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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Sitters are Quitters and other lies

The Banker and I have just returned from a much needed beach vacay. I'm not on good terms with winter and if I’m gonna get through it, a healthy dose of Vitamin D (that D is for daiquiri) could be my saving grace. The morning we left saw a light dusting of snow and a scary patch of black ice en route to the airport. It was time to get the eff out of the 6ix.  

But, wait a second. Isn’t heat hard on MS?

Guys, everything is hard on MS. 

MS is like a buffet of four thousand individual diseases. MS related heat intolerance is called Uhthoff’s Syndrome. Sidebar: People who discover diseases and then name them after themselves. Is that the most messed up thing ever? I would have called this something like Magic Mind-fuck Syndrome (MMFS) or Let’s Also Ruin Sunshine’itis (LARS). Here’s the dumbed down version of how I understand it. Where there's existing damage/myelin loss, nerve conduction craps out when body temperature is elevated. Messages that may get through at normal temperatures can’t travel as efficiently when they’re all hot and bothered. As little as 0.5 degrees of increased body heat can impact nerve conduction and make you feel like you are relapsing. That means weather, showers, exercise and even having a fever can all wreak havoc. It’s not just 'Ugh, I’m hot, I feel tired'. It's more like 'Ugh, I’m hot, I CAN'T FEEL MY DAMN LEGS.' Scary shit. That said, allowing yourself to get fired up is not considered reckless. The assault only lasts as long as the heat source and exposure causes no permanent damage. Fun Fact: Before fancy MRI machines became de rigeur doctors actually diagnosed MS with the ‘hot bath’ test. 

So, why would I want to put myself through this? 

Because I still love the beach and the ocean, margaritas and mariachi bands. It’s not ideal but I’m not willing to give up the guac. And the alternative was to stay home and think about how cold I am. Plus, I felt like The Banker deserved to see my bare legs one last time before I retreat into semi-hibernation. 

Knowing that just being in the heat of Huatulco meant I could count on my already weakened legs being even weaker, combined with the reality that lately I've been struggling to get half a block with a cane, we came up with a two part plan.
  1. Low Expectations
  2. Wheelchair Everywhere
Of course we still expected to have a fab time. Low expectations meant only that we wouldn’t plan excursions or anything more ambitious than dinner. And if that felt too hard? Room Service por favor. The purpose of our trip was to be somewhere together and to relax. We would pursue those goals and those goals only. No swimming with dolphins or visiting Mexican coffee plantations. 

Wheels everywhere meant just that. We negotiated this before we left so I could wrap my head around it but also to avoid having to assess its need on a daily or even hourly basis. I didn’t ever want to ask for the chair nor did I want to be asked ‘Is today a wheelchair day?’ I knew it would be easier on me if it were just part of the routine without constantly checking in to see how I was coping in a beautiful but somewhat hostile environment.

This would be the most concentrated period I’d ever used a wheelchair. I had a list of concerns. 
  1. A wheelchair would make me less pretty (eff you, Kylie)
  2. It’s a mega drag for someone (The Banker) to have to push me around
  3. People will stare
  4. Sitters are Quitters
Just a little light existential pondering while staring into the Pacific. 

But then everything looks sexier under a palm tree.

Wheelchairs make you less pretty
My vanity doesn’t take vacations. If anything I ramp it up a notch on holiday. You’ll never convince me I’m as much of a babe being wheeled into a restaurant as I was waltzing in on stilettos. I can feel sad about that so please don’t give me any inner beauty bullshit. I will however meet you halfway and agree that what’s even less sexy is tumbling over in said heels and landing on the cheese trolley. 

I realize how trivial this might seem and I don't care. MS means having to renegotiate my self-image from time to time. I also recognize that there are some pretty hot bitches on wheels out there. I'm encouraged by you and thank you for not hiding your sparkle. (I'm talking to you, Darce).

It’s a mega drag for someone else
If it sucks to push someone around then I told myself the only thing worse would be pushing someone around who’s freaking out about being pushed around. I don’t like being dependant (Can you take me to the bathroom, please?) even if The Banker is the most considerate and accommodating man in town. On the other hand, get over yourself, woman. Because the real truth is, what’s even more of a drag is slow walking in the heat with someone who needs your arm for support and to stop every few minutes for a rest. It’s more of a drag to finally reach your destination but have your day cut short because there's no energy left. It’s taken me forever to realize this. 

People will stare
Okay, so this one is true. To be honest, I didn't really notice (probably because I'm LB, guys). But The Banker noticed and he took the opportunity to stare down every single slack jawed gawker who dared to raise an eyebrow over the pink bikini in the wheelchair. Personally I thought I was pretty boring. Most people were more interested in the bartender at the swim up bar. Or the overly tanned burn victim. Or the old guy in the white speedo. I could hardly believe that after a week in a chair not one person asked me what was wrong with me.

Sitters are Quitters
I might struggle with this one the most. I have translated the bullshit idea of 'Use it or Lose it' into intense pressure to remain upright at all costs. I have drunk deep from this toxic Kool-Aid, and made really poor choices under the misguided belief that the more steps I take the more steps I will be able to take. The frustrating reality is that this simply isn't true. I don't have nearly as much control or influence on this disease as I would like. I believe in exercise and physio but persevering in this Sisyphusian manner is self-defeating and demoralizing. It's what lands me in tears on the sidewalk one block from home calling for a ride because I can't walk any further. There is no need for me to ever let myself get to that point. 

I'm smart enough to know that rather than being an actual limitation, the wheelchair, like my good friend Cathy is actually an enabler, a tool to be used to grant me access to life rather than an extension of my physical body. I get this. I just need to keep reminding myself. Most vacationers travel to escape their troubles but in a lot of ways I have to confront mine. It helps a lot to see the sun. I point my face in that direction as much as possible. And when it’s too cloudy, tequila.

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