conundrums

Having MS.

It’s sort of like everything all the time, and nothing at all.

I don’t really know how to better describe it.  How it affects everything, and is always on my mind, but at the same time isn’t that important at all.

When I talk about my MS, I usually feel like it’s a throwaway comment ~ not that big a deal, just the norm.  But then, halfway through the words coming out of my mouth, I realize (usually from the changing facial expression of the person I’m talking to) that perhaps, my comments are a little more jarring to them.

I guess it’s like …. nope.  I can’t think of anything that it might be like.  It’s just … my baseline, my reality.  I don’t want sympathy.  I don’t want pity.  But I also don’t know how to exist without it anymore.  It’s such a huge part of my whole life.  It influences everything I do, everything I wear, every decision I make.  I am no longer myself without the MS.  I am MS, it’s become part of my framework.

I don’t bring it up on purpose … and what I mean by that is, it’s so much a part of every aspect of my life, I don’t know how to exist without acknowledging it.  Yes.  Maybe that’s it.

I guess my throwaway bio on Instagram and Twitter are the truest of true … I am an MS warrior — BUT, I’m so much more than that.  Sometimes maybe, it’s hard to remember that there’s so much more, when I lead with such a wham bang punch.

the watch

My husband bought me an Apple Watch for my birthday back in December.  We had to order it, because they didn’t have the size/color I wanted, so I finally received it a few days before the new year.  Apple products have some of the best packaging, and I remember distinctly watching its delivery status online (I had to be home to sign for it) and when it arrived, carrying it like precious jewels or paper-thin crystal up the stairs to my kitchen to unwrap it at the island.  Every moment was breath-taking.  It was so beautiful.

I was so insanely in love with it within minutes that I promptly told my husband (who had a watch he very much-loved) that he needed to get an Apple Watch immediately.  And so, despite some grumbling, he did.

And we have both been addicted since this year began.  I have missed only two days of completing my circles (Move, Exercise and Stand) ~ the first was a sync problem when I got a new phone (February 25th) and the second was this past Sunday, when I was certain that my fatigue was going to overrun my life.  I am sad about both days (I am very competitive) but what is even more important is how much the watch has changed our lives.

Hubs, who was a college athlete but hated working out, has begun riding a stationary bike every day in our garage (we do this together since we have 2 bikes …. see my previous post my bike is a very, very, very nice bike).  Sometimes we trail ride (although this is challenging on a number of fronts because of my absurd fatigue – thank you MS – and our inability make decisions in a timely fashion to avoid the heat).  I have found – in the six months of having my watch – that I’ve made more progress than I made all last year while riding the bike, probably because now the watch motivates me.  I can walk away from my phone when Lucy and I go for walks, because calls and texts (and email!) all pop up on my watch.  Hurrah!  This past Sunday I tried to leave my watch on the charger all day … but JUST.COULDN’T.DO.IT.  So I settled for closing my Stand rings and trying not to feel too sad about my Exercise and Move (since I’d made the decision to give my body a rest).

It is one of my favorite things.

In the four and half years I’ve had MS, I’ve learned so many things about keeping my disease under control.  It isn’t just about medicine, and it isn’t just about food and exercise.  It’s about all of that, and having faith in the decisions you are making, and waking up every day ready to give it your all once again.  The mornings are tough for me — my body usually hurts, and if I’m lucky I wasn’t up several times in the night to use the bathroom.  But once I’m vertical, it’s about making the best choices I can.  This watch has helped me do that, day after day, when I’m tired, when I’m sad, when I just don’t feel like it.

As John gears up to begin his new job next week by having drinks and dinner with some new co-workers, I’m at home, trying to find my direction.  And as silly as it sounds, my direction has begun to begin with my Watch.  Get up.  Move around.  Get sweaty.  I’ve learned that those things are invaluable to feeling better, feeling focused and motivated.

So, this is just a little love note to my Apple Watch, and also to my husband, for getting it for me in the first place.  He always seems to have an uncanny ability to get me things that fill my life up with happiness and joy.

 

 

time rolls by

It’s funny that it’s already April 21st (a day which deserves recognition as the birthday of a monarch who has done more for a country but also for women’s equality, than anyone will soon do again).

Last weekend, we hosted Easter for the fourth or fifth time — both sets of parents, plus my dearest friend (I am not sure how I have been so lucky to have a friend like her) and her significant other.  I didn’t think it would feel so stressful, but it did.  And while I think the majority of people in attendance had a good time, it always weighs on you when you believe you failed someone.

On Sunday, we leave for NIH.

It sits on my heart and my lungs, it weighs on my arms and legs.  It stymies my mind.  We spent a week there sixteen months ago and John had major surgery.  And next Wednesday, he has it again.  For the same issue. The past few days his ear and jaw have ached, and the pain — perhaps somewhat psychosomatic — has extended down his arms, into his joints.  Surgery and anesthesia are overwhelmingly complicated.  They leave you feeling powerless and adrift.

I woke up at 5a this morning.  I had meds in the city and I knew the weather was promising to be brutal (it did not disappoint).  I worried about rush hour and wanted to get a head start.  The grayness of night still hung over the sky as I turned my seat heater on and set off on the drive.

Five hours later I was home.  I’d made it by the skin of my teeth (God bless the poor man operating the parking lot ticket machine — I don’t believe I was the epitome of patience and kindness) and then, post-meds, after grabbing a soy chai latte from Starbucks (no longer a regular part of my unemployed life) I set off home and enjoyed a much better drive.  Lucy was waiting, her Kong gripped in her mouth, her body twisting into strange contortions of what I can only believe was happiness.  I absent-mindedly patted her head.  I staggered upstairs.  My brain was full of fog, my limbs felt heavier than anything I’d ever lifted.  Such are meds days.

My husband has always been the example I strived to follow.  He lives life and no one knows that his body is ravaged by a disease the doctors cannot control.  I think of that, hold onto it, when I am feeling petulant and weak in my struggle with M.S.

Life is not easy.  It certainly is not fair.  My email contained a note from my mother – the status of her recent round of chemo and her health.  It wasn’t bad.  But it certainly wasn’t sunshine and roses.  Cancer sucks.  Full stop.  I think of that when I am feeling utterly sorry for myself and my monthly infusions and complications of medication.  When my eyesight dips in and out and I break a toe because I can’t fully feel my feet.  When I find phantom bruises — deep and dark, purple midnight blue — scattered across my limbs with no explanation.  When I can’t remember the day before because of the heat, the stress, the fatigue.

Lately I’ve put my tears on the shelf.  My husband, who has always been the strength and steadiness in our relationship, is faltering under the crushing pressure.  Maybe I shouldn’t have left my job, maybe I should have made different decisions.  Maybe, maybe, maybe.  What if.  I am consumed by the worries of how I will get through the next few weeks when all that should matter is him.

I drove to get sushi for dinner – our first since giving it up for Lent.  The sky was rain-washed, the sun a tangerine orange sinking gracefully in the sky.  The greens were green, the blues were blue. The air felt fresh and full of life.  The cows grazed lazily in the fields.  Jim Croce’s “I’ve Got a Name” filled my car as it popped up on my iPhone’s random play.

I smiled.  I sang along.  I held tightly to the idea of this moment, this snap shot of why we moved here, why I left my job … what our dreams were and what they remain.  I thought of how much we’d been through, how much we have left to face.  I thought of my husband, working out diligently in our garage after a long day of work.

Life is neither fair nor easy.  Life is a constant onslaught of things we believe we are incapable of overcoming.  And yet … we do.  We hold onto each other in the darkness, finding comfort in the people we love, the warm, strong touch of their hands.  We breath deeply.  We pray.  We believe.

creature comforts

On Wednesday my husband bought me three Caramello bars.

I adore Caramello bars.  I compulsively buy them every time I go to a Wawa (or heaven-forbid another gas station market). I cannot go to CVS without detouring to the candy aisle to check for them.  If I don’t eat them, I stash them in the freezer.  Y’know.  Just in case.

I was feeling a little blue on Wednesday.  It’s the middle of March, so it’s right on time.  But it gets me every year because I am convinced that it will be better.  It never is.

Tuesday’s ‘blizzard’ was so disappointing, and my day was so … far from what I’d imagined … that Wednesday felt like a hangover.  The ‘ice snow’ was piled inconveniently around the entire neighborhood, making a walk with Lucy like climbing Everest and moving my car basically a no-go  Not that I had an incredibly exciting destination.  I didn’t.  But a chai tea latte on a snow squall day can cheer up anyone.  And it wasn’t even an option.

Bad days are always peppered in with good days — regardless of my work status.  I think everyone — if they were being honest — could agree that not every day dawns full of sunshine and roses.  It’s really about how we choose to deal with the obstacles.

I’m getting better, but I’m not necessarily good.

Some of the things I’m non-negotiable about in order to get myself motivated ~

I always get up when John takes Lucy out for her morning walk.  No matter what, I make us smoothies.  I’m pretty Nazi-ish about green smoothies.  Sometimes all John wants on the weekend is a big breakfast, and instead I present him with a bright green smoothie, and multi-vitamins.  He’s a champ though, and drinks them every day.

I also made a commitment last March to ride my bike.  And now, I ride pretty much every day.  Even when I procrastinate until 4pm, I manage to slink down, climb on and ride.  And inevitably, I feel better.  All that talk about endorphins and exercise?  Yeah, it’s pretty true.  Exercise works like a charm every time to boost my spirits.

I’m also a little obsessive about my water intake.  I try really hard to drink about 90 ounces of water a day.  First, it’s not easy.  Second, you have to pee a.lot.  But again, it always ends up being worth it.  I feel better, I don’t stuff junk food in my face all day, and my skin looks amazing (haha!).

I think one of the most important things is recognizing when the blues are coming.  Sometimes I’m in them before I realize.  But because I am such a creature of habit, I’ve usually already had my green smoothie, drunk a ton of water, and either ridden the bike or had it planned.  Doing these things are a small help in keeping my life on an even keel.  Because it’s not just about the sadness, it’s also about the M.S.  The way it wreaks havoc with your life.  The way you are up one minute and down the next.

I’m really really hoping that the weather figures itself out and we progress slowly toward April and warmer temperatures.  I love the winter and the snow.  But Mother Nature sure has been ornery about it this year.  I’m ready to feel steady again.

 

 

 

choosing tysabri

I’ve been diagnosed with MS for about three and a half years.  Who knows how long I’ve had it ~ they don’t know what causes it, and I was first tested at a very young age.  MS is a tough diagnosis, and they didn’t have enough when I was twelve.  But I remember getting the diagnosis at thirty-three and instead of being immediately scared, I was relieved that finally an explanation existed for how I felt.

After that, i got scared.  After breaking my foot and taking forever to heal, and then slowly losing the ability to walk any distance, or see anything clearly.  I got scared then.  I was on four different medicines before my doctor convinced me to try Tysabri.  We sat in an office for hours, debating the pros and cons, asking a myriad of (what seemed like) trivial questions. Dissecting all the options. Addressing the fears. It was probably the moment that I decided to trust this man who’d always seemed somewhere else, distracted, too in his head.  Who’d stared intently at a screen and told me I was a tough case.  This man who said he’d tell his wife to try Tysabri, despite all the possible side effects.  That it was my best — my only, really — option.  We’d tried everything else.  Nothing else worked.

There’s a difference between doing something because you want to, and doing it because you have to.  What I’ve found, across these years, is that understanding why I have to, and then learning why I would want to, is the best formula for me.  In 2012, if you’d told me that I should be a raw vegan who never drank wine and who went to sleep at 8.30 at night, I would have laughed out loud and then gotten internally angry.  Truth.

I’m not a raw vegan now, and I do drink wine.  But whew, the difference between who I was then, and who I am now — worlds apart.  Today I can say, very honestly and without a tinge of irony, that some of my favorite foods include spiralized zucchini, green smoothies, kombucha, and raspberries (to be fair, raspberries have always been my favorite).  A good day for me begins with a green smoothie, includes kombucha at lunch and ends with a sweaty bike ride on my stationary bike, wild cherry flavored sparkling water, and a dinner full of veggies.  Zucchini with Portobello is a favorite.  I also love peppers.  Mashed cauliflower is delish.

I’m pretty sure my 2012 self would look at my 2016 self and roll her eyes.  She would think this person I am now is being absurd, and that cheese and red meat never killed anyone.  That life is meant to be lived and enjoyed.  Wine is good for you.

But the thing that has inherently changed is that my life feels infinitely better when I live clean.  When I hit goals on my bicycle, or discover a new recipe full of veggies that tastes good ~ those are great moments.  I love my routine, the rhythm of this new life — the way things feel.  But I wouldn’t have done it by myself and I know that.  MS made me do it ~ MS made me appreciate taking care of myself.  MS helped me see the everyday benefits of exercise and hydration and proper sleep.

In three days, John and I are heading to Iceland for his birthday.  We booked the flights one night in November watching “The Secret Life of Walter Mitty,”  As the trip has grown closer, we’ve gotten more and more excited.  I just booked our tickets for the Blue Lagoon on his birthday.  We’ve planned our daily excursions, and our wish list.  We have hiking poles, waterproof hiking sneakers, lightweight packs and rain coats.  We have awesome sunglasses and lenses for our camera.  We cleared out our iPhones over the weekend so we both have tons of storage.  We’re ready.

And if I hadn’t listened to my doctor, and then systematically embraced my new life limits, we wouldn’t be going to Iceland.  Because I wouldn’t be able to walk more than the length of one city block.  I wouldn’t be able to climb stairs without holding on for dear life.  We wouldn’t have been able to go to Venice this past February, and we certainly wouldn’t have booked another trip to Jackson Hole for September.

Tysabri is a little scary.  There are instances of patients contracting a fatal brain infection.  It messes with your organs.  I have so much blood drawn on a regular basis, it would seem strange to people who don’t have to deal with an incurable disease.  But I’m probably healthier now than I’ve ever been.  That’s the craziness of life.

When I was first diagnosed, John did a lot of reading about MS and I did none.  I thought ~ yeah, I deal with it personally every day, I don’t need a thousand other people telling me their struggles and sad stories.  My numb feet and spotty vision are good enough for me.  But John read people’s accounts of how they dealt with their disease.  And I remember, very clearly, a story about a woman who was diagnosed and now swims every day, eats super clean and proclaimed that she was healthier now than she’d ever been.  At the time, I thought that was ridiculous.  Now, it makes sense.

This past weekend, my little brother did a 36-mile hike in Banff Canada.  I see that, and I don’t get sad or angry.  i get motivated.  I can do that.  Yeah, I have MS.  That’s a bummer.  But it doesn’t change everything.  It just pushes you to look at life in a different way.

 

 

home

John and I have lived in our house for eight months.  And it’s just beginning to feel like home.

At first, it felt overwhelmingly big — we went from a one bedroom apartment to a three-story townhouse, so that was to be expected.  And everything felt new, and as though it belonged to someone else.  I felt awkward in our kitchen, and disinclined to cook because everything felt so unfamiliar.

Slowly, as the months slipped by, and the leaves changed from vibrant green to reds and yellows, and then became bare branches, we’ve settled in.  Work commutes have become routine, we’ve found grocery stores and know where products are — we’ve found homes for all our little nick knacks.  I don’t feel strange using our oven or our stove.  It feels really nice.

The thing about change is that it’s ever-present, and I look to find routine and familiarity everywhere because I find comfort in habits.  I guess, in some ways, that’s a little exhausting.

When John and I were talking about buying a house, and where we wanted to live, we spoke about Chester County as a far off dream for another time.  As though it couldn’t happen.  And then, somehow, we made the decision that it was really the only place we wanted to choose permanently.  And we made sacrifices (I mean, does anyone like getting up habitually before 6am to then catch a train for an hour plus ride to get to work? …. I’m pretty sure no one ‘likes’ it). 

The thing about moving somewhere as an adult is that there aren’t a lot of built-in ways to start a new social life, etc.  As a kid, you have school and sports and are surrounded by people your own age with similar interests (well, some of them have similar interests).  As an adult, it’s harder to find the pockets of people who are on the same level as you.  And it’s even harder to make friends, because so many people already have a group of friends they are comfortable with.  It’s funny to think of working on one’s social life, and taking risks but that’s a little like what John and I have done recently.  And it’s been a really awesome payback.

John and I are very much creatures of habit, with things we like, things we don’t and routines. But we’ve been going out and trying new things with new friends down in Chester County, and somehow, it’s made me feel less like an outsider, and more like Chester County is home.

And it’s made us feel motivated to get back to all the goals we’ve had in the past — of practicing our instruments, and using our Rosetta Stone and getting in shape — kayaking and biking and hiking and … well, so many things.  It feels amazingly good to be settled.  In a place of our own.  In our home.

 

 

another life

I bought a car this week.

It’s funny because it brought a lot of things to mind. Years ago – back when my life was very dark, and hopeless and felt eternally bleak – I made a list. I can’t find it now, but I remember fairly clearly what was on it. I remember where I was when I wrote it. I remember what motivated me to put my dreams on paper.

I’d thought that I had direction.  I thought I’d found a partner to struggle through life with, and together we would accomplish things.  I’d made moves (both literally and figuratively) to advance our lives.  And then — suddenly and without a lot of warning — everything crashed down around me.  My life as I’d known it, as I’d planned it, ceased to be.  And I was left, alone, with massive amounts of debt — no direction, no partner, no life plan.  Everything gone.

I moved back in with my parents at the age of 28 — something I’d vowed I would never do.  I went back to waitressing after struggling so hard to get out.  I spent more time than anyone should ever spend on the phone with my credit card providers, the landlord of my abandoned apartment in Chicago — groveling and apologizing and feeling more vulnerable and less valuable than anything I could articulate.  Because that’s something that we all turn a blind eye to — the unquantifiable things.  The shame and the humiliation — the feelings of defeat, of loss. Of failure. The fact that when you make such a huge error — and you don’t see it at first — you lose all faith in yourself.  You don’t trust anything you feel, and it’s confusing and disorienting.  And indescribably sad.

Back then, as I scratched and clawed my way out of the despair, I made a list.  I wanted something solid to refer back to, to reference when I again began to lose my way.  It wasn’t a long list, and it didn’t have much focus.  Except that it defined the life I hoped to live one day.  It motivated me to put money in savings every week, and open an IRA.  It made sacrificing on spending easier because there was an end goal.

I wanted to get certified as a paralegal.  I looked into courses at West Chester University.  I ended up taking my LSATs and applying to law school.  I got in, I got wait-listed, I got denied.  I was offered a partial scholarship.  I didn’t go.  Instead I took a risk on my boss and his restaurant company.  And that’s where I’m at now — six years in, running a growing business.  Three restaurants open, two in development — more on the way.  But I’m not a waitress anymore.  Thank God for that.

I wanted to own a townhouse.  I have always had a love for townhomes — I don’t know why.  I just think they are divine.  And I had this strange, dream-like vision of being a successful career woman living in a neat townhouse.  I lived with my parents for a little over a year.  And then John and I moved into a one bedroom apartment on the first floor of our landlord’s house.  We struggled to pay rent for about six months.  We could barely buy groceries.  And we lived there for six years.  And our landlords became our friends.  And then, last summer, we bought a townhouse.  A brand new, we-picked-everything-in-it-townhouse.  And I come home at night, after an hour commute on the train, after running a business all day — to my perfect townhouse.

I wanted a dog.  A real dog, a dog who went running with me and curled up on the couch.  And in the first few days of 2012, John and I brought home Lucy.  And until the MS, she went running with me every day.  And when she’s feeling very generous, she curls up on the couch with her dad & me.  And she is utter, complete, ridiculous perfection.  She is my protector, and my child.  She is a diva and a love bug.  She is everything rolled into one.  I don’t know how John and I existed without her.

I wanted to drive a Mini Cooper.  And I did.  I drove a black and gold Mini Cooper named Rooney, which I bought for my 30th birthday.  And I owned a red and white Mini Cooper named Junebug.  And she was beautiful.

There were other things on the list — things I haven’t done yet.  I haven’t learned to speak Spanish. And I haven’t published anything.  And I haven’t recorded a song.  I might never do those things.  But dreams are just that — dreams.  And they keep me motivated when the going gets tough.

I haven’t achieved all the physical things I dreamed of, either — MS is a bitch like that.  But i ran Broad Street before I was diagnosed, and nothing can ever take that away.  And I feel blessed that I did it — even though I’ll never run a half marathon, or compete in a triathlon.  Or climb mountain peaks like my brother.  Or do a myriad of other things.

But back to the car that I bought this week.

John and I bought a Range Rover.  Even typing that feels absurd and makes me giggle.  I mean — do normal people buy Range Rovers?  Six years ago we were eating dinners made of discount pasta (yes, discount pasta – something already absurdly inexpensive) and shaking under the blankets rather than turning the heat on.

It’s sort of insane.  No — it actually is insane.  Life is not easy — I promise you, most people can attest to that. Life does not cut you breaks, or help you out when you’re having a bad day.  Life is brutal and unforgiving and relentless.  Life tosses MS into the mix right when you think you’re getting on your feet.  Life is like that.  

And yet, despite all that — despite all the things that seemed to forever be going wrong — somehow John and I have ended up here.  And it isn’t by chance.  It is because of hard work, and sacrifice, and making choices.  It’s because when things got hard, we held onto each other and buckled down.

I feel really proud of us.  And when we bought the Range Rover — whom I have named Hazel despite all the raised eyebrows — it felt like the ultimate validation of our hard work.  Not only were we able to buy a house, and furnish it (woof! that’s a tall order when you go from a one bedroom apartment to a three-story townhouse) but we turned around and bought a very nice SUV.

*****

I met John the day before my birthday.  He walked in the front doors of the restaurant he managed — a restaurant I’d waited tables at — and I knew.  I don’t know what I knew — I just knew more than anything, that there was something about him.  I was still wrapped up in another thing but John filled my head.  His smile and how genuine he was, the blue of his shirt and the twinkle in his eyes.  I think we both knew that God had sent us to each other (with Jennie’s help, of course) and six months later, when circumstances were better, we fell into each other.  I was a broken mess, and he scooped me up with his strong, gentle hands, and he helped to heal me.  He helped me find my faith again.

Our journey hasn’t been easy.  On so many levels.  It makes me laugh, to be honest.

But even when things have been excruciating, I have never doubted for a moment that he was there, my strength and my soul and my heartbeat.  And as we’ve struggled and succeeded, and struggled again, I’ve found peace within myself.  I’ve laid so many demons to rest.

So when we bought that car this week — that absurd, luxurious, beautiful car — it reminded me of the journey.  It reminded me of the list, and the dreams that all felt so unattainable.  And maybe we crash again.  Maybe things get hard again.  But they aren’t hard right now.  And I know that no matter what, I have John by my side, holding my hand, making me laugh, wiping away my tears.  And the gratitude for all of it — for the shitty noodles and the freezing cold nights and the sacrifices — as well as the blessings of Lucy, and our home and our groceries ….  Well, all of it is so crystal clear and near the surface of my conscience that I am drowning in love and thankfulness.

lessons

I am not quite sure how it all happened, but we have found ourselves working with a brand consultant (for lack of a better term) at work for the past few weeks.

I won’ t lie – I wasn’t against the idea, but I certainly wasn’t overly enthused either.  However —  it’s been sort of eye opening. Because it hasn’t been about branding at all. It’s been about human sociology – human nature and human behavior. It’s wild. Lots of talk about the limbic brain and gut feelings, culture and tribe-mentality. Without even realizing it we are all  gelling and feeling puffed up with this idea that what we do is different and special. Something we are wickedly proud of building and being part of.

It’s actually bizarrely good timing for my mental health. It hasn’t been an easy six weeks and I have felt on the verge of giving up. Hopeless and lost and frustrated and … Stuck. And then – like a gift wrapped in happiness – I began to look at everything a little differently, and suddenly nothing felt quite as bad.

Life comes in waves – that’s how my brain has made it make sense to me – and there are peaks and valleys. Sometimes, when the valley is low and dark, it feels like the peak will never come again. And then it somehow sneaks up on you. And the depths of despair that had been drowning you feel faraway and distant. I like to be grateful for the valleys because they help me appreciate the peaks so much more. I won’t lie – I don’t always remember to be grateful. Sometimes I’m too distracted by feeling crappy.

But in the end, nothing is as bad as it first seems. And that’s a blessing.

blue

Depression is an odd thing.

I feel as though it sneaks up on you — you are going, and going, and going, not stopping to breathe, just trying to keep your head above water.  And then somehow, at some unknown moment, it consumes you.  It grips your soul, and suddenly, you are drowning.

It’s also surreal.  This feeling of hopelessness, overwhelming fatigue — disinterest in life and the ensuing sadness and frustration at feeling so disconnected.  It’s also funny how well people can cope — hide — their overwhelming darkness.  How you can smile, and function — get done what needs to get done — without any feeling of purpose or accomplishment.

Anyone who has ever felt depressed understands its nuances.  Understands its insidiousness.  Understands its inky darkness.

I’ve been here before.  It was a long time ago, in a different life.  But I know this place, this painful numbness.

When I was younger I had a painful fear of the transition from school to adulthood.  I can’t remember exactly what i was so afraid of, but I remember being paralyzed with fear.  I didn’t know how I was going to ‘grow up.’  I completely understood that everyone seemed to do it — I just didn’t understand how.  I don’t know why this was so terrifying to me.  But it was.  I might not clearly recall the details of my fear, but I certainly remember the feeling.

I think part of the reason that I ended up in restaurants was this fear.  I was afraid to pursue my dream of acting, and to stay young – to stay a child – I stayed in restaurants.  I waited tables and hid in the haze of serving and the lifestyle of the hospitality industry.  And then, without even realizing it, I ‘grew up.’  For six years I grew into adulthood by getting to work on time, learning accounting, and figuring out how to run a business with little to no guidance.  I learned to trust myself, trust my instincts, trust my brain.  I grew from a shy, scared little girl into a strong capable woman.

And becoming strong and capable has led me to again feel overwhelming depressed.

Life is funny that way, y’know?

I am looking forward into 2016, and the future of life — our first full year in our house, our trip to Italy, our trip to Iceland.  I’ve thought about how we’ve gotten here, the hard work and the sacrifices and the mistakes we’ve made along the way.  I’ve thought about maintaining our life, and the things we need to do to accomplish that.

And I know, without a doubt in my mind, that I cannot fulfill my half of the equation.  I cannot keep doing what I’m doing, day-in and day-out without support or recognition or gratitude.  I cannot keep doing what I’m doing when no one respects me, respects my time or respects my contributions.  I know, in the depths of my heart, that I have to make a change.  Or I will drown in this sadness, I will drown in this hopelessness.

thoughts from The Palm

I remember when John first told me he had MEN Type 1.  I remember it very clearly … And not clearly at all.  Memory is strange that way.

We were lying on his bed in the apartment he lived in when we met, facing each other.  It was bright, because all the lights were on. I don’t know how we’d gotten there. I don’t remember what preceded it. But I remember him talking to me in a clear, calm voice. Explaining in the best way he knew how what his disease was – how it affected his life.

I can say now – seven years later, marriage vows taken, MS faced — I had no comprehension of his disease until yesterday.

I stood in ICU, nearly delirious with fatigue – nearly uncomprehending from the pressure of surgery and hospitals and well, reality — and his surgeon drew me a diagram on a dry erase board and explained things in a way I understood.  I think I will forever be in love with her for that — that, and she loves the restaurant scene in Philadelphia.  (Plus, she seems to perpetually be in heels, and that just deserves respect!).

As I have mentioned – probably more times than necessary – John and I have been together for about seven and a half years. Every year he’s spent a week at NIH (National Institutes of Health in Washington DC) where his doctors have monitored his disease, any changes, any progressions. I’ve stayed at home. Watched ‘Grey’s Anatomy’ live, gone to dinner with my girlfriends … Made him feel bad for leaving me alone.

John is my whole world. He is the reason I am strong every day – the reason I schlep to Penn for my meds with a smile, and fight for normalcy.  He is the happiness in my life, the voice in my darkness, the light at the end of every tunnel. He is reason and spontaneity and comfort all rolled into one. I know his breath in the stillness of night, his smell, his warmth. I do not ever want to know life without him. Because I already have – and it’s not what life is now.

I think a lot about our bedroom right now. Not in an amorous way. I’m not that girl. But because I yearn for its comforts, its quietness – the sound of Lucy’s snuffles in the night. As I ride the subway to the hospital every day, and collapse into bed at night, my mind is filled with memories of this disease, memories of things he has told me and I didn’t fully register.

I remember tears falling slowly, one by one, as he talked about MEN.  I was trying to be strong, but my heart was so full of love for this man, and everything was so new, and i couldn’t hide that this news was devastating.  But as time passed … we moved in together, we traveled to Wyoming, we adopted Lucy …  it faded — it became part of our dialog but not actually part of our life.

All that changed in October.  We weren’t anticipating it.  But he drove down for a day trip, for some tests to be run, for a study he had joined to scan his body.  And he came home with the news.  He would need surgery.  Sooner rather than later.

MEN Type 1 affects the endocrine system.  It’s a genetic disease (John shares the disease with his father and would have a 50% chance of sharing it with any biological children he might have).  It manifests itself in a myriad of ways — many people are mis-diagnosed with a symptom of MEN, and not MEN itself.

The scan told his doctors that he needed surgery, and it needed to happen right away.  My husband is incredibly strong, and would deny it today, but the heaviness of the news weighed on him, it darkened the words he spoke as he told me about it.  It was evident in the lines around his eyes, the set of his mouth.

I felt the heaviness but I didn’t realize it’s weight until the surgeon came to speak with me in the waiting room — much earlier than I had anticipated — and told me that things had gone well.  He smiled — which seemed insignificant to me at the time — but my father-in-law said afterwards he didn’t recall if he’d ever seen that doctor smile before.

I know now what MEN Type 1 means.  I know that it will never stop being part of my life, of my husband’s life.  I will become more familiar with NIH than I ever imagined.  But I am grateful for NIH, for the study he is part of, for the doctors who examine him and keep him safe.  I understand now — more than I ever thought I would — what this disease is, what it means, how it will continue to silently ravage my husband’s body.

I sit and I type and my eyelids droop from fatigue and I miss my husband by my side.  And I finally understand.