Dealing with my MS, Shame Part 1.

I’ve done a lot of traveling lately and have become UBER aware of what flying and exploring is like with disability. Yet I remain “in the closet” with my MS when faced with options to make travel easier, less stressful, less tolling. I had three opportunities recently to ask for help, to ask for that pre-boarding card before jetting off to Boise, Las Vegas and Phoenix, and I denied myself each time.

Contemplating why

Now that I’m home from these journeys, I’ve begun contemplating the whys. My first instinct is always an attempt to answer the simple question, “have you come to terms with your MS diagnosis, Christie?” I’d like to think the answer is a resounding “YES, of course! All of my friends, family and loved ones know I live with MS, I’ve got nothing to hide. “

So, what’s the problem?

Well, I’m not sure. But, lots of emotions come up when I’m faced with the decision to ask for help or not. As I think about it, the four questions below are typical for me when I sit in the boarding area near the gate. I’ve also made an attempt to identify the emotions that come up for me.

What’s the problem? Why don’t I ask for help?

1. If I ask for a pre-boarding pass, am I taking away the opportunity from someone else? From someone who needs it more? Emotion = Guilt.
2. If I join the others with pass in hand, will all the other passengers stare and glare? And, why do I care so much about what complete strangers think?  Emotion = feeling labeled, misunderstood.
3. Am I really having such a bad day that I need to pre-board? Emotion = Denial.
4. If I take the pre-boarding card, what if someone who doesn’t know I live with MS sees me? That someone being a work colleague. Emotion = Fear.

Or, gasp! Is this really all about shame?

Shame is a tough one, isn’t it? And, when it applies to having a chronic illness it can be difficult to overcome. I grew up in an environment where being “ill” was a sign of weakness. I saw examples of my loved ones, teachers, and others who, when they were “ill”, toughened it out, never slowing down. Did I grow up in a culture that despised the “ill”? Yeah, I think so. It was how it was growing up in the 70’s and 80’s, at least for me. When someone in our circle became “ill” the message came in a whisper, to hide the reality that someone was just diagnosed with something quite serious.

So now what?

Dealing with shame is a monster for me as it’s not limited to just my MS diagnosis. As a starting point, though, I’ve begun reading I Thought It Was Just Me (But It Isn’t) by Brene Brown. What an incredible book! I’m not even halfway through it and I’ve gotten so much out of it. First, I learned that shame doesn’t go away (UNFAIR!), just like MS, and yet that makes sense to me as I also read that it’s about how we identify and deal with the shame that makes the biggest impact.

Dr. Brown defines shame as “…the intensely painful feeling or experience of believing we are flawed and therefore unworthy of acceptance and belonging.” This certainly gives me something to noodle over, for sure. Hence, once I finish the book, I will post an update dubbed “Dealing with my MS, Shame Part 2.” Until then.

In the meanwhile, I’d love to hear from you. Does shame come up for you, in your life with MS? And, if so, how do you deal with it?

Take care,

Christie

P.S. to read more about traveling with MS, check out my contribution on MultipleSclerosis.net. My journey of pre-boarding with MS=, or not

Walking the Uneven Streets of Buenos Aires

I recently vacationed in Buenos Aires, my first trip abroad since my MS diagnosis! I had good days and bad days during our two-week stay and sometimes found myself getting stressed and anxious just simply walking down the streets of Buenos Aires since they are uneven with cobblestones and very crowded.  Allow me to share the state of my psyche one morning as we walked from our apartment to the subway station:

The uneven streets of Buenos Aires lurk below

[Christie] Another beautiful and sunny morning in Buenos Aires!  My legs feel wonky this morning, burning and unsteady with every step, so I feel like a drunk and it is not left over from the Malbec we drank last night.  These cobblestones will be tricky.  It’s a good thing I don’t wear high heals because I would fall constantly.  Instead I wear Keens, the most stable and comfortable shoes in the world.  They really handle the cobblestones and make me steady and ready to walk these uneven streets of Buenos Aires.  I like that I have two pairs.  One brown. One black. Squish!  What am I stepping in?  It’s just a little poo, which seems to be everywhere.  There are a lot of dogs in the uneven streets of Buenos Aires usually accompanied by a dog walker and leashed with thirteen other dogs. That’s potentially a lot of poo and this makes me wonder why I haven’t stepped in more. My sweetie tells me, reading from the guidebook, ‘it’s against the law in Buenos Aires if you walk more than sixteen dogs at a time.’ Hearing this makes me ponder how something like this would be regulated.  Maybe Buenos Aires has a special Dog Walkers Unit, DWU, counting the number of dogs per walker.  I imagine the DWU officer asking a dog walker ‘is that little terrier with you, the one peeing on the tree?’  It’s time to cross the street and we wait for the green figure to appear and tell us when it is it safe to go.  In the meanwhile, I notice the enormous piles of trash on the street corner.  And I ask, ‘don’t they have trash collectors in this city?’ I am suddenly reminded that the garbage workers are on strike.  No wonder there is so much trash on every street corner of Buenos Aires. It smells and I stress and I realize that I have more obstacles to maneuver: cobblestones, poo and now piles of garbage and my legs still feel wonky, burning and unsteady with every step. Green light!  We cross.  Oh god.  I freak, ‘why are there so many Argentines coming at me?’  My left eye is whacked, compromised, de-saturated and blurry, and I cannot rely on it to keep me on the straight and narrow. These Argentines are really moving fast! Suddenly, I am forced to use only my left eye since my right eye is now blocked by the figure of an Argentine as we cross the street together. My heart beats harder and my pace quickens. Shadows appear on the cross walk, from the nearby buildings and trees, and the anxiety builds up as I continue walking, in the dark now, refusing to take off my sunglasses because they’re prescription and I am near sighted. As I walk in the dark with these fast moving Argentines I try to figure out, ‘is that one person or three people coming towards me right now?’  Once across the street, I throw out my right hand, drag it along the graffiti stoned walls of Buenos Aires, to keep me steady and ready on these uneven streets. I really don’t want to fall down.  It’ll hurt. I remember what my good friend Mel always says when walking, ‘look ahead. Plan.’ I now look ahead.  Construction coming up! Big Hole! I walk around, quickly and carefully as I try not to fall in.  That would be embarrassing if I actually fell in.  I imagine my loved ones asking me as I recover in the hospital, ‘Christie, how did you manage to fall into the underground of Buenos Aires?’  And I think about how many bruises I’d likely get!  I have enough bruises from all the things I’ve already bumped into:  subway doors and turnstiles, café chairs, and the door handles of the apartment.  I do not need more. It’s not pretty. So in order to avoid more I focus and I plan.  I look ahead for the dangers that lurk on the uneven streets of Buenos Aires.  Cobbestones, poo, garbage and big holes in the streets.  We head to the subway (Subte) and the entrance is wicked intimidating: steep, very steep steps leading into a dark hole. I put my hand out, on the railing and start walking down the stairs. I tell myself, ‘don’t think about the germs and toxins that are caked on the railing.  Just focus and plan on getting down these steps safely’. My hand glides along the railing. Eww!  Germs and toxins.  Good grief.  But, I make it!  We are in the Subte station yet the train we want disappears into the dark tunnels of Buenos Aires. Shit. So we wait on the platform for the next.  I look around and notice that there are a lot of people down and around here.  A lot of Argentines take the Subte.  I begin to niggle.  I hope this crowd doesn’t knock me down.  I am not stable today.  Next train arrives.  Holy Crap!  It’s jammed pack.  How are we going to squeeze on board?  I watch the young man in front of us try first but he gets cut off by three other Argentines the last of whom gets his butt cheeks caught in-between the closing Subte doors as he tries to squeeze onto the already over crowded train.  He gets in, cheeks and all, yet the coat tails of his jacket stick out in-between the Subte doors as the train pulls away into the dark tunnels of Buenos Aires. Decidedly, I’m not squeezing these cheeks on a crowded Subte train.  That’ll feel weird.  Besides, my butt is much larger than his and I’m likely to cause an uproar if the doors try to close which will likely lead to a protest in the streets of Buenos Aires as these Argentines like to protest.  We board the next train which is just as crowded as the other and I smoosh in-between swarms of Argentines who hold me up with their arms, legs, bellies, butts and shoulders and I ask myself, ‘am I even touching the ground?’  All I can do is giggle.  Really giggle. I am the only one giggling on this train, aside from my sweetie, and this makes me giggle more.  The Argentines are not finding this the least bit funny. Suddenly I have to pee.  I hope there is a bathroom at the Evita museum.  Instead.I. Just. Hold. It and silently thank the Argentines who do not laugh for holding up today because I needed some support.  

After walking the uneven streets of Buenos Aries, we squeeze onto the crowded Subte

Despite all this niggling, it has not tainted my wanderlust and I can't wait to see more of this world! How about you? What have your travel experiences been like since your diagnosis (or for your MSer)? I'd love to hear from you!

Best always,

Christie