Once again time and circumstance have slowly come together and insisted on words. I know, I’ve surely spoken and written enough words for several lifetimes already, but here I go again.
It seems to me that all living things adapt constantly or don’t survive. Living things must adapt to weather, to availability of food, to good things, to bad things, to innumerable things.
We who are chronically ill are certainly not unusual in that respect. What may be unusual about us is that we agonize, beat ourselves up, and often tend to believe that we are somehow guilty, have some sort of character flaw, or have given up if we adapt to the changes our health brings before us.
Okay, I’ll stop using the royal “we” and refer to myself – it’s me, I admit it – I’m guilty of all of the above and then some; every single day. But, after 21+ years of this disease, I’ve been confronted in a new way with a basic truth.
How well, and in what ways, I adapt affects me, people close to me and even total strangers.
Now, as I said, I’ve been living with this thing for 21+ years. I’ve certainly adapted in many ways. Some are obvious; at the best of times I use a shower stool, a cane, and if I need to go to a big place, a wheelchair. None of those adaptations were easy when I first made them. None of them are easy today – especially that wheelchair.
I’ve adapted in ways that are not obvious, too. Not all of them are good.
Because I’ve had great difficulty standing unsupported for more than a very short time since the onset of this disease, I learned of necessity to adapt – hence the shower stool, cane and wheelchair. Sometimes I still went out to small places on my own, our little library or drug store, but when confronted with a line (queue), I became, then and now, quickly desperate to sit and have left the merchandise behind rather than sit on the floor drawing attention or risk meeting the tiles in an even more attention-getting way. Leaning hard on my cane, angled so I could rest back against it, was helpful only some of the time and never without a dramatic reduction in stamina. I gave myself credit for strength of will, though, oh boy – am I tough! And wasn’t that the most important thing – toughing it out? Applause, please, for the superwoman among us!
In the false pride of my so-called toughness, in the self-flagellation that did not come from truth, balance or any good thing, I did everyone a disservice, even strangers. I know this because of what happened when I began to see what I must do.
About a month ago, I was forced to face facts. I can’t do it. I can’t go even to a small place and not have a place to sit down. It’s not a case of wanting to sit – it’s need, and need it right now! I can no longer get away with leaning over a shopping cart, with self-talk to hold on for just another minute. I can walk – some of the time – what I can’t do is predict or plan. My ability to stand can change in the blink of an eye. Yet I want and need to walk when I can and I want freedom to do what I can on my own. I am, after all, tough! I am tough enough to accept reality…tough enough to adapt.
And so I obtained what will help me when the cane is not enough, the wheelchair is too much and what has, in turn, further opened my eyes, thanks to a stranger’s reaction.
More important than the “what” is the opening of my eyes. A stranger saw me using what I am calling The Gizmo. She gently asked if I get tired. I got nervous that she was going to ask more but when I said yes, she began to tell me how much she wishes her friend would use one, how much easier life would be for her friend and for all those who take care of her. She wasn’t asking in order to pry, she needed to talk about her friend – and I needed to hear!
Looking at The Gizmo rather longingly, she went on to say that her friend simply refuses to use “one of those.” Anyone watching this woman would have been able to see how she ached for her friend – for the loss of freedom her friend is enduring and for those who take on the extra duties she cannot perform because “she won’t use one of those.” Perhaps she’ll talk to her friend about it again, having heard me say that it has already brought back freedom I thought was gone forever. Perhaps my public use of it has helped someone other than myself and my husband. What a great gift to me, that thought!
We affect others, all of us, whether we are aware of it or not – whether it is seeing or simply allowing ourselves to be seen – adapting, living, continuing. We aren’t just adapting for ourselves!
When I acquired The Gizmo, I was unhappy at its original name, bright color, and the prominent sticker that could not be removed and proclaimed me “invalid.” I am neither invalid nor in-valid. I renamed it and covered that sticker with some that reflect things I enjoy. When I took the deep breath of courage and used it the world did not stop, staring and pointing, and I was able to enjoy a small outing as I have not done in many years.
And on top of it all, thanks to the blessing of a stranger’s wisdom, I have seen another way to be useful.
And so I present to you The Gizmo, personal helper, instrument of learning, and one of the colors of adapting.
Gaining freedom - gaining wisdom
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