Coming to Terms with Needing a Wheelchair

Question: Recently, I’ve noticed that both my polio leg and my “good” leg have been getting weaker. It’s getting harder and harder to go even short distances (from room to room in my house, for example). I’ve used a cane in the past and, more recently, a walker. My doctor wants me to use a motorized wheelchair, and my children agree this would be a good idea. There is no way I’ll agree to this! I feel like this is a point-of-no-return. I feel like if I choose to go into a chair, I’ll be embarking on the beginning of the end. I just picture all those movies and TV shows where these sad, old people are parked in front of the TV and essentially forgotten. I know this sounds silly. I’ve heard all the arguments about how it will be safer for me and give me more mobility, but I just can’t get past my aversion to wheelchairs. I worked hard to recover from polio, and it feels like I’m admitting defeat.

Response from Rhoda Olkin, PhD: Of course you don’t want to use a wheelchair. You spent all your life trying not to use a wheelchair. A wheelchair seems like a mark of a serious decline, many more of which will follow. No one can tell you to use a wheelchair, not even your kids.

But you need to use a wheelchair.

So now that we got that out of the way, let me explain. Most importantly, using a wheelchair is not the beginning of the end, but the beginning of a new beginning. This would be a beginning where you could go from room to room without having to think about it; where you could be less fatigued and do more; where you could go to movies and museums and big box stores, even on rainy, slippery, days; where you could cook and do laundry and other quotidian chores without that being your entire energy allotment for the day.

Are there disadvantages to using a wheelchair? Oh, let me count the ways! Insurance is likely to pay for a portion of the wheelchair but not for any means of transporting it. You may need some modifications in the house. You may get patted on the head. Some people may talk down to you. Someone younger than you will call you “honey” or “sweetie.” The wheelchair needs upkeep and repairs, as does any lift on the car.

I know you are averse to what I am saying. I really do get it. Let me suggest a way to try it out. Rent a small electric wheelchair or scooter for a month and use it in the house, out of sight of any witnesses. (A week is not long enough; you will fight it the whole first week.) See what it feels like, notice what you can and cannot do. You don’t have to tell anyone— this is only for you. Maybe keep notes each day, so that you are not so swamped with negative emotions that you do not notice the behavioral aspects.

Go by yourself to a grocery store or a big box store that has a scooter, and use it in the store. Again, note what the experience is like both emotionally and physically. (Be sure not to buy more than you can handle when you get home—it is easy to load up a scooter basket, but my guess is you won’t have wheelchair access from your car to the kitchen.) I am trying to move you from comparative values (wheelchairs are less valuable than legs for ambulation) to intrinsic values (wheelchairs allow mobility). Probably right now every fiber of your being is resisting what I am saying. Just know that I am saying all this as someone who went from being ambulatory unaided, to using crutches, to a scooter, to a wheelchair for distance, to a wheelchair in and outside the house, i.e., everywhere. Please seek a knowledgeable professional therapist who can help you make this tough transition.

Response from Stephanie T. Machell, PsyD: This column is directed to your children, but I hope you’ll appreciate it too. At the age of 87, my dad finally agreed to have a power wheelchair evaluation. Of course, he qualified. The next time I visited, there was no wheelchair. Why not? “It will make me look old,” he replied. Because I got my sense of humor from him he laughed when I replied, “Dad, that ship has sailed.”

He kept walking and falling for the next two years, until a few weeks before he died. Had he not cancelled it, the wheelchair would have become a place to hang jackets. Or he might have donated it to charity as he did with his braces.

Your dad sounds a lot like mine, and every other polio survivor I’ve ever known who was told he or she should be using a power wheelchair. All of them feared what this implied, because for them victory over polio meant walking. This made sense in the inaccessible world they were being rehabbed into, where a wheelchair was more than a symbol of dependence and defeat.

Their hard-won ability to walk became part of their identity. It’s difficult for someone whose sense of self turns on “Use it or lose it” to accept the need to “Conserve it to preserve it.” But it’s not impossible.

Every polio survivor I’ve known who decided to use a power chair has told me they wish they’d done it sooner, because the benefits they gained were substantial. So, what were these benefits, and how might you use them to help your dad replace his belief that he would be “confined to a wheelchair” with the more accurate “confined without a wheelchair?”

Power chairs extend the user’s range, allowing trips to places your dad may have avoided as well as making it easier to navigate his own home. Rather than keeping him from walking, the rest it provides for overused muscles may well improve his ability to walk when he wants or needs to do so. Walking less reduces overuse pain and fatigue, greatly improving quality of life, as does reducing the risk of falling and breaking a polio limb.

Legs and walking may seem to be what independence is all about. In reality, well functioning arms and shoulders are more important in daily life. Though walkers are easier on arms than canes or crutches, using a power chair can offer better protection from overuse.

Tell him all this, including how much you worry about his well-being. But most likely he gave you this column and has already read it himself. So give him a kiss and/or hug and say, “It’s your decision, Dad. Now that I’ve read the column, I know it’s a big one, but I trust you to make the right one for yourself.”

He may still refuse. Or get the chair and use it as a coat rack. Remember, reinventing yourself takes time.

Post-Polio Health (Vol. 34, No. 1, Winter 2018)