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.
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.
A wheelchair would make me less pretty (eff you, Kylie)
It’s a mega drag for someone (The Banker) to have to push me around
People will stare
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. Please followTripping on Air on Facebook.
5 thoughts on “Sitters are Quitters and other lies”
Hey Tripping, excellent post. Glad you guys had a good time and hope if I ever wind up in a wheelchair my attitude is as stellar as yours. Thank you. Music listened to while writing this post – Soundtrack to Moulin Rouge, special emphasis on “Your Song.” (Like Brad Pitt’s character in “Mr. and Mrs. Smith” says, “I like it, get over it.”) Also, “Lady Marmelade,” and “El Tango de Roxanne.” Thanks again, and Enjoy.
Ooh, Moulin Rouge. J'adore.
I'm glad the gawkers didn't bother you. The fact that The Banker limited himself to merely staring down those rude enough to stare at you says a lot about what a good guy he is.
Someday people will stop asking what's wrong with me and I will gradually realize it's because I've grown old and grey and am expected to have a cane or wheels. And maybe that will feel weird. Like when you notice that you don't get carded at the liquor store anymore. No one ever asks a granny with a cane 'What's wrong with your leg?'
People never ask me why I use a scooter or wheelchair. You’re right, granny with a cane, it is like never bring carded. People stare at anything out of the ordinary and are too involved thinking, “I’m glad that isn’t me in that scooter or wheelchair.” Please, use what I learned when performing; “Think of the audience without clothes.” That should provide all the confidence you’ll need.