How To Cope When MS Steals One More Thing You Love

Lest you think this is a silly post about shoes, be advised, I am dead fucking serious.

I inherited my grandmother’s legs. My G was cool enough that we just called her G. She was self-aware enough to know her gams were her best feature. At 80, she was vain enough to insist on wearing a leg-revealing skirt and coat to an outdoor ceremony in the dead of a Montreal winter. I miss my G and her impractical dedication to fashion. 

It was in this reckless spirit that I decided to throw caution to the wind and wear high heels to a Christmas party. What’s the big deal, right? Let me remind you that my last post was about how I spent a week in a wheelchair. No wonder people don’t understand multiple sclerosis. I wish I could tell you my rise to heels was thanks in part to some impressive improvements in my balance, foot drop and leg strength. I don’t know what I was thinking. 

Yes I do. 

I was thinking, this hem line requires a heel. That’s math. And like my G before me I understood that sensible has no place in fashion. 

I know. I’m the worst. The heels thing sounds like so much bullshit. It’s shoes; an accessory. Don’t you have bigger problems?

Don’t you have MS?

Of course. Maybe that’s the cost of finding joy in small things. Sometimes small things can railroad you. But this doesn’t feel like a small thing. For me, heels represent femininity. Not for girls, this is the footwear of women. Practical and impractical, strong and sexy, they are a rite of passage; luxuries that are said to provide a sense of escapism in dire times. 

Are these not DIRE TIMES? 

Not to mention the power of the pump to say what mere words cannot. A stiletto can make an impressive entrance, but what about when you need to pivot on a dime, and storm out of the room with an angry staccato click-clack to reinforce an obviously justifiable rage?

Lumbering out in loafers is just so unsatisfying.

Before last Saturday, I can’t remember the last time I wore beautiful shoes. If I’d known they were going to collect so much dust in my closet I surely would have made more of an event of their last-ish appearance; drank champagne from them, or gone to sleep cradling them in my arms. My descent into flat, boring safety-shoes has been slow and insidious. I reluctantly started using a cane, while gradually sinking into a lower and lower heel. I told myself these modifications were temporary; that they were to get me through a long day. It was a desperate lie that I clung to; a way to stave off the inevitable grief.  

Of course the sum of my presence is greater than that which supports me, but it is not untrue that what we wear impacts how we carry ourselves, and at least in my experience this starts with what’s on my feet (the state of my hair coming in a close second). The addition of a bulky orthotic strapped to my leg and crammed into my boot has necessitated sizing up, so not only am I required to wear low, sexless shoes, my slender Grecian toes have been transformed into clumsy Shrek feet. And I just have to accept this gracefully? What?
Over the past several months I’ve been contemplating shoeicide giving away my shoe collection. If my legs get stronger my old shoes will be out of style and in need of replacement anyway, right? But the truth is I‘m afraid to get rid of them, because maybe they won’t come back. The high heel has become a measure of something more than vanity. It’s about ability, and that’s the real devastation. I’ve lost a few battles to MS already, and I’m pathetically unwilling to wave a flag of defeat on this one.

So on this night, I tentatively donned a pair of Fluevogs. Not outrageously high, but legit heels. I extended my cane so the length would support me on the left and had The Banker on my right. I walked slowly and with concentration, feeling tall and gratified. I didn’t have many steps to take. I didn’t drink as many candy cane martinis as I might have in flats. I spent most of the night perched on a chair, legs crossed and ready to receive compliments, surrounded by some of my most lovely friends who said nothing of my irresponsible choice but only ‘Oh my God, I love your shoes’. 

My G would have been proud.

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21 thoughts on “How To Cope When MS Steals One More Thing You Love

  1. As your mother, this post has me shedding a tear for you and for G. As a writer, it leaves me jealous of your ability to come up with clever words like shoeicide and perfect titles like Heel Me.

  2. I've been in my wheelchair full-time for about 3 years now. For a while, I wore only comfortable "appropriate" clothes and shoes. These days, I've regained my confidence. I wear ridiculous heels, which I could never have walked in at the best of times, and let me tell you: It feels great! When I wear them I feel sexy, and womanly, in a way that only heels can make you feel. (Also, you'd be amazed how many women envy me for being able to wear them…)

    For every battle against MS that I've lost, the things that remain have become more precious. I defend them ferociously! So yeah: I feel you. Keep going, you're doing great 🙂

  3. It's wonderful that you speak so eloquently about what the shoes mean to you. They're not just footwear. They represent so much more than that.
    Having danced in heels myself a few times I have a tiny idea of how good a sexy shoe can make you feel.

  4. Seconding D Ellis' comment – one of the advantages of being a full time wheelchair user is the ability to wear high heels, outrageous boots, and racy stockings (well, I guess you can wear racy stockings as while ambulating, too).

  5. As I starting having balance issues from the MS I quit wearing my favorite shoes. No one around me understood how difficult it was to give up the "good shoes". They just kept looking at me like "they are just shoes". They couldn't understand how different heels make a woman feel. It is not just for outward appearance, it is an internal feeling of beauty and power and "kick-ass" sex appeal. Thank you for explaining it so well. And thank you all for giving me hope that even if my wheelchair becomes full-time, I can still rock a great pair of heels!

  6. 'Kick-Ass' is exactly the feeling. Thanks for your note Sheri. I think it is important to recognize the power and importance of these seemingly trivial things and hang on.

  7. I totally relate to this. My walking in heels days are well and truly behind me now. I had one glorious period a few years back where I was doing better than I had been for years, I had several nights out where I not only managed to wear the heels, but I danced in them too! I can’t describe how good that felt.

    My plan for when these legs finally call time on holding me up and I use the wheelchair full time is that nothing less than a 3 inch heel is allowed near my feet. It’s the silver lining that will make the cloud a little more bearable.

  8. I absolutely LOVE your tone. It's not BS and honest. I loved this post. Diagnosed with MS a year ago, being 6'1" and (was) a chronic wearer of our loves, I UNDERSTAND! I finally found someone who understands—

  9. Hi Ashley,
    Thanks so much and I'm glad you found me.
    Thanks also for sharing your blog. I checked it out quickly and it looks awesome. I look forward to reading more!

  10. Elizabeth Neal

    I was looking for the actual reason why I can’t wear high heels so I can explain to my “literal thinking ” BF who has no clue why it’s a big deal and talks about it like it’s a choice!! With comments like “wear them next time” he hasn’t noticed in a year that I never wear heels.

    But then my friends don’t either with comments like “I know exactly what you mean! I can’t wear them either! Just wear sneakers! Who cares? No one will notice ”

    I beg to differ!!

  11. Love this post I realize I am not alone with this struggle of missing the one thing we love the most.

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