moments in time

One thing I’ve found that is unwavering about M.S.  Everything you do becomes very deliberate.  How you walk, where you walk, how you eat, when you eat, how you sleep, when you sleep, how you dress.  Routine and diligence become your friends, the backbone to your life.

I was thinking about it today, as I stepped carefully on the sidewalk, my eyes scanning for uneven pavement or cracks.  I thought about how I go to bed and wake up at nearly the same time every day of the week.  How I eat the same things.  How I track things, and chart things.  How I feel it every time I deviate from the norm.

How this disease has made routine a daily exercise.

My alarm began chiming at 5.15a this morning.  The sun hadn’t begun to crest the horizon.  The room was still murky darkness.  Every part of my body felt heavy, aching and slow.  And this was after going to bed at 8.30pm following a nap halfway through the day, riding my bicycle and eating zucchini spirals for dinner.

That’s my life.

I’ve been dying of fatigue recently.  I attribute it to the unrelenting heat of late August and the frenzied stress of a growing business.  The fact that half the time, every single person in my company just gives up and hands me their task.  Because I have nothing of my own to do.  Obviously.

I walked down the sidewalk, noting the picnic tables (if I bump them, a huge black bruise will color my leg for weeks, so I’d like to avoid that), noting the slanting concrete, the jagged edge of a crack, the person walking aimlessly toward me on their phone.

M.S. doesn’t allow you not to be present.  You sort of have to be in the moment at all times ~ aware of your surroundings, what’s happening, who is around you.  Because my eyesight gets dark and fuzzy, I have gotten really good at seeing ‘clues’ in large shapes.  In knowing the train schedule and the track number ~ knowing where everything is located before hand.  The bank address, the turning lane for a restaurant ~ so many things.  Just so I don’t feel lost, so I don’t get swallowed up by the frustration.

I look totally normal.  When you see me.  I don’t have any super obvious handicaps.  It’s not like when I needed Lydia and people could see there was something amiss.  It isn’t like that anymore.  When I’m talking, and I completely forget what I’m saying ~ it seems like anyone who gets distracted.  But it eats away at you bit by bit.  You start to doubt yourself.  Wonder what will be next to go.

So you start to do everything very deliberately.  Park in the same spot every morning.  Follow the same pattern as the day before.  Do anything you can to keep the fear at bay.  To feign normalcy.

legolas

It was January 2002.

I’d come home from studying in Italy and my brother — in his infinite wisdom and willingness to help — had secured me a room for spring semester in a sorority house.  Possibly important to note here, I am not in a sorority and never have been.  But he’d met a girl in Italian class who was headed to Rome as I was coming back, so he snagged her room for me.

I have memories of my parents coming up to move us both back in — but I must have driven, too, because at the time, I was the proud owner of Helen, my shiny red Honda Civic.

It wasn’t snowing when we arrived and carted all my boxes into the room that would be my home for the next few months.  We might have gone out for lunch.  I don’t remember.  I do remember that after everyone left, and I was alone, it began to snow and I listlessly began to put my things away.  I was living in a house full of women I didn’t know.  Back in a town that — until that point in time — had not been very kind to me.  I wasn’t in Rome.  I was alone in State College.

It’s hard to remember all the details, this many years gone, but I know that I was terrible at feeding myself (I didn’t really start to cook until I was nearly 30) and I was very sad.  I remember meeting the girl in the room next to me — far too chipper, far too happy about life.  Her hair fanning out like a fountain from her high pony tail.  She seemed nice enough (and we are friends to this day!) but I wasn’t very enthusiastic about anyone at that point.

I think I suffered through the entire next day putting my room together.  I don’t think I went anywhere, because the snow had come fast and furious, and the roads weren’t inviting.  It was probably dusk when i decided I couldn’t possibly stay in that house for one more minute.  I bundled up, locked my door, and headed out to walk the streets.

It was bitterly cold.  The wind was wicked, spreading the already fallen snow across bare surfaces, numbing any exposed skin.  The snow was like powder, a fine dust in the twilight.  The streets were fairly empty; both of cars and people.

When I went to school at Penn State, there were two downtown movie theaters.  By this time, the small, one screen cinema had closed and was in the process of being turned into something new.  But the multi-screen one across from the metered parking lot and next to the Gingerbread Man (also, sadly, extinct) was still there.  When I couldn’t bear the cold anymore, I stumbled into the lobby, hoping to find a movie that was starting soon.  I’d seen “Ocean’s 11″ over Christmas break, and I would’ve watched that again.

But absolutely nothing was starting within an hour except for “Fellowship of the Ring.”

I remember taking a keep breath and weighing my options.  Go see a movie I had absolutely less than zero interest in ever seeing and be alone, in the warmth, for a few hours (and thus avoiding returning to the sorority house).  Or continue to wander the streets, and have to go back to that house.

I bought a ticket.

The movie theatre had multiple screens, but some were very small, with only ten or twelve rows of five or six seats.  It was playing in one of those, and I shuffled into a seat near the back.  There was a smattering of people in the seats in front of me.  I peeled my coat off, and tried to warm up.  I think I’d bought myself a soda and some popcorn.  It wasn’t long until the theatre dimmed.

There were no previews.

I sunk low in my seat, wondering if I could possibly sleep.  I was tired, and that house was so unfamiliar.  It was so cold.

And then the movie began.  And I was completely transported from the first moment.  I found Hobbiton endearing, and the Riders in Black terrifying. I loved Merry and Pippin and the dogged loyalty of Samwise.  I loved the stoic nobility of Aragorn and the majestic beauty of Legolas.

In a strange, surreal sort of way, “The Fellowship of the Ring” saved me.  Those first few weeks living in the DZ house were rough.  But I didn’t care anymore, because Tolkien and Peter Jackson had completely transfixed me with the story of One Ring and Middle Earth. It didn’t matter that I didn’t want to be back at school, that I felt as though I had no friends. None of it mattered, because I had Frodo, and Merry and Pippin and Samwise.  I had Gandalf and Gimli and Aragorn and Arwen and Legolas.

To this day, my husband puts on “Fellowship” when I am sad, when I am tired.  When I need comfort.  We have watched it more times than I can count.  I know most of the lines.  It feels magical, even fifteen years later.  Literature – creativity and imagination — those are the things that have always saved me across the years.  When I’ve been alone, deserted, lost.  Something that lifts you up and takes you somewhere new.  Somewhere exciting and unknown.  Something created from nothing.

beginnings

I wasn’t always talkative.

When I was younger, I was painfully shy.  Handicapped by multiple moves and the unfortunate combination of buck teeth, bad vision and very thick, very curly hair that I had no idea what to do with.  I don’t think my mother did, either.

I have memories of my mother being a mom, but mostly I have memories of her being a strong, working woman wearing beautiful clothing, with perfect makeup and floating on a cloud of perfume.  I wished I looked more like her.  Maybe she did, too.  I wasn’t a very attractive child.

Across the years I’ve grown into both my name and my looks.  But moving from school to school and dealing with the painfulness of trying to fit in with children who already had other friends — I think it’s part of why I’m such a loner.  Part defense mechanism, part survival.  I would spend days lying on my bed, reading book after book and eating crackers with pepperoni and squares of dark chocolate.  Wrapped up in imaginary places, with imaginary friends.

It was sixth grade English — a hot, stuffy afternoon — when I discovered my love for theatre.  I think our teacher — a tall, perpetually pale man with a ginger beard — kept a flask of whisky in his lower desk drawer.  He definitely leaned down there often enough to give all our minds the opportunity to speculate.  I don’t know how it happened that we were acting out scenes from an old, orange grammar book, but we were.  And I reluctantly made my way to the front of the class.

It was probably six lines, read with a girl who emanated energy and happiness from her very being.  But it made me feel alive.  Happy.

Happy at Pine Middle School was a rare thing indeed.

In the end, after pursuing acting all the way through university, the painful shyness came back.  I didn’t go to New York.  Instead, I hid for another year in State College, waiting tables and avoiding the responsibilities of life.  And then I stumbled — possibly accidentally, I don’t really remember — to Philadelphia.  Where I also avoided the stage and instead perpetuated anonymity in restaurants, asking other people what they’d like to drink to start.

I haven’t thought about those choices a lot recently.  Everything brought me to where I am, who I am, to the man I married, to the puppy I get to parent.  But maybe — sometimes — dreams lie dormant until you are ready.

I have a great job.  It has been a God send as I’ve learned to navigate my disease.  It has given me flexibility, and the money to pay my bills, buy a home, live a comfortable life.   I’m inherently proud of the restaurants I run, the company we strive to be, and the people who work tirelessly to make it all happen.

But there are moments when I feel like there’s a whole part of me who is missing.

scattered

My brain is all over the place.

I read an article in EW recently — a top 50 of things that made people (mostly staff members) happy.  The list varied greatly, but it made me happy just reading what made other people smile.  I thought — what a cool exercise and blog post.

And then at the end of last week my head pretty much exploded with anger because of circumstances at work.  And I sort of blogged about it on Friday, but after forty-eight more hours of thinking and lost sleep, I felt I had other things to say.

Last but not least, I feel as though my face care journey deserves a follow-up.  My last post was sort of ambiguous about how I really felt.  And while know my thoughts about it all after over sixty days, I figured it might be fair to share it with anyone who actually cares and doesn’t know.

I have a very deep — and inexplicable — love for any Fast & Furious movie with Paul Walker.  The seventh installment was weird — sort of surreal — but the tribute at the end was worth it. My favorite movie of the bunch is “Fast Five” which is the beginning of what my husband and I refer to as the “Ocean’s 11″ theme.  And at the very end of the movie, after Vin Diesel and Paul Walker drive off, leaving Dwayne Johnson to check out the battered safe — a piece of music begins.  It’s called “Danza Kuduro”.  I didn’t know that for a long time.  But I love that song, and no matter what, a huge smile takes over my face when I hear it.  That was the first thing I thought about when reading the EW article about happiness.

Something else I love — the softness of my face when I’m done using the cleansing scrub from R+F.  There is something so satisfying about nice, clean skin.  I will confess that I have become a fan.  I like their products.  Not only because they seem to work really well, but they don’t irritate my skin.  And that’s a huge plus.  Additionally, my skin is much less dry — in fact, not really dry at all.  Partially, I’m sure, because I am not washing my face with a foaming face wash anymore, but also because their moisturizers are just amazing.

And finally, in anticipation of a girl’s night out this upcoming Friday, and the hideous-ness of work this past Friday, what I found in my brain flurry and frustration, was a calm constant.  I feel beyond blessed that I do not need to look to external triggers to justify who I am.  Every part of my life is because I made purposeful choices.  And sometimes those choices make things difficult, but I made them because I wanted to live an authentic life.  I wanted to sleep at night, and be content in who I am.  Friday angered me, on a very base level.  But — and this is much harder to remember than to know — most people’s actions are about themselves, and not about the object of their words/actions at all.  I was internalizing something that didn’t need to be given the attention and power that I gave it.  I know who I am, I know my values.  I know who my friends are, and I know I can trust those people.  I feel confident and comfortable in that knowledge.  The strength of the choices I’ve made, and the life I choose to live.  I’ve earned what I have, because I do good, smart work.

And actions always speak louder than words.

wonder woman

There are a few things my husband will tell you about me if you ask him.

The first is that he loves me and I love him.

The second is that I love musical theatre and have been driving him crazy with “Hamilton” since April.

Third, he’d tell you I have a really cool job in the restaurant industry.  (He thinks much more highly of it than I do at times).

And then he’d tell you that under the surface of my benign agreeability, I’m a rampant feminist.  Not like — we don’t shave our under-arms or we spell the word wiomyn with a “y” to avoid the word men. No, no. Not THAT extreme.

But the truth is, I have memories from a young age of my mother surrounded by women from the Berk’s Women’s Network collating newsletters and being very vocal and strong about women’s rights, equality and all that goes along with what I like to call “smart women’s feminism.”

I’ll vote for Hillary because it’s taken until 2016 for a woman to even be considered as a candidate to run our country.  And while she might have some skeletons, she’s smart and she takes a boat load of shit that would never be said to men.

I deal with the undercurrent of sexism on the daily.  Sometimes it rankles me, and other times I just let it slide.  I fight too many battles to work myself into a frenzy every time someone is condescending to me, or treats me as though my brain is somehow on a  lower level than one attached to a penis.

But I will tell you that there are few things that get under my skin more than women who use sex and feigned ignorance and naiveté to achieve things that the rest of us work tirelessly for because we have integrity and self-worth.  And it really angers me when it happens to me repeatedly.

Ladies, let me say this — and I will say it repeatedly and loudly.

Save yourself.  Have enough dignity to look yourself in the mirror and love yourself, flaws and all.  Have enough decency to ask the world to see what you have to offer beyond your pretty face and adolescent boy body.

Not only do you do damage to yourself, but you do damage to every other woman out there, fighting tooth and nail for equality and respect.

Something else my husband might tell you. It takes a while to get to the breaking point. But once I get there, there’s really no coming back.  I’ve worked very hard for everything I have and for everything I do.  I was not given hand outs, or favors.   And I can be just as venomous as I can be kind.  So there’s that.

 

 

reset

I think one of the most challenging things is to stay the course, and never veer off the path.

I say this first — because this past week has been a beast for me.  Heat, and M.S. and work, and fatigue and … well, just about everything. I felt like my spinning top was beginning to wobble, and I just couldn’t right it.  Burger here, candy there, not enough exercise, not enough water. I couldn’t pull myself back on track.

And I say it secondly, because last night my phone rang as John and I drove home. Luckily, we were at the gas station (it’s not easy to answer the phone while driving in the Jeep with no roof or doors — just very loud).  And I answered, and on the other end of the receiver, my friend just began unloading a little bit of her soul.  And all the things I remembered going through at the beginning of M.S. came back to me, and i heard myself in her words, in her fears, in her anger.

When I was diagnosed — which feels a little like yesterday, and a little like a lifetime ago — I thought nothing was going to change.  I really did.  I believed that.  Deep in my soul, in the depths of my bones.  I was very, very wrong.

Everything changed.

But I had to walk that road.  And it was a challenging, difficult road.  I was angry for a long time.  I felt trapped.  Everything felt hopeless.  I was scared.  Terrified of the disease, terrified of the treatments.  Hopeless and helpless.  I couldn’t even determine what my path was, since things were constantly changing & my body was letting me down in different ways nearly every day.

And even the things I thought I knew — they were hard to remember in the anger and the pain and the fear.

It’s still hard.  This week was a testament to that.  But it’s not as hard as it used to be.  It’s not Lydia-hard.

I think it might be Lydia-hard for my friend.  And my heart breaks thinking about it.  I want to say the right things, I struggle to remember what I wanted — needed – to hear back then.  That it would all be okay?  …. Will it?  That the medicine will fix it …. Will it?  I don’t want to make promises that I can’t be sure will be kept.  I don’t want to reassure her with empty words.

I didn’t have anyone at the beginning who really knew.  I mean, John understood.  He understood having an incurable disease, he understood hospitals, and tests, and doctors and medicines.  He understood how much it takes out of you — the worry, the anxiety, the fatigue.  But he didn’t understand how my body was invisibly breaking down.  I want to reassure her, because I know what it feels like to look totally normal on the outside, but to be feeling horrific with no visible symptoms.  To have people dismiss something because there’s no physical evidence.

I want to be there — let her know that it will get better.  But when people said that to me three years ago, it made me angry.  How could they know?  They didn’t understand.  Their doctor wasn’t saying they were a tough case.  I want her to know that there are people in her corner, people who will catch her when she falls.  But all those words from people made me so angry.

Is it better because I have the same disease? … Maybe …. I don’t know.

What it made me think about last night, as I housed my third Wayback burger this week (yo, that Philly Burger is out of control delicious!) was that i needed to give myself a break.  I needed to take a deep breath, shake off this week, drink some water, get some sleep and get up in the morning and start again.

So that’s what I did.

And I rode my bicycle for an hour.  And I had a green smoothie.  And I feel slightly more centered.  And slightly less angsty.  And I know that if I just focus, I’ll be okay. And hopefully, so will my friend.

hitting the wall

Two weeks ago, I had my first real business trip.

I don’t know why it was so exciting — but I was thrilled with the idea that I was traveling for work.  I didn’t care that we were going to Kansas City (and Denver, but the business was in KC) and flying every morning for three consecutive days.  I didn’t really think that missing my daily bike rides would be a big deal, and I figured Starbucks (with their chai tea and green juice) were everywhere.

On the heels of this illustrious business trip, I had invited all my work people over to the house for food.  I don’t know what I had been thinking when I invited everyone — but I had, and it pulsed on the calendar — dark black letters, and the knowledge that at some point, I’d thought it would be ‘fun’ to have my co-workers and boss over for food.  (It was actually fun!)

Long story short, I mentally survived both the business trip and the little afternoon get-together.  But my body did not.  I woke up last Monday and could barely walk. Everything made me dizzy.  I wasn’t sure what I remembered and what I didn’t from the days that had preceded it.  My body just shut down.  And remained in power-save mode for nearly a week.

I’m telling you, I’ve had these moments before, but never quite this debilitating.  Never quite this all-consuming.  I spent Monday in a fog of sleep and intermittent email checks.  I only got out of bed to use the bathroom.  And once to venture downstairs to eat.  But in general, I felt like I was going to die.

I’m sharing this mostly because M.S. is no joke, folks.  And even those people who live with it every day live very specifically because of it, or live very uncomfortably.  I was so angry for so long about the sacrifices.  But now, I fully understand and appreciate why things are the way they are.  I’d rather eat vegetables, ride my bike and go to bed at 9pm and still be able to fairly fully and functionally exist in society.  Rather than do whatever I want, whenever I want, and pay the price over…and over… and over  Because the further into this abyss that I slide, the more I know about how long everything takes.  And with M.S. it’s about ten times longer than normal. Ten times longer to heal. Ten times longer to recover.  Ten times longer.

Most people can do a three-day business trip, go to work the last two days, prep their house for some people to come over and eat, and then continue into the next week unscathed.  Not this little duck.  Yesterday was the first day I woke up and didn’t struggle to walk the first few steps out of bed.  Seven days after our luncheon.

I used to feel self-conscious if I said no, or went to bed early.  As though I was being a bummer, a drag.  I’ve gotten over that.  Every once in a while I push it too hard, I try to go a little further than I should…. And then last week happens.  Brain fog for a full week of work.  Night sweats.  Painful exhaustion.  And I remember with amazing acuity that I have multiple sclerosis.