We watched her drive away. Her scooter is bright red and she drives it like a pro. Tessa, our neighbour, has been part of our social circle since we moved to the city three years ago. We had been purposely put, by the superintendent of our building, in the apartment across the hall from her. To him it made sense to have the two tenants who needed mobility devices on the same floor. At the time I thought it was a bit like being ghettoized - but that seemed a bit over dramatic.
As it turned out, because we both got around on wheels, we did have much in common. Only others who have to negotiate curbs are able to have conversations about why the east side of Yonge Street is a better ride than the west side. Soon we were regulars at the tea places around our community. I'd dubbed the group, 'crips and flits' and that's kind of the attitude we developed.
Tessa was diagnosed with cancer some while back, but you'd never have known. When she lost her hair she got wigs of bright rainbow colours to wear. Sapphire Blue, Lemon Yellow, Whore Red, she stood out without standing up - a rare feat! Her cancer was never really stopped, even though slowed, by the treatment but Tessa never really was actually 'ill'. However, recently, it's become much more serious. Even so, Tessa is continuing to live life on her own terms. Tessa, herself, says that she's still living a life full of quality and fun - though things take a little more work.
Saturday we had tea together and then she was going for a several block drive on her scooter to pick up some special food for her cat. This is something she could have asked her friends to do for her, but then, why should she? She's not giving up what needn't be given away. But as I watched her drive away on her scooter, I knew that without her trusty steed she'd never be able to go and get what she needed.
I'm not sure that mobility devises get the respect that they are owed. Oh, they are from those of us who use them. But by those in the general public who see them as symbols of 'disability' and of 'confinement' don't get it. They really should stand and watch a woman, with a disability who is in the end stages of cancer, ride off into the life she still has. A life that she will have for as long as she can simply because she can carry on because she has something that carries her along.
Here's to mobility devises and the life they give, the freedom they offer and the dignity they make possible.
Not sure what I can add to that but "Hell YES!"
ReplyDeleteSharon
I so agree David, we are really lucky to have devices to assist with independant mobility. When my Mom was living with ALS it was very hard for her to lose abilities but with a cane, then a walker, and eventually a wheelchair, she was still out in the community as long as possible.
ReplyDeleteJennifer
Definitely! To our family, a good wheelchair is more interesting than a sports car. My kids make "fantasy wheelchairs" out of lego. We notice models and makes and cool features. I have to be careful, because sometimes I fear I come across as one of "those people" who stare rudely, but really, I am just lusting after the cool wheels.
ReplyDeleteHere, here!
ReplyDeleteThose wheels are the unsung heroes!
ReplyDeleteSo true Dave I have been trying to convince my mum of that for months but she is so resistant. It isnt even a drive for independence but she doesnt want to be identified as disabled. She would rather remain confined at home or the short distance she can walk from the car. She has that choice of course but it is such a terrible shame.
ReplyDeleteNeed + wheelchair = freedom!
ReplyDeleteWhy do some people find this so difficult to understand :(
And it's so irrational most people (though there are exceptions!)understand that:
short/long sightedness + glasses = freedom
hearing impairment + hearing aid = freedom
sight impairment + cane/guide dog = freedom
so why not the same attitude for wheelchairs, Grrr!
Yes!
ReplyDeletea) it was ghettoization, the kind Canadians excell at - choices decided for you because of how you are perceived.
ReplyDeleteb) I wish more people would realize that assistive devices are solutions, not last resorts (it would help if we weren't in a society or country that emphasized that)
c) "but you'd never have known." - What an incredibly sad statement - what was it, chemo, radiation or both? Chemo at least? And the tests? The operations? There is something horrible about the idea that pain, fear, vomiting, and degeneration is something one is praised for hiding.
Cancer eats her, and she is not the disease, but the disease and her cannot live apart either.
I get comments all the time about my hand painted works of art whch also happen to be pink sparkly forearm crutches with rainbow plaid on the bottom half and yellow www.3elove.com "wheelchair heart" symbols. fuzzy pink fleece crutch "cozies" which prevent my arms from painfully sticking to the boring grey medical grade plastic. Purple or zebra no-slip preform wrapped handholds depending on my mood. I like how making them individual and funky makes them less of a faux pas to talk about. I like that people comment how zippy fast I can go compared to them (and their boring workable legs hehehe)
ReplyDeleteI think it's funny how people who don't "get it" are so quick to be saddened that someone as young as me is "confined" to mobility aides. They don't get that I am actually freed by my mobility aides because I can leave my house for more than 10 minutes at a time without being worried about being too tired to get home or having balance issues and falling over!
I am super excited about getting a electric wheelchair or scooter so I can explore further and actually be able to go to the grocery stores in town which I can't get to at the moment on my own! So frustrating!
Cheers to wheels and feirce independence!
REformed girl
Elizabeth,
ReplyDelete'but you'd never have known' was a statement of fact, not a statement of praise. Cancer affects everyone differently - Tessa had radiation and lost her hair (and wore wonderfully wild wigs) but other than a very recent hospitalization and regular trips for treatment she just went on normally. She, for months and months, kept saying 'I just feel so damn healthy!' Her cancer progressed but in ways that didn't seem, until really recently to do anything but mess up her day with doctors and treatment. I do not honour 'invisibility' which you seem to accuse me of here. I simply describe her experience with cancer. You say in your comment 'There is something horrible about the idea that pain, fear, vomiting, and degeneration is something one is praised for hiding.' as if you know Tessa personally and know that she has experienced all these things - she hasn't. Give her the dignity to have her own personal journey with the disease, not one you seem to need to lay on her. Right now Tessa is across the hallway living out the last weeks or months of her life independantly, making tea, visiting friends and experiencing way more good days than bad and ... I'm sorry as it seems to offend you ... feeling pretty healthy most days.
Dave, I do not disagree with your statement that you 'never would have known'. But your exuberance over her wigs, her actions, her decisions are a celebration of a particular form of western approach to degeneration and illness. And I honestly believe that you never would have known. Many choose to present that face. And due to remissions, that is possible, for months, years and decades.
ReplyDeleteThe vomiting was a guess, due to the hair loss, which is usually a result of toxicity. But why so adament to admit that she has fear, or degeneration (even aging creates degeneration, while cancer altering us on a cellular level permanently does as well).
I am glad that she has good days. And I am glad that she lives them to the fullest. But the idealization of the cancer patient who steps from the film 'The Bucket List' or similar themes doesn't do any favors to anyone. I think every person who is end stage lives their life to the fullest. How can you say she has no fear, no pain, no degeneration and no bad days? You care give her? You are there over the nights? On the bad days? After the friends leave? It is sad that her whole experience with cancer is not presented. But then, probably only she knows that. And it can be completely healthy until it isn't. But when it isn't, it isn't, and that is just as much living to the fullest as making tea and visiting friends.
I agree, give her the personal dignity to have her own personal journey with cancer, instead of your interpretation of what that is, and what you lay upon her. I know a woman who partied for three straight years with cancer, and even off life support kept annoying the staff with demands for more parties for weeks. She was also lonely, in pain, and had an extremely high libido. She lived every day to the fullest, even the ones she cried on.
In dying slowly there is no neat bow, no wonderful 'lesson of the day'. There is just living as much as you can, facing the changes as they occur in different ways, getting what support exists, and going on, because that is what life in dying is, sprawled in many directions, with one voice to the person at the tea shop, another to the support group and another to the worker or relative there on both the good days and bad. And this kind of summing up and pulling the veil across (the radiation was like a spa treatment, no?) to create a single idea, is it a form of deception and stereotype. It is because I don't believe in Tessa as a stereotype that I know there is fear, and pain, and the rest of human emotions along with the ones you describe.