alysten: (PandaWhale)
[personal profile] alysten

I figure I should just explain why shoes and I don't get along. Not that anyone should care, but I will explain anyway.

I have a neuromuscular disease, called CMT (Charcot-Marie-Tooth).  It is the most common of the "rare diseases" which effect motor and sensory function, 125,000 cases in the US. It is caused by the demyelization of the nerves. Since the myelin sheath is what conducts the signals, the nerve can no longer send the correct signals to the muscles. And the nerves that stimulate movement are the most severely effected.  It starts in the feet and legs, and can progress into the hands and arms. There is no cure. And I have had it all of my life.

My disease has progressed to the point where it effects my feet, legs, hands and sometimes my lower arms.  I have had 5 corrective foot surgeries, which have taken almost 4 years to recover from. I have gained stability and balance and a bit more time.  My bones in my foot had elongated to the point where I was going to start getting random stress fractures. All of my toes are fused straight. I have 2 screws in each foot.  I have had 12 different tendons lengthened.  I have had most of my rt. planar fascia removed.

I forget how to walk.  Walking is not an automatic thing for me. I have to remember to pick my feet up off the ground and put them down in front of me.  Very much like Winter Warlock in "santa claus is coming to town", I put one foot in front of the other...  If I am very tired, and I have taken my drugs, you may notice, that toddle like a panda. You will probably also see my slap my foot down as I step and that I start walking with a pronounced "V".

If I am at an SCA event, you will see my shoes. Either I have my skirts hiked up, or the cut of the gown is such that it comes up to my ankle. It is a rare dress that goes all the way to the ground and usually I will wear a hoop so that I have free foot movement.  I can bow to the crown, but I cannot kneel. I am just beginning to figure out how to get up off the ground. It usually requires a solid surface and non-skirt restricted movement. And it is anything but graceful. I mean no disrespect, but will not be kneeling before any crowns anytime soon.

This brings me to shoes. My SCA shoes are not period and I don't care. I cannot wear those yet. I can barely wear normal shoes. I have 2 pair of shoes I can wear for more than 8 hours and they are skateboarding sneakers (specifically vans). And I am finding I have a devil of a time trying to find shoes that will work.

Normal shoes have to pass a "bend test".  This means if you take the heel and toe, and bend them up, they have to have little to no bend in them. The soles need to be stiff and relatively flat. I cannot wear anything greater than an 1" heel. I need a wider than average toe box, but not a wide shoe. If a shoe is too wide, then my toes slide forward into the toe box. I have five "funny bones" at the end of each foot (each toe is fused straight). Imagine hitting your funny bone all day long, just from walking. Now multiply it by 10. Straps cannot cut across the 6" scar line across the top of each foot. And cannot push the right foot flat, as that will hit the 5" scar across the sole. Mary Jane shoes, with the cutouts to the toe, cannot be cut too far down the foot, or it puts pressure across the scar lines on the top of each toe. A shoe must have a wide enough mouth for me to bend my foot into.  My toes don't flex to make it into the shoe.

That is the short list. Every person's journey with CMT is different. My doctor knew what he was looking for, as he had treated my mother. I grew up knowing what I had. I also had a great support system, who always pushed me to do my best. I try to not let CMT stop me from anything I want to do. I may have a hard time opening a jar or working a zipper, but that never stops me from giving it a go. I can be stubborn. I never want to admit that I have a handicap, that I am somehow less than anyone else.  The drugs help, moving helps, and a bit of stubborn helps.

For a visual understanding here is a pic of what exactly they did to each foot, taken 1 week after they removed 1 pin in the big toe.


Date: 2013-06-04 06:03 pm (UTC)
From: [identity profile]

I just can't understand the people who bitch about your shoes. They are bereft of empathy.

You don't get to making that level of garb without figuring out that you should also have period shoes and accessories. If I didn't know you at all, the fact that you aren't wearing them would tell me that you have a Damned Good Reason. And I'd never ask for a justification for it.

"My shoes?"

Date: 2013-06-04 06:43 pm (UTC)
From: [identity profile]
"Why, thank you for pointing out how not period they are! I shall rush home directly and change them into something more pleasing to you. And that is such a lovely wristwatch that goes so well with your blinking bluetooth earpiece, which matches so finely with the sparkly frames of your eyeglasses!"

Or, if that's too much to remember, try saying "Fuck off, dickweed"

Hmm...guess I'm in a mood today :-\

Re: "My shoes?"

Date: 2013-06-05 02:20 pm (UTC)
From: [identity profile]
It is possible we both are. I got new shoes that I thought would work really well. I was disappointed that they will not. I am trying to see if they can be modified to fix the hard toe box insert.

I was more disappointed in the next round of helpful suggestions to fix my shoe problem. It is right up there with let us help you fix your depression/other chronic illness.Folks mean well, but don't understand. I figure I would help illuminate the problem better for them.

Re: "My shoes?"

Date: 2013-06-05 03:53 pm (UTC)
From: [identity profile]
I hear ya about shoes. Bought a pair of Merrill's on EVERYBODY's recommendation of how awesome they are.

The effin' things are part of what began my plantar fascitis woes since they stressed my right heel :-(

$100 white elephant...

Re: "My shoes?"

Date: 2013-06-05 05:04 pm (UTC)
From: [identity profile]
I couldn't wear those before I "fixed" my feet.

Date: 2013-06-05 12:53 am (UTC)
From: [identity profile]
Cow tongue slippers

Big opening, wider in the toe are as a style.

And late period German. Something that might fit your persona even!

But until you find a great pair, wear what you will and let the critics hang.

Date: 2013-06-05 02:14 pm (UTC)
From: [identity profile]
I ordered these

It's nearly perfect, except for the hard toe box insert that was added. If they were just the black leather, they would have been great.

Date: 2013-06-05 01:10 pm (UTC)
From: [identity profile]
As someone else who has a shoe/fit issue, thank you. Mine is not as bad as yours is, but due to the lack of mobility in my ankle and the 6" scar, I have a hard time buying shoes as well. If the edge of the shoe rubs against the scar,even 11 years after surgery, it hurts.

I busted my ass during PT to walk without a limp. Some days I still find myself limping. Some days I would be better using a cane, but I refuse. Call me stubborn, we all know I am. :)
Edited Date: 2013-06-05 01:13 pm (UTC)

Date: 2013-06-05 02:15 pm (UTC)
From: [identity profile]
I've started using my cane more regularly, especially on uneven ground. Mostly as a precaution.

Date: 2013-06-05 07:37 pm (UTC)
From: [identity profile]
You might want to consider making the cane a permanent part of your SCA wardrobe -- it can serve as a walking advertisement of "foot issues!" and perhaps lead people to think before they speak.

I wonder if we're not just best off finding a way to dye/color the modern shoes that *do* work for you. Hmmm.

Date: 2013-06-05 08:05 pm (UTC)
From: [identity profile]
I was just mentioning today that a period type walking stick would be very Tross and keep me stable at the same time.

Date: 2013-06-05 08:05 pm (UTC)
From: [identity profile]
And the next step in the shoe process is to see how I do with Birks.

May 2015


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