Tuesday 1 May 2018

How to get the death look

I talked a little while ago about the neurological disease I live with. This incident happened not long after.
I had an appointment with the chiropractor who I have seen for about 5 or 6 years and who is aware of the disease. As I walked into the clinic he said "you are not walking real well"
I was really struggling on that day "no, I'm not"
"What happened?" he asked

at this moment I wondered what the hell he thought happened

"it's just the disease, it gets worse"

"well it's a lot worse"

To understate it just a bit, I don't much like having trouble with walking and I resented the statement of the obvious. "Are you stiff?" he says "you should do stretches"

I'm not stiff, I just can't walk well

"I have an appointment to get some braces, it should help me"

He says to me "you don't want those, or you will rely on them"

to which I answered "I already can't walk so I already kind of rely on them"

I don't mind educating people, even though it can be tedious or confronting but this ....well I will borrow a wonderful line I read recently ......this made my piss boil.

Nobody wants to need prosthetics or orthoses. Nobody wants the hassle of glasses or false teeth. Nobody wants to rely on a prosthetic leg or have a glass eye or use a wheel chair but for those who need these things, it can add to their quality of life. What the hell is the point of saying "you will rely on them"? Relying on them is exactly the point and you wouldn't ask a short sighted person to refrain from using glasses because they would rely on them.

I could write off his comment as ignorant or I could think of it as ableist. What I really think it is, is physically elitist.

Yesterday, my 47th birthday, I went for the first consultation on the road to getting my Ankle Foot Orthoses (AFOs).

The orthotist was lovely. One by one,  he outlined the issues he will be correcting and then he put on a trial pair of AFOs. Two of the issues immediately went away. He then asked me to try walking, which was scary so he gave me a walker. The walker was very helpful and I was able to build some confidence moving around his workshop.

What I am getting is like the carbon fibre prosthetic limbs used by somebody like (dare I say it) Oscar Pistorius except mine will still have my own legs in them. It will take some practice and some humility and some adjusting but I promise I will rely  on them.


23 comments:

  1. Sigh.
    Hooray for getting something which can make the issues go away/become more manageable. And for a lovely prosthetist.
    I am so over the physically elite who feel equipped to make judgements/give advice. And (forgive my crassness) I hope THEIR piss boils.

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    1. I guess it's confronting for people. It's more confronting for me, though!

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  2. Glad you are getting what you need to make movement easier. I would not give a fat rat's ass what anyone else thought about them!

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    1. I'll have them no matter what people think but I do wish some people would be more careful of what they say.

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  3. I am sorry to hear about your condition and disgusted at the insensitiveness of the chiropractor.

    For the past 38 years I have walked with a limp despite using a cane. I have been called derisive things in many Indian languages by people in a hurry who found my pace too slow. I have also had many people willing to let me precede them, or have offered seats or have offered to carry luggage etc for me and the latter have been more the case.

    You will find the same as days go by.

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    1. Thank you, Ramana.
      I do believe that most people are good and helpful. I must remember those people when the others annoy me!

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  4. I admire your approach. I hadn't heard the term 'physical elitism' but I recognise it well enough and I get very irritated by both that and negative attitudes. In a completely different way I have observed physical elitism from my own condition which is not observable and which most people do not know I have. So when comedians make jokes about it, or people talk about it disparagingly they do it without knowing the effect it can have. Fortunately I am old enough and ugly enough not to be personally concerned but I am very concerned for those who do feel ridiculed and for the effect it can have in deterring people from seeking medical help.

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    1. There are so many things we can say that have far reaching effects. I'm currently trying to divest myself of phrases like "have a fit" "have a heart attack" "psycho"
      I long ago banned "retard" and "spastic" as casual insults in my home

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  5. I would probably be looking for a new chiropractor post-haste! My experience (only mine) has been that there are good and bad in every occupation. Some people don't have the life experience or the natural empathy or SOMETHING that makes for a kind practitioner. Others do, and they are so much nicer to have in your corner.

    I'm glad your orthotist was kind and gave you the help and devices that will enable you to feel more secure.

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    1. I have thought a lot about my chiro. He is privileged in many ways and has blinkers on for some situations but he means well. My daughter will graduate in a couple more years and hopefully she will take me on as a patient!

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    2. Now that would be lovely, wouldn't it!

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  6. Happy 47th, Kylie. I suffer from a neological disease and it’s not nice. My sympathies are with you and with everything you go through. It’s hard to bear sometimes. I hate it when people become so judgemental and don’t understand what you have to go through. Trust me I understand how you feel. I’ve had to.

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    1. Your experiences of disability and prejudice and being patronised are worse than I will ever have to put up with Terry. I'm glad you are here

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  7. Good luck with your new "leg supports". I guess it'll take a while to get used to them, but once you do it'll make a big difference.

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  8. Grr..., I missed your birthday. My only excuse being that I didn't know when it was. Well, you old Spring Chicken, congratulations and may there be many more returns of the day - current life expectancy what it is you might double what you have bagged already.

    Good luck with the prosthetic limbs; from now on firmly anchored in my mind as Kylie's OPs - your fault since you brought up his name. Just remember that burglars are unlikely to shut themselves in a bathroom.

    U

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    1. I assumed I had your best wishes for my birthday and I was right! :)

      Many years ago I walked in on a burglar, he took off out the back door faster than I could think

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  9. I loved your expression "this made my piss boil". Coming from such a pleasant, kind and generally well-mannered woman, the expression was imbued with extra power. By the way, belated birthday greetings Kylie! And thanks for sharing your health troubles here.

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    1. Pleasant & kind is the image I cultivate but I can do a good "swears like a sailor"
      Thanks for the birthday greetings, next year you can gift me the secret Yorkshire pudding recipe :)

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  10. I get really sick of people who know nothing of my condition and suggest,"Why don't you just...whatever. The get the evil eye, death look, from me. That doctor feels comfortable saying cruel things in the guise of helping. He needs to go buy a filter for his face.

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    1. It's funny how so many people with no idea have "helpful" suggestions. I also dislike the way illness or disability often become a kind of moral issue, as if it could be got rid of by exercising or better diet.
      A filter for his face is a good way to say it!

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  11. How frustrating it must have been for you to listen to this man calmly point out what you ought to be doing, as if you wouldn't have come up with an easy solution if it was there to be had. Some people are so oblivious.

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