My Shot

My obsession with “Hamilton” is absolute.

Today, the ‘Hamilton Mixtape’ was released.  I got on the train at 6.47am and hurriedly downloaded on Apple ITunes.  (I would have pre-ordered, but J and I have a family plan, and his card is attached to the account … which means I don’t know the security code.  Probably a good thing!)

From the very first second, I felt like my heart was going to explode with happiness and love.

I don’t know what it was about “Hamilton” that totally captured me on April 11th of this year.  I don’t know what even inspired me to listen to it.  Possibly the many posts on social media from my old theatre school mates raving about this new phenomenon.  It felt as though the whole world was coming down with ‘Hamilton Fever.’

The Mixtape is so interesting.  Part of the appeal of “Hamilton” is the idea that Lin-Manuel Miranda wrote a Broadway musical using the influence of hip hop (about a founding father nonetheless).  When I listened to the musical, it was so fresh and new — it dug it’s hooks into you, and didn’t let go.  The Mixtape is full of hip hop artists covering MUSICAL THEATRE SONGS.  I mean — first, how awesome?!? And then — it doesn’t get much nerdier than that.  Who would have thought? Each song is better than the last — each new interpretation adds dimension to songs I’ve been listening to for months.  Musical theatre is relevant again — in a big way.  I mean, the artists on this album –wow.

I cannot rave enough.  I really can’t.  What a great gift for a meds Friday.

 

the first of december

I woke up this morning; the sky was a pale, rain-washed blue and the air crisp in the early morning ~ a welcome change from yesterday’s muggy warmth.  December had begun.

Fourteen years ago, my grandfather passed away on December 1st.  I’d only known one grandfather ~ my mother’s father ~ and I hadn’t known him very well.  Three thousand miles of vast blue ocean lay between where I was born and raised and where my mother’s family lived.  But I’d loved my grandfather.  With his thick, white hair and equally thick, cable-knit sweaters.  He wore slacks, and a collared shirt every day that i knew him.  He took long walks around the walls of Berwick-Upon-Tweed with a pair of heavy binoculars (the better for bird-watching) and he spent his afternoons in the sitting room on the second floor of their home.  Sometimes reading with the radio crackling in the background.  Sometimes watching sport on the TV.  I watched several summer Olympics in that room with my Grandfather.

He’d been sick for a long time prior to leaving us all.  But death still catches everyone off -guard and death is irreversible.  Nothing could bring him back once he’d gone — not for an apology, a last cup of tea or round of golf.  Not for a final conversation, his words carefully chosen and his Scottish lilt humming like a lullaby.

I loved my Grandfather.  I loved his thoughtfulness, his quiet consideration.  When David and I were little (David was named for him), he took us to the library in Berwick and we were allowed to check out a book each.  I remember several inconsequential things about that book — that it had a huge silver square in the front cover (probably a scan, or tracking device for the library); that its inner cover was orange and yellow and the pictures were big, and colorful, the words large black font along the top.  I believe it was about dinosaurs (Dave & I liked dinosaurs).  But what I remember most was Grandpa allowing us to climb into his big arm-chair onto his lap, and wrapping his arms around us, he read us those books.  He explained the things that confused us. He taught us.

My grandfather truly valued education.  I think – maybe – he thrived on it.  All his children are very intelligent and curious.  Some use this gift to continue learning, some use it to control other people.  I guess that’s how intelligence works.

One of my very last conversations with him happened when I was twenty-one years old, and I’d come to visit my English family during my semester studying in Rome.  We were in the sitting room, Grandpa in his arm-chair, me on the sofa.  We were having tea.  He asked me about my studies.  What I was learning about while in Rome.  What I liked, what i didn’t.  We talked about the art of taking notes during class.  It was the most adult conversation I ever had with him.  Maybe he saw my mother in my eyes — in my smile.  Maybe he heard her in my words.  I think my mother is the most like my Grandfather of all five of her siblings.  (Well, the grandfather I knew.  He was different when they were young — damaged by the war, angry at life perhaps, for its cruelty).

I know he loved me.  He loved me, and he loved my brother – even when he didn’t understand us.  He loved my mother and he loved my father.  He did the best he could by us – even though we were so far away, so foreign to him.

The morning he died, we’d taken family pictures in the living room before Dave & I headed back to school.  My Mama Bear wanted to send them to him, to he and my Granny, since Grandpa was so sick, and in hospital in Melrose (for some reason that name sticks with me).  Dave and I got in the car and had a painfully long ride back to Penn State.  My mother called me — twice.  Once, to find out where I was, the second time when I was unpacking in my room.  I don’t remember what she said.  It was calm at first.  Her voice was even.  But I remember crumbling, as though my legs suddenly gave out.  I lay in a ball on the floor of my room.  The carpet was hunter green.  I cried for a long time.

I ate Thanksgiving leftovers for dinner that night.  Watched an episode of “Band of Brothers” with my roommate.  I don’t think I will ever forget those details.  The feeling of the carpet, the smell as I gasped for breaths while sobbing.  The texture of the blankets on the couch while I lay, nearly comatose, staring and not seeing the TV.

I think of him often.  And I always think of him today.  I also think of him on May 17th — his birthday and the day I graduated from college (a fitting tribute to him, I think).  I graduated six months after he died, so it was a bittersweet day — May 17, 2003.  But I am eternally grateful for the gifts he gave me.  Grateful for the DNA I have from him, for my love of academia, the way my brain works.  I am grateful for the time I had with him, for the memories that I will try to never lose.

 

 

lost

Last week was a rough one.

I spent Wednesday in a daze.  I was exhausted (after a night out in NYC for work), I was dazed after the shocking and massively disappointing (for me) election results.  On Thursday, after some much-needed rest, I remember the feeling of utter despair settling into the pit of my stomach.  Unfathomable sadness.  Sadness that ran so deep, that felt so immediate, that not even tears helped alleviate it.

I’ve tried, sometimes successfully, sometimes not successfully, to understand what happened.  Why it happened.  How it all went south so fast.  Sometimes I feel calm.  But oftentimes, the panic creeps in and overwhelms me.

These feelings put some things in sharp relief.  How as people, we drift through life, and sometimes we are in touch with who we are, what we believe in, but more than not, we are not.  Who am I?  What do I stand for?  What am I willing to fight for? What compromises am I willing to make to be me?

I try — very hard — to learn from my failures. I don’t want them to break me.  Or define me.  But they can teach me.  Teach me how I want to be treated, teach me what I will allow and what I will not — teach me my limits but also how to push the boundaries and experience new things.

I hope very much that it doesn’t take another 37 years for a woman to be on the ballot for President.  I hope very much that the next time a woman runs, she wins.  Not because she’s a woman, but because she is great, because she is right, because she is the best choice.  I hope that everything my mother fought for, everything I try to fight for, everything that every progressive woman has fought for for years, decades, centuries … isn’t lost after one defeat.

I feel lost right now.  I feel lost, and overcome with sadness.  I feel afraid for the immediate future.  I believe in the greatness of my country, but I also wonder as to how someone like our current President-elect won an election as important and significant as the one he won.

I feel lost and I am grappling with how to move forward.  How to make better choices for myself, for my beliefs, for my future and the future of my country.

I feel lost.  And I very much want to change that sooner rather than later.

 

 

nasty woman

Eight years ago, at the very beginning of our relationship, I stood next to John in the back room of Kildare’s in Manayunk (close enough to touch, but not) and we watched Barack Obama ve elected President of the United States.

It was a seminal moment.  Emotional.  A huge step forward for our nation.

Today, I took my place in a  line that snaked out the door and around the side of the building and into the parking lot of my polling place at 7.08 am.  I stood for over an hour in the brisk November cold.  I stared at the plethora of political signs lining the walkway.  I was voter #100 (of the M-Z line).  I didn’t vote Party.  With my numb, fumbling fingers, I fed my ballot into the scanner.  And then I walked out — past the free coffee — got into my car, and cried.

I will be thirty-seven in a little over a month.  I remember being  child in the 1980′s and little girls dreaming of being the first female president.  I remember my mother’s first amazing female boss, Jeannette Finkel, and her red-headed daughter Sarah, who declared that she would be the first woman elected.

The experience of walking into that polling booth and filling in the circle next to Hillary Clinton was filled with the hope I feel for women.  For myself.  For equality.  It was overwhelming.  It meant more than I can articulate.

I didn’t think we’d have to wait this long to have a chance.  To have a voice.  To have support.  I didn’t think our country was so embedded with bigotry and misogyny.

It is.

At the end of this day, America will have elected a new President.  I don’t know if Hillary will win.  But I hope she does.  And I will be in New York City, far away from my husband and our dog.  But by some beautiful chance, my little brother will be in New York today as well.  So I will see him.

I hope that at midnight I can drink a glass of champagne and cry more emotional tears.  For having the chance to vote for a woman.  For voting for her.  And for watching her win.

 

moments in life

I chug green smoothies on my drive to the train station.

I’m never up early enough to drink it before flying out the door, my arms overflowing with keys, phone, wallet, lunch, kombucha, a scarf and coat, umbrella  … and also something absurdly random that is (of course) desperately necessary.

This morning, as I flew down Romansville toward the Thorndale train station, the fog coming in great puffs across the blackened road, I laughed at how much I concentrate on finishing my smoothie.  It’s a morning challenge for the ages.  In general, making the train is a morning challenge for the ages.  But I seem to do it, most mornings, against all odds.  I call that adulting.

Yesterday I slunk down to my bicycle (sitting innocently enough in our garage). I eyed it up. For what seems like forever, the fatigue has been overwhelming (it’s meds week) and my brain has been fuzzy, too full and unfocused.  I didn’t want to exercise.  I wanted to stay in pajamas, watching endless episodes of “Gilmore Girls.” (I’ve just begun watching them, and routinely wonder why I never watched them before … I am in love).  

I knew I would feel better.  But I was feeling agitated.  Fussy and unmotivated.  I didn’t want to listen to “Kitchen Confidential” (my current audible.com book). I began it because my husband loves it, and while it is highly enjoyable, I deal with restaurants daily at work and don’t always want to spend time in them for fun.  Especially the seedy underbelly that any lifer is intimately familiar with.

I’ve listened to “Hamilton” nearly exclusively since April.  And it’s great to work out to.  But I wanted a story, something to distract me from the blinking lights and the display slowly accumulating minutes and miles.  Usually, “Hamilton” is great for that.  It’s a story.  But it’s a story I’ve heard so many times recently, that I know it inside and out.  I zone out now when the inclines get tough.  I’m no longer distracted.

I love musical theatre — any musical theatre really — because it’s a story set to music.

When I first began listening to ‘Hamilton’ at work, a woman in my office was shocked and surprised I hadn’t seen it.  She laughed, said she got into musical theatre after seeing the show — but she couldn’t listen to the music before that.  It had no context.

I’m not like that.  My most favorite musicals — the West End version of “Chess” and “Hamilton” — are both musicals I have never seen.  But I don’t need to.  I can get lost in the story, in the music, without ever seeing an actress or actor perform a single song.  The art of musical theatre — sustaining a narrative through song — it’s beautiful and difficult to get right.  (I’ve seen some bad musical theatre).

I rode my bicycle to “Hamilton.”  It wasn’t a bad ride.  I did feel better afterwards.  And I got lost in the story all over again.

Septa is on strike.

Which means that after the Herculean effort that they put forward to get back to our regular schedule following the July pulling of the Silverliner cars — we’re right back where we were before.  And it’s even worse during rush hour at night.  Total chaos.

The 6.50am Great Valley Flier is a local train this morning.  Making every stop on the way to the city.  It’s supposed to be a “Flier”.  It’s not.  Running about 10 minutes late, and counting.

It means that tomorrow, I will have to drive to University City for my medicine, or I won’t get there in time.

I need the trains to be on time, and on schedule again.  Please.  Someone.  Somewhere.  This is excruciating.

 

 

choices and philosophy

Recently, I finished reading “American Philosophy: A Love Story.”  It was published on October 11 and was written by a friend of mine from high school.  I obviously pre-ordered it.

We’ve long since lost touch ~ that’s the way of things when you head off to college and begin living your own life.  But Facebook always brings people back together (sometimes whether we want to be connected or not) and now, we are connected on the internet and can glimpse into each other’s lives.

I have good and clear memories of our brief friendship in Wyomissing, Pennsylvania.  One night, after we’d gone out to dinner, we sat on bleachers in a neighborhood park, and while staring at a perfect sky filled with stars, John said to me, “The only thing that is constant is change.”

We were on the eve of college, both our young minds filled with the potential the future held.  He’d always been a philosopher ~ trying to make sense of chaos.  I’d chewed on that little idea for much longer than I ever intended.  I chew on it still.

I’d registered for a philosophy class my freshman year.  I bought Plato’s “The Republic” with absolute intimidation in my soul.  I didn’t finish that class.  Philosophy never really gripped me.   But I was young, and I hadn’t really faced down true pain and disappointment yet.

My childhood angst — if you could even call it that — was the angst of a child with parents who loved each other and loved her.  It was the baby angst of someone who had never known hardship.  A person who has never faced hardship could be forgiven for not having an interest in philosophy.

I cracked open the fresh hardcover book, and felt the weight of the paper that comprised the pages.  I looked at John’s photo on the back cover flap. He hadn’t changed since high school.  He looked exactly the same.  I started to read it standing up in the front hallway of my home.

It is an absolutely stunning book.  It snuck under my skin, filling my conscious and unconscious mind with questions, abstract ideas … thoughts and theories and more questions.  American philosophy, in my incredibly rudimentary understanding, is the quest to answer this question: Is Life Worth Living?  As I stare down my thirty-seventh birthday, this question seems much more interesting than it might have at eighteen.

As John writes about finding William Ernest Hocking’s library in New Hampshire, and the intellectual and spiritual journey that lead him on, he also teaches his reader about the foundations of American philosophy.  He teaches, but he also inspires his readers to learn more, to continue the quest for knowledge, and for answers.  For understanding.

There are a few things in my life that I studiously avoid sharing on this blog.  I’m sure there’s a good reason why, but I don’t really know what it is.  Maybe I’m ashamed.  Maybe not speaking about it makes it less real.  Maybe I’d like to forget.  But those things have probably informed more of my life than I’d like to admit.

My first (very brief) marriage broke me.  It changed me down to my DNA.  It devastated me because divorce devastated me.  It left me lost, and afraid, and alone and without any hope.  It made me question everything I’d ever been, everything I’d ever believed.  I lost myself after my divorce and it has taken me years to find myself again.  But out of that absolute desperation came my relationship with my husband.  With my best friend, the man who is the other half of my soul.  If the bad hadn’t happened, maybe the good wouldn’t have happened either.  So I have to settle into that, I have to figure out how to live with that.  Forever.

On January 25, 2015 John and I went to an open house.  We’d been toying with the idea of buying our first home.  And his job had finally made it a real possibility.  There were snow showers.  And as we sat in the car, reading our emails, my whole world fell apart again.

My mother’s cancer was back.  She would have to begin chemo again.  Maybe radiation.

I don’t remember all the details.  I remember John driving home to get Lucy and pack overnight bags.  I remember heading back to Chester County to see my parents.  To see my mother in person.  We stopped at a new townhouse community on the way ~ still in development. The next day, we put down a deposit.

I will never not associate our home — buying our house and moving down to Chester County — with my mother.  With the feeling of utter desolation that came when reading that email in the parking lot of a house we didn’t buy.  With the feeling of wanting to be closer as soon as possible.  And now, we are twenty-five minutes away (it’s 23! I hear them saying in my head).  We can be there if they need us.  I can see my mother all the time.  For as long as I can.  That feeling, of family and home, can’t be put into words.  Out of the most terrible things came beautiful things.  Like phoenix rising from ashes.

So when I picked up John’s memoir of his academic journey, but also his personal one, I began to understand why a person would dive into the abyss of philosophy.  To help heal wounds, to help restless minds settle, to help understand that which cannot be understood.  It not only comforted me, but it woke up a part of my brain that has long been lying dormant.  The part always thirsty for knowledge, for explanations, for questions without answers.

I told my husband (also John!) I needed to read the book again.  And then I needed to learn more about these people — men and women — who helped define American Philosophy.  He told me I should wait six months.  Let it sink into my brain, really ruminate on it.  Reach out to my friend if I felt so inclined.  He’s probably right.  (After all, his first major in college was philosophy).  My mind has been full for these past few weeks, full of questions, full of the history of my life. Full of the decisions I’ve made along the way.  Full of the things which brought me to this moment in time, this person I am.

And even now, tapping away on this blog post, I can’t begin to articulate everything that has happened since I opened that book.  But I know one thing for certain, and that is that I am grateful.

 

another person

When I was little, and my mother would tell us (my brother and I) stories, she would sometimes preface them by saying “I lived a whole life before the two of you came along!”

And she did.  To this day, her stories are some of my favorite childhood memories.  Listening to tales of picnics with Granfer Fred and ginger beer, sheep tracks and impending fog, icing sugar wells (that actually worked!) on birthday cakes in Malaya (it was Malaya then ~ when it was colonized and Englishmen took their families over for a different … better? … life).

As I’ve grown, I’ve come to understand her statement in other ways.  She was a full person before David and I.  A young girl, a teenager, a widow at twenty-two.  An emigrant; an English woman in foreign countries.  She has memories, visions in her head, so many things that we don’t know anything about.

To be fair, so does my father.  He lived lives before marrying my mother and having children.  College, being drafted during Vietnam, living in California.  I love listening to both of them remember their lives at the beginning.

I was thinking about this on Sunday night, as John and I sat on our deck with friends, watching the flames of our fire pit lick the sky.

I was a thousand people before John.  He was a thousand people before me.

I am so happy in my life with him.  So content to be us together.

I don’t think about my life before him very much.  But when I do, I drown in it a little bit.  I’ve been profiled at airports, labeled and addressed by the color of my skin.  I’ve been more afraid than I think fear exists in the United States.  I can’t erase those experiences.  I can’t forget they happened.  In the climate of our country right now, they are in my subconscious, restless and unhappy.  Bubbling under the surface.  Informing my thoughts and my concerns.

I was in South Africa in 2008.  I arrived in Johannesburg in January, a single white woman disembarking from a fifteen hour flight.  The air was thick and hot, unlike the bitter cold I’d left behind in New York.  I was disoriented, apprehensive.  I was afraid.

A man the color of tar approached me, his eyes large and dark.  He offered to walk me to my connecting flight to Durban.  I said yes, and then the fear began spreading from the knot in my stomach to the tips of my fingers.  Could I trust this person?  I didn’t know, and I felt very targeted.  Very exposed.  At the end of our interminably long walk from the international terminal to the domestic, he turned expectantly for a tip.  I had no South African rand. I fumbled in my wallet, my hands clammy.  I pulled out a ten dollar bill.  He snatched it gratefully.  American money, he told me, was very valuable.  And before I could say another word, he was gone.

I had so many moments like that during my six weeks there.  So many moments when I felt afraid for no reason.  When I felt very white.  I even had many moments when I was called white.  It became my name.

When we were robbed, I remember the police watching us with boredom in their eyes.  Just more white people who had been duped.

I grew up in suburban America.  I didn’t really feel racism until I started working in the restaurant business.  When kitchen staff said crude things, pushed buttons to try to make you crack.  When I learned to develop a thick skin, or I wouldn’t make it.

I still don’t understand racism.  I don’t understand why people think something like skin color makes us different.  We’re all people.  Some of us are good, some of us are bad, some of us are charming and some of us are grumpy.  Some of us work hard, some of us rely on others.  But racism runs as deep as a knife wound across our country, bleeding the blood of everyone, bleeding hate.

Maybe Colin Kaepernick didn’t fully understand what he started.  But he began a conversation.  And while it’s a tough one, and it’s one that no one seems to want to have (it’s more about who can speak louder sometimes) ~ we need to at least try.  We need to attempt to staunch the flow of racism running through America.

We need to at least try.

 

adulting

Sometimes, I have a hard time wrapping my brain around the fact that I’m 36, I own a home, I go to work on time like a responsible adult, pay my bills, somehow manage to feed myself and keep Lucy alive and well in the process.  Mind-blowing.

When I was younger, the transition from child to adult terrified me.  Seriously.  I didn’t understand how people did it.  And I knew they did it ~ obviously.  But it seemed like an impossible task.  I didn’t ever want to not be able to go home, and curl up on my parent’s couch, and eat dinner and be okay.

I stumbled a lot in my twenties.  Probably because a part of me really didn’t understand how to transition into being an adult (case in point: I had jobs, I earned money, but I think my dad always paid my bills. So my understanding of earning in order to support myself –very lacking).  I didn’t really understand money and responsibility until it was a little bit too late.

And now, with my mistakes burned into my subconscious, I don’t remember how to not be an adult.  How to not worry about bills, and mortgages and laundry and my job.  I think I’ve forgotten -a little bit – how to dream.  How to take risks.

And this, I believe, is why the sadness comes.

I feel trapped by obligations.  Trapped by fear.  Unable to jump off a cliff and believe I will fly.

Adulting is hard work.  And sometimes, not very rewarding work.  There’s a lot of guilt in adulthood ~ things you wouldn’t have thought twice about at age thirteen.  There are consequences that mummy & daddy can’t shield you from.  There are challenges — like MS — that come raging out of nowhere to drag you down and drown you.

I actually think about this stuff a lot.

Maybe because John and I finally own a home.  And being an adult feels really real.  For six years, we lived in a one bedroom apartment, perpetually being treated like children.  And then suddenly, we were equal to all our neighbors.  We had furniture in every room. We bought area rugs (I mean … it doesn’t get much more adult than area rugs).

When I sit in my office, tapping away on my computer, and I can hear the ambient neighborhood sounds of car engines, and children playing, and lawn mowers ~ it feels so immediate.  And I also think about how much longer it took John and I to get here than most people.

I guess we just needed time to figure out what we wanted.  Maybe other people knew much more quickly than we did.  But we both enjoyed late nights in restaurants, college friends and irresponsibility more than most.  I suppose.

I can say that it feels good to be where we are.  Even if work sucks the life out of me sometimes, and MS makes everything feel like moving under water.  I like that we have our own space, and our pantry is filled with food we like.  That we get to make the choices.  We are in charge.  We worked hard to get here, saving and paying debt.  We worked hard and we were able to make choices we were happy with.  And that makes me happy.

Maybe it took us longer to get to grips with adulting.  But we’ve done it.  And it isn’t all bad.

having MS

Sometimes, the sadness is overwhelming.

I feel surrounded by indifference, by dullness.  By fatigue.

It isn’t all the time, but when it happens it is palpable.  A living, breathing thing pulsating in my consciousness.  The unhappiness, the frustration, the anger.  The fatigue.

The weather broke a little bit last week and I felt like I could breath again, after months of feeling suffocated.  And then the heat came back with a vengeance, raging and thick and unbearable.  I felt broken, defeated.  Ready to give up.

Last year, one of my cousin’s dearest friends – a person she considered a brother – committed suicide.  Their friends launched a successful Go Fund Me (or it’s equivalent) in order to fly Alison & Xennon home to the UK from Japan to be there for his funeral.  I’d seen them both mere weeks earlier, when we’d all been in the UK for our Granny’s memorial service.  Our Granny, who lived 93 full years.  At the time, Alison told us stories of Ewan visiting she and Xennon in Japan, getting lost on New Year’s Eve and locked in a rail station.  Funny, endearing stories.  About a person who filled her life.

And six weeks later, he jumped in front of a train.  And she and Xennon went back to England for the second time in less than two months.  For another memorial service.

I’m not that sad.

Even when I’m painfully sad, I’m not that sad. But I can understand it.  I can understand how it consumes you, how it eats away at your insides until you don’t see any alternative other than ending everything.  Ending the pain, but even more unbearable, the indifference, the disinterest.

As a society, we don’t talk about depression.  We don’t talk about it because of the stigma. If people see that weakness, it will forever inform their opinion of you. And we can’t allow that to happen.

So instead, people drown in the darkness, without a lifeline.  Without hope.

I’m pretty sure that my maternal grandfather had horrible depression.  I’m pretty sure depression runs just under the surface of my mother’s entire family.  Maybe it’s because we all think too much, our brains function too well.  They say ignorance is bliss, yes?  We aren’t ignorant.

But we don’t talk about it.  And if anything is even mentioned, it’s in hushed voices, in quiet conversations that not everyone is privy to.  There are too many consequences of depression.

I don’t feel sad all the time.  It comes in waves, and it consumes me, and then I find my way out again.  The weather breaks, the pressure is released.  When I’m in it’s grasp, when I’m at the bottom of the well — those are the hardest moments.  Hard to remember that it will get better, hard to remember that time heals everything.

This morning, I’m sitting in my office, surrounded by my beautiful things; objects imbued with such love and significance.  I know — intellectually — that my life is good. I know that depression comes interwoven with my disease and that the weather is wreaking havoc with  my body.  But so many external things make everything feel bad.  Unbearably hard.  And then, all I want to do is sleep.

 

 

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.