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.

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.