Crotches and Belt Buckles: Cocktail Party Blues

The pizza had just arrived.  Before I could take my first bite, the subject of my husband’s company cocktail party surfaces. “Thanks, but no thanks. I don’t want to go,” I say with steadfast determination.  “I’ve already made sure that chairs will be available,” he counters, attempting to make the event seem easy, cozy, attractive even. Then, as he points at me with the tip of his piping hot slice of pepperoni pizza, he gets all serious and a little pouty.  “Look, I  run the company. It would mean a lot to me if you came.  My staff and colleagues are looking forward to meeting you. ”  On the inside, I roll my eyes, feeling a little irritated that some of the melted cheese from the pizza was still stuck to his face. If I’m not there, who will make sure he wipes off his chin, which was now dripping with grease and mozzarella?

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Resigned, and feeling slightly manipulated, I agree to join in on the merriment.

Gilles’ mom once told me that sometimes you just have to do things you don’t want to do, like get a root canal,  euthanize your pet lizard or unplug the toilet.  And, going to this cocktail party was right up there in the category of things to avoid.

At cocktail parties, everyone usually stands around with a drink in hand, eating hors-d’oeuvres and chatting. I’m all good with the chatting and eating part. I also enjoy meeting new people. It’s the standing around that is the most difficult. When it hurts to stand for more than 5 minutes because of nerve pain in your feet, it is hard to feel relaxed at these events.

cocktail-parties

After no more than 5 minutes after our grand entrance,  my anxiety rises and I desperately scan the room for a chair or something to lean on. Rocking back and forth, relieving pressure first on the right foot, then on the left,  the right, the left, I wondering if the other guests are noticing my discomfort.  So as to not look too silly, I  even start bopping my head and swinging my hips to the beat of the music, as if I were lightly dancing and really into the melody. (This probably made me stand out that much more, but at the time, it seemed reasonable.)

10 minutes is my max tolerance before  I excuse myself from whatever superficial conversation I am engaged in and plop down right into the arms of my new best friend- the chair. Thank God – the pressure is off of my aching soles. I wave to Gilles, just to show him where I’ve landed. Colleagues in tow, Gilles slowly makes his way toward me and over the noise, the music, the laughter, I overhear, “…… foot problems……can’t stand too long…..pain.”  One of his cohorts, wearing a glittery cocktail dress and 10-inch heels chimes in, trying to relate to my situation, “Oh, my feet are killing me too! Ouch! I just have to slip these off….what women wouldn’t do to look their best! Staring down at my bulky size 10 (mens) hiking shoes, I could not take it anymore. “OMG, can we leave now?” I pleaded to deaf ears. “I just can’t relate to these people and they obviously can’t relate to me.” But, my protests were drowned by the noises of background laughter, glasses clinking and live, blasting music.

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Loving the comfort of my chair, people politely stop by to say hi, but no one really wants to sit with me. Why? Because it is a COCKTAIL PARTY and people STAND at cocktail parties. As a seated attendee, engaging in casual or meaningful conversation with a standing guest just translates into craning of the neck in an upward position for an extended amount of time. The result? A trip to the chiropractor’s the following day. So, to bypass unnecessary appointments and self -afflicted neck pain, I set my gaze forward, looking straight in front of me. From this vantage point, the scenery is mostly just crotches and belt buckles.  That’s exactly what I wrote – crotches and belt buckles!! Yep. Can you say, awkward? What’s worse, if the room is crowded, intimacy is quickly forgotten with up-close views of back pockets and butts. Feeling pretty helpless, I just end up praying that no one passes gas too close to my face. Escape would be difficult.

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I usually get a few stragglers who spend some time talking about how mean Gilles is as a boss (just kidding), but mostly I pretend to be really busy on my phone, answering urgent messages, texting and making note of some vital, earth-shattering information.

I’m usually overjoyed when it is time to leave. Another holiday party over. Check! In all honesty, I think I would have rather unplugged the toilet.

There is no moral to this story, but here are a few thoughts:

  1. If you want to see crotches and belt buckles up close and personal, attend a cocktail party. Make sure to sit for the entire duration of the party so you’ll be able to relate to my experiences.
  2.  Feign sickness and just don’t go to standing only events. Stay home, watch a movie and cuddle with your cat or dog. It’s much more relaxing and the therapeutic value is undeniable.

girls-and-their-cats-breanna-and-vivienne

 

 

Wheelchair Horror Stories – #1

Ever had to use a wheelchair to get from here to there? Now, I’m not talking about temporarily using a hospital wheelchair to nurse a broken toe or to be wheeled out of the maternity ward after having a baby. I’m talking about relying on a wheelchair to get around for an indefinite amount of time because walking is too painful, extremely hard or simply not possible.

When I was pregnant with Yohan, I developed plantar fasciitis. It was  1993 and we were  living in France at the time.  My french PT chose to implement jackhammer “massage” therapy on the bare bottoms of both feet to loosen up the tightened fascia.

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“Zis weel feel veghrry good. Eet weel ‘elp wit zee pain.” Monsieur Rémy promised.

He turned on the pummeling device and went to work for what seemed forever on the right foot: GRRAKKA KKAKKAKKAKKAKKAKKAKK AKKAKKAKKAKK AKKAKKAKK AKKA KKAKKA AKK  (OW, OW, OW), and then the left: GRRRAKKA KKAKKAKKAKKAKKAKKAKK AKKAKKAKKAKK AKKAKKAKK AKKA KKAKKA AKK (Double OW, OW, OW). It really hurt but I figured, “No Pain, No Gain”  right? 

WRONG!!!

Long story short, from that day forward, 24 years ago, nothing will ever be the same. My life had forever changed. My brain translated the pulsating vibrations as a threat, leaving the soles of my feet to ache, burn, freeze, stab, and just plain hurt.  I no longer count the years, but the memory and the pain are forever etched in my feet and in my heart.

3 years later, Yohan, Gilles and I moved to California and my feet were still killing me. I tried everything, and I mean everything to alleviate the constant discomfort: acupuncture, medication, nerve blocks, psychotherapy, Tens, myofascial release, creams, gels, patches. Nothing worked, so after a lengthy and heated internal debate (the reality of using a wheelchair scared me), I  purchased a custom-built wheelchair.

wheelchair

Here are just a few highlights from the first year or two:

“Oh dear,”  laments an eighty-something-year-old in the grocery store. As I look up, she was peering down at me, pursing her lips and shaking her head slowly from side to side. “You are just too young to be in that chair.”  Um. No duh, but I am, for now, and by the way, why am I even talking to you? 

“Hey, this looks FUN!” yells a “friend” as he unexpectedly grabs the push handles in the back of the chair and starts to zoom me down the street, swiveling erratically to the right and to the left.  He thought he was brightening my day, adding a little zest to my boring existence. Careening down the street, I was furious with my helplessness, vulnerability, and especially Monsieur Rémy. The guy who was pushing me around? We are no longer friends. He’s dead to me.

“Well, Heeellooooo Sunshine!” singsongs a salesperson at Macy’s. How are you doing today? she asks, enunciating every syllable with exaggerated grimaces which made me wonder if she thought I was deaf and had to read lips to communicate. Then she simply turned to my sister and asked if there was anything in particular “she” needed, referring to me. Oh, I get it, she assumed that I was mentally and physically disabled. You have got to be kidding me. Her strategy: avoid all eye contact with the sitter and go with the stander, the one “in control” and who looks the most normal. Normal must be in the eye of the beholder because on that particular day, my sister, Kathy,  was dress as a blueberry…really. She was drumming up business for her summer business, Island Blueberries. 

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On another note, if you don’t get killed, some of the following situations could be translated as funny…..years after the fact.

This is the real Kathy.

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Kathy, bless her heart, always volunteered to push me around downtown Burlington when I visited in the summer. Going into the mall,  Kathy grunted several times in an effort to get the front wheels of the chair over the seemingly extra tall threshold (bottom of door frame). She pushed once (Heythat was my back!…don’t use your knee!), she pushed twice and the third time….SCORE! The wheelchair unexpectedly jerked over the doorframe with such force that I fell forward, right out of the wheelchair and onto the cold, hard floor!

wheelchair.

That very afternoon, I Googled: manual wheelchairs + seatbelts+ overly enthusiastic sister.

On a different day, we encountered yet another obstacle. The wheelchair ramp to the store in question was short and steep. It looked something like this:

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Going forward was out of the question, so Kathy, with all her might,  pulled me into the store backward. Gravity was pulling me forward (I had not yet received that damn seatbelt). It felt like I was going to tumble out of that chair, and roll into the street. She got me to the top of the ramp and wouldn’t you know it…the bottom of the doorframe was again, extra high (What is it about buildings in VT?)   I pleaded with her to just leave…it was not worth the trouble, but my sister does not back down when facing a challenge.  And she rarely listens to me, so I held on tightly, trying to shift my weight backward. Then I heard 2 employees scream, “WE’VE GOT HER!” and before I could say, “this is really embarrassing“, one woman  helped my sister pull, when the other suddenly appeared in front of me, and started pushing the arm rests to get the  chair into the building. With three people pushing and/or pulling, we made it into the store, but I had had it, I was done shopping for the day.

Today, we laugh when remembering those mortifying incidences, but to those who experience similar or worse situations daily, it’s really frustrating. Here are just a couple of tips when interacting with a person with a disability:

  1. Respect Personal Space-many use mobility aids, so don’t touch, use, lean on or move the person’s wheelchair, walker, cane, etc
  2. Speak in a normal tone
  3. Talk directly to the person with a disability
  4. Ask before you help

More tips to come. Have any to share?

Good Friends Are Hard to Find: Yohan’s Foot Surgery – #18

Good Friends are Hard to Find: CMT feet, Cheetah legs & Time travel

It was in the fall of 9th grade, and Yohan had just twisted his ankle, yet again. It was a bad sprain, nothing a couple weeks of icing and crutches wouldn’t cure. But, a bum ankle was just the tip of the iceberg. Chronic sprains, neuropathic pain, footwear woes were more the norm as his CMT progressed. His good friend Will, trying to make Yohan feel better, innocently came up with a solution to stop the madness. “Yohan, why don’t you just get below-the-knee amputations? I bet they could give you an awesome, high-tech pair of Cheetah Legs, and then you could run, play sports, hike….you could do it all!, ” he said as his thoughts drifted to Yohan’s  first gold medal sprinting win at the Paralympics.

sprint

As crazy as this idea of artificial limbs sounded at the time, it didn’t seem so far-fetched today.

Here are the facts:

-Yohan had reconstructive foot surgery in June.

-As soon as he was given the go ahead to walk, he developed a pressure sore on the ball of his foot.

-Pressure sores are persistent and in his case, a sign that his foot mechanics are off.

-Orthotic modifications have not been helpful.orthotics

-One surgeon suggested surgically lifting the big toe bone, and straightening all the toes, while a second surgeon had a completely different perspective. They do agree on one detail: Both think another surgery is imperative to get him back on his feet. We were hesitant to get a second opinion- it often confuses the picture even more, and then the patient is left to figure out the “right” solution.

Lately, I find myself saying the “F” word ….a lot.

f-word

Why? I am angry, frustrated, scared, disappointed, and did I mention, scared? It feels as if we are rolling the dice or playing Russian roulette: One wrong move and BANG!!  You are no longer walking. Maybe a classic case of negative thinking,  but that’s the analogy which came to me, so I used it.

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Today, I’ve had a bad case of the “shouldawouldacouldas,” otherwise known as regret or backward thinking. If only if we could just go back to May, to the joy and happiness of Yohan’s graduation day, with the knowledge we have today. Maybe the surgery would have gone differently. Maybe we would not even have had the surgery. Maybe he did not even need surgery. High? No, I am not high….a bit delusional perhaps, but not high.

I was even Googling “time travel + start-up companies+ Steven Hawkins” hoping to discover an investment opportunity to enhance the development for time machine technology. We could even launch a Time Travel app!  Wouldn’t that be cool? I didn’t find what I was looking for, but I did find this interesting article: http://www.dailymail.co.uk/home/moslive/article-1269288/STEPHEN-HAWKING-How-build-time-machine.htmltime

Balderdash!! STOP. REWIND. The only way forward is to look ahead, not back.

forward

If I invest in anything, it will be in Yohan’s future and the future of so many with CMT. At least in this realm, the CMTA is making tangible and reality- based progress. If you do not know about the STAR or Strategy to Accelerate Research initiative, click here:  http://www.cmtausa.org/research/our-star-strategy/

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We are not really ready for the cheetah leg prosthetics. Having chronic pain myself, I too fantasize about getting cool-looking prosthetic limbs. It’s tempting. I mean, who wouldn’t want to look  and get around like actor, activist and athlete Aimee Mullins?:

aimee

But, both Yohan and I are kind of attached (literally and physically) to our own feet and calves, And then, of course, there is that problem of nerve pain, phantom limb pain, emotional turmoil, financial considerations, etc…..it’s a big decision, one we are seriously not considering. But Will was right, they sure are impressive. Love you Will!