Living With Polio
Making the Most of Time
It all depends on your disability, of course, but most of us probably pay out more money, and most likely more time and energy, to manage our daily routines than non-disabled people.
For example, even with health insurance, I shell out a steady flow of funds for wheelchair repairs, other orthopedic equipment and ventilator supplies.
All those costs are only the beginning. I spend a lot of energy (my tank seems to empty faster these days) and time on my own disability to shore up my independence. For instance, it takes me two to three hours to get up and moving in the morning.
The alarm rings at 6:30 a.m. usually, and I begin my routine. Fortunately, with the assistance of my wife, also a polio person, I am able during this time to drink a cup of coffee, read my local newspaper and listen to NPR. After unhooking my BiPAP machine, I haul myself on to my bedside commode for an extended period – this is essential for me because once I get into my power chair and dress myself only the direst emergency can get me back to bed before nighttime. It’s just too hard to do. Before I retired from a job that required me to be at my desk by 9 a.m., I got up even earlier and was much more focused, urgent and stressed in my routine; nowadays I am more leisurely and gladly spend – and even relish – this time.
We try as much as possible to keep up our house ourselves. Cooking, doing dishes, policing the clutter that inevitably accumulates; all get done even if we spend more time and energy doing these jobs than other people.
Some jobs, though, are beyond us. Changing light bulbs in ceiling lights, batteries in beeping smoke detectors, doing laundry, cleaning the bathroom, cutting the grass are some of the chores for which we have enlisted help.
Sometimes that takes more time (time, again!) than expected. We have eaten dinner by candlelight on several occasions when the bulb blew as the mac and cheese floated in from the kitchen. If only we could time it so that the bulb would go out when we have dinner guests, guests that is, who were able to change the bulb, not always the case in the circles we roll in.
Happily, we have neighbors willing to help take care of many of these often annoying little household crises. And we are able to pay a housekeeper once a week and a garden man twice a month.
But, we have often felt in the past that our neighborly help tasted like charity. People helped us, and we were truly grateful. However, it was a one-way relationship and that bothered us. Over time we have developed an exchange system, largely unstated, that opens the way for us to help our neighbors, too.
We have writing, advocacy, office and computer skills that we have used to help our non-computer using neighbors (yes, there are people like that out there) find information they need.
We have a van that we help car-less neighbors go shopping or to appointments, and rescue friends with disabilities whose wheelchair vans have broken down.
Lately, we have become aware of a movement called “time banking,” wherein people donate an hour or more of time to assist another person, and in return, they can claim an equal amount of time for help from someone else.
Time banks are a kind of intentional community, which can be its own social reward. Time banks can be centered in a local area, or spread more widely if mobility is not a critical issue.
Have you had experience with time banking or other ways of exchanging, saving or stretching time – on the deficit or surplus side?
I would like to hear about it. Let’s share, and we can all get more high quality time and help others as well. That’s time well spent.
Bill Stothers is a long time editor and consultant on media and disability policy. He edited Mainstream, a national advocacy and lifestyle magazine for people with disabilities and major newspapers in Toronto and San Diego. He is a member of the Board of Directors of Post-Polio Health International and currently serves as its Chair.
Response: I was fortunate to regain a good life after contracting polio in 1952 and lived a normal life until 2004. But, post-polio has hit with a vengeance, but still blessed because many are much worse. I had bulbar polio which now has wiped out my ability to be understood. I have lost my balance in my right ear, thus needing a walk or scooter when my legs give out. I have 50% lung capacity, restricted swallowing and vocals. I do most of my eating through a feeding tube. I tell you all this to let you know the level of my need. Still I live alone and can manage my personal needs, but I also pay for help to clean my house and take care of the yard. I also look for fundraisers that donate time for contributions to get special projects done – I can always use the tax right-off. A type of time bank since my ability to give time is very limited.
Your article on time banking intrigued me, not just for disabled needs, but for connections in times of disasters. There are times I feel isolated, especially when not feeling well. My closest family member is 20 minutes away. I do have kind neighbors that have helped out in urgent situations. My property is on a slope and I’ve twice tipped over my scooter in the yard. I was fortunate that both times a neighbor saw me and came running. This isn’t a true time bank, but I always write a nice thank you note with cookies for their help. I don’t feel obligated, just grateful.
Also, I carry a cell phone for safety reasons and I have neighbor’s phone numbers that have agreed to be of help when I have a need. I don’t take advantage of them, but it is a secure feeling to have them available. If I fall, I am not strong enough to get up and they have been there for me a few times.