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Living with MS

It’s What is on the Outside That Counts

My mood is determined approximately 93% by what I’m wearing at a given time.

It started from infancy, with comfort being a priority. Think: soft cotton onesies and dry diapers. As I grew into toddlerhood and through my early years of schooling, comfort flew by the wayside in favor of glamor (at least what was considered “glamor” in the 80s).

When I was in 4th grade, my parents received a call from the teacher asking if they were aware that I was sporting high heels at school each day.

Apparently my mother’s adult-sized shoes on my kid-sized feet clued Mrs. Smith in that these were not my pre-arranged footwear.

This was not the first contact from school regarding my fashion choices, however. A few years prior, the teacher had asked during a conference if any changes were going on at home. After mulling this over for a while, my mom couldn’t come up with anything:

“I-I was on a business trip last week. Why? Is everything okay?”

“Aha! That must’ve been it, then!” the teacher proclaimed. “Academically she’s been fine, but wore velvet and taffeta dresses with dirty running sneakers to class all week. It was just rather strange.”

Apparently my dad was indifferent about the “homeless-chic” ensemble choices that his child determined were appropriate for kindergarten.

I was lucky enough to have a mom who didn’t fret over the details of my get-ups, unless it compromised the integrity of my family. For the most part 90s-fashion was pretty low-key, anyway, though I sometimes looked with envy on the kids who identified themselves as goth.

Long black dresses and capes, pale faces with dark lipstick;

I wanted to try it, but didn’t think I’d be able to pull off the “too-cool” countenance that seemed so effortless to that crowd.

So I decidedly blended in through high school and college. I kept up with the trends (platform foam flip-flops, tank tops atop other tank tops, risqué mini-skirts, wool sweaters from J. Crew), but didn’t really try anything new during that period of my life.

Upon leaving school and joining the work force, I needed to maintain a sense of decorum, so I dressed preppy and older. My glasses and “teacher-bun” (complete with writing implement jabbed through the center) rounded out the “she’s such a professional” look.

As long as my job was as a professional hot mess, I realize when I look back.

The only thing that set my wardrobe apart were my shoes:

My collection was vast; enviable. Every color and shade was represented, from fuchsia to forest green. But what they all had in common? Height. Towering peep-toes and the tallest wedges took me from pocket-sized to altitudinous amazonian. I was able to walk long stretches, run a marathon if needed, and- most importantly- stand sternly eye-to-eye with my eighth-grade students who had hit growth spurts over the winter break.

I stood straighter and more confidently in my heels, but the moment I switched to flat shoes, I rolled my shoulders forward and waddled like a mallard. Every footfall brought a sense of woe. It’s fascinating how an item of clothing can influence temperament to such a degree.

When I was more than 7 months pregnant with my daughter, I recall slipping my feet into a pair of 4-inch pumps before a night out. I specifically remember that feeling of pleasure I had, to be able to put something on my body that actually fit- that felt GOOD even- was so satisfying. Though it was only 8 years ago, it feels like a lifetime has passed.

I actually can’t pinpoint when I began wobbling.

Looking back I can remember starting to lack confidence in my ability to get up from the table in a restaurant and walk to the restroom. I felt like all eyes were on me: had I drank too much wine with dinner? I could never remember.

During my second pregnancy, I kept falling, especially as my belly grew bigger and threw off my center of gravity. I took precautions to help me balance for the little guy’s safety. After all, I was supposed to be his protector, and it was only a few months that remained. I sat for longer stretches, I gave up exercise, and I stopped wearing heels. I remember that time of my life as being very dark.

After he was born, I was (perhaps a bit selfishly) excited to get my body back.

Falling was more infrequent, but my balance issues were still there. All of a sudden putting on taller shoes was difficult- not because they hurt or didn’t fit, but I genuinely began tottering and weaving awkwardly, as though I was heavily intoxicated. It was a slow progression, but eventually I had to phase out my beautiful high-heeled shoes.

I got rid of most, because I couldn’t bear to let my beautiful shoes see me like this, a shell of my former self, but I presently have a couple of pairs that I’ll slip on- if just for a moment- and let them electrify my soul and uplift my mood.

Then I take them off my feet carefully in favor of some sensible tangerine-and-aqua-floral-patterned flats.

 

*******************************************************************************

Story was in response to the prompt:

“What do your clothes say about you?”

From the wonderful podcast Writing Class Radio

What do your clothes say about you
“There’s no better way to understand ourselves and each other than by writing and sharing our stories.”

I Quit

The time has come; I just have to quit.

Drinking has become a chore. Finding the alcohol in every situation…

quit mimosas

There’s no drink service on this plane/in this comedy club/at this tapas joint? How can I possibly deal?
Will I be able to sneak a bottle into that festival/concert/cruise ship?
How will I function without alcohol at this holiday party/high school reunion/completely random social gathering?

 

Perhaps there is a comfort in knowing exactly where to go (the bar!) and what to do (get a drink!) when entering a potentially awkward situation, but hopefully this is something that a mature (kinda) adult can deal with.

I’m not a person who has some amazing blackout-rode-a-llama-home-from-the-bar-and-there-are-3-people-who-I-don’t-know-sleeping-on-my-kitchen-floor-and-how-did-I-end-up-with-MORE-money-in-my-wallet-than-I-started-out-with-? story, but I’ve definitely had periods in my life during which I imbibed a little more than I should: when I was dealing with my diagnosis, coming to terms with my separation, that time(s) that my kids just would NOT STOP (okay, so that’s daily).

And my interest has just not been where it used to be. I truly feel that sometimes I’ll have a cocktail out of habit, not enjoyment.

quit alcohol

And health!
Of course it’s better for your body to stay away from alcohol. As per WebMD, drinking, even moderately, boosts one’s risk for several types of cancer (but, let’s be honest, that site is infamous for diagnosing everyone, even someone with the slightest swollen glands, with the big C).

The National Institute on Alcohol Abuse and Alcoholism discusses the horrific effects of drinking on most of one’s anatomy, including the brain (shocker: it’s harder to think clearly when you’ve been consuming alcohol), the heart (stroke, among other issues), the liver (I think we were all aware of this one), the pancreas (dangerous inflammation and swelling), and the immune system (maybe get 2 flu shots this year?).

Further research discusses how the chronic abuse of ethanol (alcohol) can have permanent effects of brain function.

And of course my health in particular, which has taken a turn for the worse as of late. I know drinking alcohol is disproved of among the medical community in regards to autoimmune diseases, so this is precisely directed toward my goal of taking MS down!

I’m not talking about the dude that has a couple of beers on Saturday night with his buddies then calls it a night, and I’m not implicating that woman who meets her co-worker for a drink after work.

I’m also not talking about that guy who needs a couple of shots of vodka in his orange juice in order to function for the rest of the day or the lady who carries around a flask of rum to work to pour into her coffee. The chemically-dependent individual is on a whole different level.

I’m talking about ME. I am not a binge drinker. I wouldn’t even consider myself an abuser, but I do drink.

I’m just a girl, standing in front of a bordeaux, saying “No thank you.”

I just don’t need another “thing.”

I remember quitting smoking. How it seemed completely impossible in the beginning. I couldn’t even wrap my brain around the concept of going to a bar and NOT smoking.

  • Being in my car and NOT smoking.
  • Eating a meal and afterward NOT smoking.
  • Taking a smoke-break at work and NOT smoking.

Now, however, I feel so completely free of the burden of cigarettes: of buying them, of having them in supply at all times, of smelling like them (in retrospect, eww!), and of having to go outside in the middle of January to have one.

Will I feel more unburdened without having alcohol in my life?

Let’s find out.

Paint Your Way to Health

My new book has arrived! I’m super-excited to present “Paint Your Way to Health: Using Art as Therapy for Patients Living with Neurological Illness.”

Please check it out on Amazon– it’s free for Prime members, 99 cents if you’re not.

If you don’t use an e-reader, you can easily take a gander using your computer; it’s really short. Please leave feedback for me on Amazon. I’d love to hear your thoughts, as I am working on the second publication in the series right now.

I’m really excited to see my name in print  🙂

Love to all! xoxo

 

Art Therapy
It’s here!

Rain Before Rainbows

Maybe if I try…

Maybe if I try: Rain before rainbows
Rain, rain, go away…

 

Part of becoming a grown up is accepting the fact that you can no longer accomplish “anything you want to do.”

No, I’ll never explore Mars.

No, I’ll never discover that I’m actually a princess, mixed at birth.

No, I probably won’t even inherit millions of dollars from a dear uncle who I don’t recall ever meeting.

And apparently I won’t be able to work outside the home either.

I had argued this fact on two occasions without an actual trial:

  • After my daughter’s birth, I stayed home, with the intent to return back to teaching after the kids were in school full time. Just after my son was born, I was diagnosed with MS. After much deliberation, it was decided (with nearly no input from me) that my career, for which I’d gone to undergraduate and graduate school, as well as countless workshops, seminars, and symposiums, blah, blah, blah was no longer an option. I would be unable to return. I mourned, but still upheld hope: maybe if I tried…
  • During my divorce deliberations it was decided (with, once again, nearly no input from yours truly) that I COULD work; that I was just being lazy by saying otherwise. I rejoiced: maybe if I tried…

And try I did… I uploaded my resume to one of those online-job-recruitment-site-thingies on a Wednesday night, and my first call came in on Thursday morning. With no preparation at all, I started interviewing. I was not quite as nervous as I normally would be, because I wasn’t actually planning on going back until the following year, when my little one was in kindergarten. This was just practice, I told myself. I hadn’t even updated my certifications!

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Withdrawal

Wondering where I’ve been?
Me too- I haven’t been able to find myself as of late.

Most recently, I knew something was seriously wrong, as I was shaking so much yesterday that I couldn’texperiencing withdrawal even type my password into my laptop. After 5 attempts, I gave up. I shouldn’t have been driving; my eyes were darting back and forth uncontrollably. I was dizzy and nauseous and scared. With a disease like MS, I couldn’t help but think, it this how it’s going to be from now on?
The more I took a look at these symptoms, the more I noticed that they were similar to the physical withdrawal manifestations of a heroin addict.
Hmmm, I thought, I don’t remember doing anything like that…
It was then that I figured it out. I’m such a moron. It was approximately a week ago that I stopped taking the 2400 mg of Neurontin that I’ve been on daily to combat the pain that I experience due to Multiple Sclerosis.
I didn’t contact my doctor or anything. Just stopped taking it. I feel like such a fool.

At least there’s a moral at the end of my stupidity, though: DON’T DO THAT!!!

From now on I’m going to consult my doctor about any lifestyle changes. From an increase in my Advil intake to a hike in the woods, he’s going to know about it.

Has anyone else ever done this, or am I the only buffoon out there?

Hot Mess

**Disclaimer: Poor language choices to follow. Perhaps it shows the extremities of my messiness**

 

I am a hot fucking mess.

There is sand stuck to my exposed skin, laced between my toes, and caught in my windblown hair from yoga class this morning, held on the beach on this cold and damp and EARLY morning.

A freshly penned speeding ticket sits in the passenger side of my Prius. I mean, come on, isn’t the trooper aware that my car is unable to maintain speeds past 65 mph without beginning to tremble? I’m not exactly a threat on the road.

I had no time to put on makeup before, so my blonde eyelashes look like the white falsies that a drag-queen might wear to a diva competition and my brows, almost the same overly-milked-oatmealish color as my skin, look nonexistent. I must’ve scratched the side of my face while I slept, because I noticed a red gash stretching across my cheek. I squeeze my eyes tightly, trying to recall the dream from the night before that caused my abrasiveness. No memories though.

My finger nail polish is chipped: noticeably so. My toes too. Crap. I look like a hot fucking mess.

I focus on myself internally. That’s what really matters, right?

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“Vacationing”

Lemtrada treatments don’t make for the best trips…

Mom and I walked along Main Street in Nyack, desperately trying to find the little Italian bistro that served the gluten-free penne where we had eaten the year before. The biggest challenge was that we didn’t even remember the name, just that it had outdoor dining tables and a loud fountain that made me have to pee when I sat too close to it.

After a few blocks, my mom asked the stranger, who I could hear softly padding behind us, if he was from around here and knew of the restaurant.

“No, sorry, I’m just visiting.” He must have seen the hunger-induced desperation in my eyes when I turned around to look at him, though, because he went on. “But why don’t you try me?” Our horrible explanation and lack of name or address wasn’t very helpful. “I’m really sorry, wish I could help.”

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Blue Bicycle

bike

It was propped up against the interior wall of my garage, awaiting a long journey down tree-lined streets, through neighborhoods where children played freeze tag on their front lawns. The bike was fueled by those laughs and yells of playfulness, or, more accurately, it’s driver was. The shiny powder blue steel bars that formed the frame were strong, yet delicate; its brown wicker basket practical, yet dainty. In my mind, I rode that bicycle everywhere.

Growing up in Strong’s Neck, our bikes were equivalent to freedom. At 9 years old, with a simple, “Bye Mom, bye Dad!” I’d leave the house, climb onto my 10-speed, and go.

I hadn’t made any defibicyclenite plans.

My parents hadn’t set up a playdate.

I didn’t have anywhere I needed to be.

I set off for Tara’s house first, one of the only other girls in the neighborhood. She’d open her door and come running out in a flourish, as though she’d been waiting by the front window for me to arrive all morning. Together, we rode up the street to Karl’s, the wind fluting in my ears.

He was already outside with his sister, but stopped talking to her mid-conversation when we pedaled up his drive. From there, we went to several other houses, collecting friends to join our platoon along the way. We rode our bikes for a couple of hours, then usually went over to someone’s backyard, where we’d play until the sky became sooty and Mom called for dinner.

The neighborhood gang would dissipate one-by-one, hopping on bikes to head back to warm suppers. The next day would inevitably repeat this same pattern.

My bike was my freedom back then, and I looked at it now- chrome gears and untouched pedals- and saw it as freedom as well. Someday.

blue bike

A Letter to One I Love

Hey you,

We have to talk (you hate clichéd phrases, I know, but in this case it just seems like the right thing to say). Simply put, I’m hurt. Irrevocable harm has been done; you seem to have turned your back on me completely. These flaws showed up about four and a half years ago, and, call it intuition: I knew, yet I was still dumbfounded.

I mean, how could you?

And, believe me, I know I’m no saint. I’ve made some poor choices in my life too: I smoked for a time (which, unfortunately did nothing to increase my coolness), I consume alcoholic beverages (my fair share, as well as the fair share of several others), I had a diet coke addiction for a while there (mmm… aspartame), but this, THIS is unforgivable!

I’ve changed, but unfortunately so have you. Some can blame time, blame age. I don’t know. It’s been nearly 37 years now, and you decided to revolt. I loved you… I love you. Please, PLEASE return to your normal, healthy state, and stop attacking yourself.

I promise to be good to you from here on in. You’re my one and only body, and I truly want you to be healthy.

Love always,
me

In Retrospect, I’m a Moron

 

TheySeeing things in retrospect say hindsight is 20/20. Looking at things “in retrospect” is never good for the psyche…

I just had such a typical reaction. As with so many in the situation, I blamed myself. If there’s one thinIn Retrospectg I hate, however, it’s being so regular.

When our ninth Valentine’s Day together rolled around, I received no mention, no card, no delivery of over-priced bouquets and chocolates sent to the door. That isn’t to say that couples who don’t celebrate the day are destined for relationship trouble- we just always HAD.

Sappiness is a quality that runs deeply through my veins.

I could sense that there was something awry. As the days went on, I bought pseudo-informative literature on being a better wife to peruse on my kindle, and put some of the ideas into practice. Telling myself I was crazy, and that nothing was wrong, we went back to our lives as normal: me taking care of the kids, him taking care of the bills.

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