkin, PhD: Ohhhh, been there! I have pain in my knee area, my back hurts, I can’t stand for more than a minute, and I spent my formative years doing everything possible to remain ambulatory. Now I use a wheelchair or scooter 90% of the time, crutches the remaining 10%, starting about 10 years ago. My weight gain has been alarming, and I no longer see in the mirror the person I think I am from the inside (who seems to be much younger, cuter, thinner and with great hair!). But I do not see a failure, only flaws that I can address. The flaws do not include the fact that I use a wheelchair, because doing so got me my life back. Pain and limited ambulation were forcing a reduction in activities that narrowed my world.

We get so many messages from everywhere about how walking is good and how the need for any sort of assistive devices is bad. Consider the language often used: “Wheelchair bound” (with the emphasis on the inability to get out of the wheelchair), “non-ambulatory” (not able to walk), “suffers from polio”
(as if that’s all you are). What if we said “uses a wheelchair” and “fully mobile” (by whatever means!) instead? A wheelchair is not a failure, but a window into a wider world of options. Imagine you lived in a poor country with no access to wheelchairs. In such circumstances people devise their own sets of wheels, and getting a real wheelchair would not represent failure, but wings to fly.

Try an experiment. Go to a big store that has a scooter for customers to use. Do not use it. Go up and down each aisle. Note your level of fatigue and pain. Now go on another day and use the scooter, again going up and down each aisle, and again noting your level of fatigue and pain. What do the results tell you?

Okay, I’m not going to gloss over the significance of using a wheelchair. First, using a wheelchair often means less overall body movement, which can lead to secondary conditions (weight gain, decubitus ulcers, lassitude of some muscles). You have to be careful to avoid these. Since you can walk, do so a bit, or get on the floor and move/exercise, or do chair exercises. (Once a day I walk with crutches from my office to the bathroom and back, a total of 100 steps. I notice I feel better when I do this.) Second, it’s a change in body image. People everywhere start reacting to you differently, and that feedback forces some recalibration of the self. Third, it can be harder to maintain or lose weight. Make sure you don’t have another condition (hypothyroid, sleep apnea) and then find a balance in intake and output that you can live with. And when you do, write me, so I can use it as well!

Do not let anyone – family, friends, doctors, rehabilitation specialists, physical therapists – lead you to believe using a wheelchair represents failure. It is an alternate means of mobility and does not change the fundamental you.