One of the greatest challenges I’ve faced, in dealing with a chronic illness, is accepting that, sometimes, I need to ask for help. For my entire nursing career, I was the one giving and doing for others, and now I’m learning to step aside and letting others do for me.
It’s hard giving up, not only my independence, but the control that goes with it.
A number of years ago I bought a cane, when my balance became an issue. It didn’t leave the car. I’m stubborn, and didn’t want to give in to my disease, until…. The following is an essay I wrote that clarified the issue for me.
Writing everything down after this ‘fall’ gave me better understanding, but like I said, I’m stubborn. It was awhile after the incident below that I finally gave in, or got smart, whichever way you want to look at it, and actually took the cane out of the car.
A STORY OF CANE AND ABLE
I could feel the heat of the summer sun. It seemed to drain my energy with every step. I needed to concentrate; left, right, left, right...to concentrate on walking, as if my legs and feet wouldn't know what to do if I didn't cue them.
One block, only one more block. I was wandering all over the sidewalk. Only if I ran my hand along the store fronts could I stay relatively straight. When it became more crowded I'd stop and look in the store windows. I didn't want to bump into anyone or have anyone bump into me and knock me off balance.
Finally, the bank. Standing at the teller's counter, I could feel her watching me. I must have looked rough as she asked if I was alright. I needed to get home, to get out of the heat and rest.
I cut through the back parking lot to get to my car. I was hot and sweaty, my vision blurred, my legs weak and uncoordinated.
“Damn speed bump!”. I hadn't been going fast at all and the speed bump stopped me flat. I tripped and fell hard, road burns to my hands and knees, and the pain, pain in my knees, pain in my shoulder and pain in my hands. I was so self conscious and embarrassed. With my already 'bad' knee I had difficulty getting up from the ground without a chair or some kind of support, and there I was, weak and injured, sitting in a wide open parking lot.
Very quickly there were strangers around me, those people who'd seen me fall and those whose curiosity had drawn them near. It was difficult getting up, even with the help of others.
Go away! Go away and leave me alone! Help me!
One kind soul seemed to sense my discomfort and led me to her car. She drove me to where my car was parked and saved me further embarrassment and discomfort. I had overdone it. Walked too long, too far and on a day that was too hot.
Had I used my cane would I have been better able to walk straight, without so much energy spent in maintaining my balance? I've had the cane but it has never been taken out of the car. I feel awkward with it, but would I look as awkward with it, as I looked staggering along without it?
How did I look? Did onlookers think I was inebriated? Did shop owners think I was loitering with the intention to steal? If I'd had the cane would someone have held the door for me, or given me space so as not to unbalance me?
As my Multiple Sclerosis is basically invisible I feel the use of the cane draws attention to me. I've learned to use whatever is available to help maintain my balance and to walk a straight path. I use walls, store displays, benches, whatever is handy. I use shopping carts like they’re a walker, for support so I can walk farther and longer. With a cart I can rest momentarily by leaning on it and so reduce my fatigue.
With the cart I can walk a straight line. I am protected because the space immediately behind the cart is 'my' space. I don't get caught up in the crowd, subject to other people's movement that might require a responding move on my part. I can't move suddenly or quickly and maintain balance. I tend to avoid crowds where I might be jostled, especially if I have no hand hold to steady me.
Over the last few years I have subconsciously changed my shopping habits and now rarely shop where there is no cart available. I rarely go to the mall to shop and though I miss the variety, the wide open walkways and the crowds intimidate me.
I avoid downtown for the similar reasons. The sidewalks are crowded and not as wide as the walk ways at the mall. If I want a store across the street it's more walking, to cross at the intersection, as jaywalking is dangerous, on the chance I might have to suddenly hurry to avoid traffic.
And then there's the parking. At both the mall and downtown the walk to the actual shopping area can be long enough to be fatiguing, and I've avoided getting a handicap parking permit the same way I've avoided the cane. At least in a plaza setting I can park close to the store I want and avoid the long walks and crowds of the mall or downtown. My steps are hesitant and irregular especially over uneven surfaces. I have an increased sense of vulnerability and a fear of falling. Large chain stores that offer a variety of goods and services are my salvation. I can do most of my shopping with one stop.
My fear of giving in to the cane is just denial. I'm avoiding the truth, that on some days, I need some assistance. The cane is a common sense tool. I've not shown a lot of common sense in my stubborn refusal to make use of something that could benefit me.
What is that quote, something about pride going before a fall? It's time to make a necessary adjustment and adapt to a new way of doing things. The cane doesn't have to be an always thing but I need to admit that, on some days, I need the help. This way I won't push myself doing too much and paying for it later.
A quick trip to the store in the morning, when I'm rested, may be managed independently. On an afternoon when I'm tired, I'd be glad of the support. It's a matter of knowing me and knowing my limitations.
I have to go out and do some errands. As its late afternoon I'll miss my nap and I'll be tired. So it's a perfect day to take the cane out of storage. Maybe I'll even venture out to the Department of Motor Vehicles and check into a Handicap Parking Permit.
* * *
In update, I did get the Handicapped Parking Permit, and used it cautiously, the cane stayed in the car.
One day a friend and I went to a cottage country outdoor art show. Parking was quite a distance away, and she suggested I park in the handicapped parking, right near the entrance. I started to pull into the parking lot and was stopped at the gate by a volunteer. Even when I showed him my permit, he looked skeptical.
And why not? We were two middle aged women, in apparent good health, laughing and enjoying our day. By all appearances, my illness wasn’t overt, nor was my friend’s asthma, which would have made walking a long distance difficult.
We could see the man watching as we parked. I flippantly said “I’ll limp and make it look good”.
She answered “Use your cane”.
And so I did.
I think one reason I hesitated to use the cane was the public declaration it made. I was not perfect, (like that had ever really been my reality, but you know what I mean), I had an illness.
This was my public persona, and my public persona was presenting as a person…with a disability.
I think using the cane when out and about, away from home, eased me into it. Part of my reluctance was that it felt awkward; trying to manage cane, purse and whatever else I might need to carry.
I had one more excursion, to the St Jacob’s Farmers’ Market, where I used the cane and found it invaluable.
I discovered something important on those days. People are considerate of the cane, doors are held open, no one rushed me, and crowds gave me space. My biggest fear in a crowd is getting knocked off balance and falling. You know…the ‘I’ve fallen and I can’t get up’ syndrome.
I became comfortable with the cane so by the time I was using around home I was prepared. When I met people I knew, who had never seen me with the cane, their first question was always “What’s with the cane?” They were expecting an easy answer, like I sprained my knee or something, and were understanding when I explained.
I’ve conquered the cane; or ‘the stick’ as my grandson calls it, and am now faced with another challenge. The walker. Walkers are steadier, more like the shopping carts at the store, and they have a built in seat should I get tired and need to rest.
I know I should get one, and I will. I’ll probably store it in the car until I’m ready.