rise up

John and I arrived as dusk was settling in on Sunday.  First, we checked me into the Family Lodge and then headed to the hospital proper to get him registered and into his room.  I’m starting to learn NIH.  It’s somewhat strange and surreal.

Despite telling us multiple times she would not be here, as we rounded the corner of admissions, John’s mother sat in a chair, surrounded by multiple bags of ‘stuff’ (her quilting, etc).  She smiled widely at John.  My heart bottomed out.

It has been a long few days, and yet this morning, as I rushed to get over to John’s room before the nurses arrived to take him down to surgery and worried about logistics of things that -in the end- won’t matter and I will not remember, I worried about her, sitting two floors below in John’s father’s room, fretting about her husband and her son.

John’s mother and I are like oil and water.  We have never understood each other, and that is unlikely to change over time. We come from different places, we see the world through different lenses.  Nine years in, It is about rubbing along as comfortably as possible since we have deep and unbridled love for the same man.  Her son.  My husband.

**

I’ve sat in this surgical waiting room twice before — first, for Alan’s surgery several years ago.  John and I were together then.  And then last December I sat here alone, as I do today, as John undergoes the same surgery he underwent last December.  It felt much less intimidating today, I understood what was happening better, the nurses were more friendly.  I am sending texts to John’s mother, as she sits with Alan upstairs in his room.

Healthcare is a bitch.  I mean, it’s great, wonderful — sometimes ground-breaking and life-changing.  But it’s exhausting.  Hallways upon hallways of neutral colors, stale air pumping through vents.  Dry erase boards covered in red or black ink.  People on cell phones, their minds pre-occupied with something else, somewhere else.

It is nearly impossible to stay upbeat, positive, optimistic.  Throw in an unexpected mother-in-law who already grates on your skin like nails on a chalkboard, and it feels like climbing Mount Everest every day. Sisyphus eternally pushing a boulder in Hades.  (Yes, I know my husband will not like this blog post).

The thing is, it’s a struggle.  It’s a struggle that I shoulder because I love my husband more than anything in the entire world.  Because, despite the challenges of life, of my disease, the insidious M.S. with its joys of fatigue and spotty vision and muscle spasms — there is nothing in my life without my husband.  His is my North Star.  And because of that, because of that infinite love, I try very hard to rise up every day.  To face the challenges presented by his disease, by his mother, by life.  I do not always succeed. And I am not always graceful.  Sometimes I falter, sometimes I crack and break.  Sometimes tears come, without warning, as frustration and fear grip my heart and lungs.  As I feel lost and alone, whipped around by unending winds of change and darkness.  But still.  The sun rises.  It sets.  Time marches on.

As humans, it’s all we can do.  Rise up for the people we love.

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.

the FDA

Today, the hubs and I journeyed into Philadelphia for my quarterly appointment with Dr. M. Since I’ve passed the two-year mark of being on Tysabri, they have to monitor my levels more closely, because I have the JC Virus. (Little bit of info: the drug Tysabri elevates your chance of getting PML -which can be a fatal brain infection- if you have levels of the JC virus.  Some people have JC, some don’t.  They aren’t really sure how people get it/don’t get it, but it doesn’t have any affect on you … unless of course, you have MS and want to take Tysabri, which was the strongest drug for MS on the market until Tuesday.  Anyway, in addition to checking the virus levels, organ function has to be tested and monitored, etc etc etc).

Essentially, it just means I get to have more scans and more bloodwork on a more regular basis.  Who could refuse that offer?!?

Last Tuesday, the FDA approved Ocrevus (I have to use the marketing name, because the actual drug name is very long and I can’t spell it properly).  Ocrevus is the first M.S. drug that has shown positive effects in progressive M.S. patients so for them, I am over the moon that it was approved. I have relapsing/remitting MS but mine was pretty aggressive when I was initially diagnosed.  Dr. M had suggested switching me over to it last year upon its approval by the FDA so John and I were interested in what he had to say today.

First, Dr. M was intimately involved in the clinical trials, so he’s pretty close to the effects of the drug as well as getting it approved.  Second, I am fairly certain that I drive Dr. M nuts.  In a good way.

The bottom line was, after talking for a while, Dr. M, John and I decided that for now, I am going to stay on Tysabri.  Listen folks, some of the possible side effects of Tysabri are pretty scary.  Dr. M prescribed it for me three times before I actually scheduled my first infusion.  He had to sit with me in an exam room for hours to convince me to try it.  And at the time, I could barely walk a city block without a cane.  My flares were coming regularly every four to six weeks.  In retrospect, I’m not totally sure why I hesitated.  But I can only really say that in retrospect.  Knowing now that I haven’t had the scary side affects.

I’ve said it once …  I’ve said it a million times.  M.S. is a tough effing disease.  It’s creepy and sneaky and a real bitch.  I hope that as data comes in about Ocrevus that it’s all good.  But I’m super glad that I’m staying on Tysabri for now.  It’s been my savior.  And yes, it’s scary.  But sometimes you have to walk through the fire to get to the good stuff on the other side.  That’s how I think about it.  That’s how I have to think about it.  If I fell into the what-ifs too much, I would drown myself.  Instead, I try to know as little about it as possible.  Here’s what I know ~ in the two years I’ve been on it, I have had a quality of life I thought was an impossibility.  I don’t have to travel with an assortment of needles anymore.  My disease is officially classified as ‘in remission.’  And I am so, so grateful.

mindset

When I started this blog (oh so long ago) my full intent was to have an amazing cooking blog.  I was a bit obsessed with them at the time, and also, I didn’t really cook.  As I’m sure I mentioned in my earlier posts, I worked in food service — so the need to feed myself was minimal.  I just ate at work.  I enjoyed those early blog days — finding recipes, and taking food photography (harder than it appears, by the way).  Now, it seems to funny to remember a time when I didn’t enjoy putting together a meal.

Then January 21st, 2013 rolled around.  And my whole world sort of — fell into chaos? This blog became a place I came to scream into the void (or at least, that’s how I thought of it).  Not really diary (I don’t share everything!) but also a little without a direction.  Whatever came into my head became what I wrote about.  It was comforting, and cathartic, while also being amorphous.

Then, this year, I entered unemployment.  I can’t call it retirement — I feel too young to qualify for that.  I should be working, theoretically.  But … and here’s where I get a little gun shy, because it’s admitting weakness, and I’m not a giant fan of that … I found in my retired unemployment that the things I thought were caused by my job (unending fatigue and ennui, cotton brain, a lack of focus) didn’t go away.  I chewed on this idea for weeks.  Maybe a few more days of rest?  Maybe … maybe ….

I turned to my husband with eyes full of tears and confessed that I thought it had to be the M.S.  With it articulated came the wave of paralyzing fear.  I am only 37 – in how many ways will this disease continue to eat away at my life?  He told me not to panic.  That we would get through it all together.  He said I didn’t have to go back to work until I felt ready.  (Which – inevitably – made me want to go back to work yesterday).

Multiple sclerosis is a funny disease.  It erodes your body from the inside, insidious in its invisibility.  But we aren’t alone – those of us dealing with our own unique and debilitating battles have a huge community that we can tap into if we choose.  I’ve surfed on some of the websites, I’ve read the conversation threads.  Sometimes they are comforting — hearing someone else articulate something you thought no one would ever understand.  A lot of times they are deflating.  Like a very long, unending war that we will inevitably lose.

I’ve realized over the past four plus years, that my best, strongest and most reliable weapon in this fight is my mind.

Listen, the green smoothies are great.  And I love exercising.  It has deeply changed my quality of life.

But the Arkenstone of it all?  Thought.

Dealing with medicines and doctors and all the wildly “intoxicating” things that go hand in hand with having an incurable neurological condition is made infinitely easier if you think about it in the proper context.

I learned this from my husband.  A man who has gracefully handled his own cross — that of M.E.N. type 1 — since the tender age of fourteen.  He smiles and nods and contemplates.  He doesn’t panic.  He breaks things down to their simplest components and examines each one with a discerning eye. He finds — even in the face of seemingly insurmountable odds — the shred of hope worth holding onto.

So in that spirit, I thought I’d give a little more shape to this blog.  I figured — there are a bunch of M.S. sufferers out there, and people who love them who can’t understand.  What if I write about the experience, and trying to see it through a filter of positive thought?

Because it’s easy to be glum and sad when afflicted with something no one can see.  It makes you want to yell at people — shake them.  Don’t you understand?  I have M.S.!

They don’t understand.  You look pretty normal to them.

But … but … But! I am grateful that I am still able to interact in a world without a wheelchair.  I had a cane for a about a year — her name was Lydia (because, as I’ve said a thousand times, I felt that 34 was too young and I couldn’t call her a cane).  It changes how people look at you, think of you.  Speak to you.  Yes, I am frustrated when people treat me as though nothing is wrong.  But then, after a deep breath, I am grateful that I am healthy enough at this point my disease, that people don’t know.

Yes, having M.S. is hard.  I have just as many bad moments as good moments.  But M.S. doesn’t mean the end.  It doesn’t mean that we are no longer capable of doing great things.  It just makes it a little bit harder for us.  And maybe … the accomplishment a little bit sweeter.

 

my bike is a very very very nice bike

This morning, I was feeling incredibly motivated.  So –despite the habit I’d fallen into the past few weeks– I jumped on my stationary bike before 9am.  I started my audible.com book (“The Cruel Sea” for anyone interested … not something you might first consider to be good bike-riding listening, but I’ve been enjoying it very much).  I settled in for a long ride.

But … Something was off.  I’d noticed it yesterday, but thought it was just my foot slipping on the pedal.  This morning, it was different.  Very rhythmic.  Very disruptive.  Around 30 minutes into my ride, I picked up my phone and messaged John.  I told him something was wrong — he’d need to look at the left pedal when he got home.  I was going to power through my ride.

Only, I wasn’t.

At 32 minutes, the pedal fell off.  I scrunched down, I looked at each piece — the fallen off pedal and the mechanism on the bike.  Things were wobbling.  I sent John a picture.  I told him I’d broken the bike.

He was wonderful.  He asked for more pictures.  He started googling new bikes.  Within three hours, we’d checked “Best of” lists and ordered a new stationary bike as well as a trainer to put our outdoor bikes on.  I maniacally checked the shipping info.

I have become so used to riding my bike every day, sweating out the sorrows, the woes, the frustrations, the sadness and the fears.  Working through problems.  That when the pedal fell off, I felt even more adrift than I had when I left my job.  I felt terrified.  How would I get through the seven days it would take for my new bike to arrive?  How would I survive?  More importantly, how would I sweat? 

I fretted about it all day.  While I took Lucy to the vet, went clothing shopping with John, waited for take-out burgers.  I tried to calm myself with the knowledge that help was on its way.  But it didn’t make me feel better.  Smaller bumps than this had disrupted better men.  How would I stay focused and motivated with a seven-day gap?  I didn’t trust myself.  I didn’t trust my resolve.  Thirteen months, and this could be the end.  I was despondent.

John and I got home.  We put on comfy clothes.  I spread out our food booty on a TV tray.   Burgers, and french fries and blue cheese dipping sauce with a small cup of root beer.  He said he was just going to check out the bike.  Minutes ticked by.  I paced.  I fretted more.  I  poured two glasses of wine and walked downstairs.

“Do you want the good news or the bad news?”  There was laughter under his words, but ironic laughter, disillusioned laugher.  Not funny laughter.

“It can be fixed? But not today?”  I guessed.

“Ha!”  This time he did laugh.  ”No.  It’s fixed.  But we just spent a ton of money replacing it.”

“It’s fixed?” My voice was filled with both delight and the underlying fear that he was lying.

“It’s fixed.”  He stood up, his hands on the console.  He spoke with finality.

My whole world lightened.  I smiled, stupidly, childishly.   I positively beamed.  He shook his head.

“I can ride it tomorrow?”

“I wish I’d looked at it tomorrow.  Because now I have to ride it tonight!” He words were heavy but lined with amusement.  He caught my expression.  ”You can ride it tomorrow.”

We climbed the stairs back to our living room and settled in for burgers and sitcoms.  We toasted our glasses, and I thanked him for fixing my bicycle.  He smiled sadly.

“I’ve counted on it for thirteen months,” I began, feeling guilty.

“I know. I’m glad it was an easy fix.”  He kissed my forehead and took my hand.  We curled into the couch.  ”I just don’t know where I’m going to put the second bike.”

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.

 

 

 

snow daze

Twice this winter we have had dire forecasts that amounted to nothing.

Wildly disappointing.

I was looking forward to snow — mounds of snow, the air thick with snow — so much fluffy whiteness and quiet that it drowned out life for a moment.  I was massively let down.

I’ve been in an interesting mindset for the past few weeks.  Not quite sure where I’m going, not quite sure where I’ve come from.  When you spend a significant amount of time in any situation, you lose perspective.  You forget all the compromises you made along the way to get through the day.  Coming to terms with that can be both difficult and humbling. It can make you see yourself in a different light.

I spent many years of my life in abusive relationships.  I kept my head down.  I believed if I loved enough, if I gave enough, then any obstacle could be overcome.  I was wrong.

My husband is a great man.  A kind man, a thoughtful man, a caring man.  I walked through the fires of hell to get to him.  I don’t know what changed in the universe, what realigned karmically that allowed us to meet and make things work.  The timing was terrible.  I mean, it couldn’t have been worse.  We were painfully poor, I was unemployed.  Between us we had debt that could drown better men.  And somehow, we kept our heads down, we held onto each other and we — against all odds — became an unbreakable team.

We both did things along the way that broke us a little.  Things to pay the bills, things to get by.  We compromised our morals, we smiled in the face of ignorance and pettiness.  We held onto each other in the darkest moments, and then we held onto Lucy.  And we believed, unwaveringly, that we would get through to the other side.

A few years ago, after our backyard wedding and living in an 800 square foot apartment for six years, we somehow found ourselves on the other side.  We paid off debt.  We bought a house.  We bought silly cars.  We traveled to Italy, and then Iceland and then to Jackson Hole …. just because we could.

And after all of that, after all the struggle and the smiles and the massive compromises, I broke on the inside.  I lost my drive.  My direction.  I wondered what I was doing with my life.  Why I kept doing it.  I justified it all.  I came up with reasons.  They were good, too.  And they weren’t wrong.  I’d done what I’d done to get to where I stood.

But once I was there, once I had the things I’d worked so tirelessly for, I couldn’t imagine continuing.  I couldn’t imagine keeping up the smiles when I was so desperately, deeply unhappy.

So one would have thought that leaving that situation, walking away from all the burdens that had weighed on my shoulders for years — would make me feel infinitely better.  Strangely and sadly and with much disappointment and bewilderment, it did not.

I find myself, at thirty-seven, wondering who I am, what I stand for.  I don’t have children to help define me, to give me purpose.  And I don’t have the career that I held onto with a vice-like grip, to help me justify the choices I’ve made across the years.

It’s these moments, this struggle for self-discovery that separates the weak from the strong.  How do we rebuild ourselves following ‘the end’?

friendship

So, here’s a truth.

I quit my job at the end of January (technically, I gave notice at the beginning of December, but my last day was January 31st).  I quit my job and I didn’t really have a plan.  I knew I needed to change things up.  I knew that I had grown increasingly unhappy in my position.  But in juxtaposition to that, I walked away from so many great things that I’d done.  So many great things that I’d helped build. So many great people. Coming to terms with that was challenging.  And a little heart breaking.

During the end of my time at my last job and in these past few weeks of my unemployment (which has been surprisingly wonderful), I’ve had the chance to see a lot of friends, catch up on random things, procrastinate about cleaning the house and watch far too many episodes of “Grey’s Anatomy.”

And as I’ve come to terms with leaving Z, and moving forward in my life, I’ve also come to terms with a few other things.

Friendship is one of the greatest gifts of life.  True friendship, supportive friendship.  It’s beautiful and rare and should be nurtured and cherished.  But there are many kinds of ‘friendship’ and the good kind is the rare kind.  I’ve spent a lot of years doubting myself, and because of that, I’ve allowed other people’s doubts and judgements of me hold more weight than they should.  Because the truth is, I am the only person walking my journey.  No one ever trades moccasins with me.  No one ever has to suffer the consequences of my decisions.  Only me.  And I have to be able to sleep at night.  I have to be able to believe that the choices I made were the best ones.  The decisions and the actions — I have to stand by those things.  No one else does.

It’s okay that I didn’t have children.  Do you want to know why?  Because I didn’t want them.  And I knew that, and was responsible enough to stay committed to that.  I think children are adorable.  I think there are so many parents out there fighting the good fight, whose whole lives are wrapped up in their children and wanting what is best for them.  It’s a beautiful thing.  And also something I never wanted.  I’m not envious of people with children, of people with huge sprawling families.  I am happy for those people, and find joy in their joy.  But it isn’t my journey.

I didn’t have a plan when I went to college.  There were a lot of circumstances that colored my first few years at Penn State.  There were a lot of things that pushed me in one direction or another.  But I didn’t have a plan.  And that was hard.  And it was destructive and demoralizing when people judged that, when people belittled my struggle.  It was also painful to realize (in retrospect) that my struggles fed the feelings of superiority of people who claimed to be my ‘friends.’

It took me a long time to realize my worth.  My value, my abilities, my strength.  I can sit here now, and feel so proud of what I contributed to the little company that I helped grow, to the people I hired and mentored and supported, to the causes I championed.  And I know that even though my path to right now was not a standard one, and I didn’t really anticipate any of it, that who I am as a person, my hard work and personality, thoughtfulness and intelligence got me here.  And my accomplishments –both big and small — are not less (or more) than anyone else.

Actions speak much louder than words.  But words can cut like daggers.  Words can stay with you and sit in your soul.  Words can sometimes never be forgotten.

My purpose in life isn’t to make someone else feel better about their life choices.  It isn’t to be cut down and diminished to buoy someone else.  And I have ‘friends’ who make me feel that way.  I’ve had a lot of friendship break ups over the years.  Women are tough.  Women have a hard time supporting other women.  I am not innocent of bad behavior.  But I can also acknowledge when I do it.  And I am not proud of it.  And I have made promises to myself to be better.

But to be better, i also need to recognize when it’s time to walk away from something that no longer feels healthy or productive.  And that decision can be a difficult one.  Not because I like how I’ve been treated, but because there is history.  And there used to be — a long time ago — something that resembled love.

I am so blessed in the women I know are my true friends.  I am blessed in a husband who is friendship and companionship and adoration and love and lust and laughter and partner personified.  I am blessed in the people I choose to surround myself with who bring me joy.  I am ready to be done with the people who try to pull me down, who don’t believe in me, or bring laughter and light.  I am ready to be done.

Life lessons learned riding Septa

It was a long ride home last week.

I am at the very end of my current employment, and the train ride from our home into Center City is brutally long.  It’s long when the train is an express, usually clocking in around an hour and ten minutes.  But when it’s a local, it’s closer to an hour and forty minutes.  And that’s just the time I spend on the train.  Not waiting for it, not walking or driving to and from.  Just me, sitting in a pleather seat, watching South Eastern Pennsylvania slip by, day after day.

I began thinking, as I watched all the other passengers riding with me on the Paoli/Thorndale line, about all the lessons I’ve learned.  About myself, but also about life.  While commuting on Regional Rail for the past year and a half.

First, timeliness is everything.

Y’know that saying, early is on time, on time is late, and late is fired?  It applies to Septa.  And it should apply to all aspects of life.  I used to be habitually late.  I mean, you could set clocks knowing that I would be fifteen minutes late … at the very least.  But I learned really fast: that didn’t fly with Septa.

Think about it this way.  If your train is at 6.50am (which mine is) and you arrive at 6.50am, the train is gliding away from the station.  You’re late.  I mean, technically, you’re on time.  But you’re actually late.  If you get there after 6.50a you are just plain out of luck.  In order to be on the train, making your way laboriously into the city, you have to be early for your 6.50a train.  It’s not negotiable.

Now, Septa can be late.  And without fail, they are.

But YOU can’t be late.  And knowing that, living your life by that, helps give structure, and teaches you to appreciate timeliness.  In all aspects.

On that subject, when I made the adjustment from driving to commuting via train, I began to prioritize my life.  When you drive, time is loose.  Maybe you stop for a coffee en route.  Maybe you sleep in one morning.  Maybe you leave the office at 5pm.  Maybe you don’t.  You have a lot more freedom, but with that freedom (let’s say it together now) comes responsibility.

When I started to have a set time for work, I began to be more efficient with my tasks, prioritizing things that needed to be completed in the morning, things that could wait until the afternoon, and projects that could be spread across a few days.  I began to know exactly what needed to be done when, and how to do all of the things I needed to do within the time allotted.

I began getting home at a reasonable time every night.  Eating dinner with my husband.  Taking my dog for a walk.  Knowing that I did the best work I could during the hours of the day that had been ear-marked for work.  And that my evenings were my own.  (Sort of.  I work in the restaurant industry, so really, no time is truly your own.  It’s all the restaurant’s time).

All because Septa only goes to Thorndale once an hour — even during peak hours.  If I missed a train, I had to wait an entire hour, and get home even later.  That stopped being okay in the first two months.  It was exhausting, and I had no quality of life.  At all.

Something else about Septa.

Everyone is equal.  There isn’t a first class.  There are no special seats.  We all shuffle in, grab a seat, and hope that our seat mate showered that morning.  When the train is overly packed, the conductor speaks to the car like everyone is an adult with a brain.  He tells us that he’s not coming through to check our tickets.  To please show him when getting off the train.  He thanks everyone for their cooperation.

Everyone.

Not just me, the thirty-something white woman.  But the Indian and Hispanic people, the black men and women.  The Asians and the Arabs.  The women wearing hijabs.  The mother with three children.  The man with the seeing eye dog.

All of us.  As equals.

Every person riding Septa has a story.  Mine is pretty basic.  I live in the countryside of Chester County, but I work in Center City.  I commute during peak hours.  Sometimes later, when I stay to have dinner with my girlfriends.  Sometimes earlier, when I have to be at Penn for medication.  There are other people like me.  But there are other stories, as well.  Students riding in for classes at Drexel, Penn or Temple.  Men and women traveling to see a relative or loved one.  Someone commuting to the airport.  Someone who just got divorced.  Someone who just lost someone.  Someone suffering through IVF.  Someone with cancer.

Septa is the great equalizer.

We all show up on time.  Or we miss our train.  We all share seats.  We all smile when someone sits down, or gets up.  There are some exceptions (Septa isn’t utopia, people) but there are common courtesies that are observed on Septa.  Every night, the conductor wishes me a pleasant evening.  When people are lost, or confused, he helps them.  He maintains order in the microcosm of Septa.

I bet I’ve sat next to many a Trump supporter on the train.

I shudder thinking about it.  But I also think about how we are all just people on Septa.  Just people making our way through life.  I’ve had so many people help me on Septa.  When I was new, and completely terrified, people pointed me in the right direction.  When I jumped on a train, people let me know where it was going.  When I haven’t been able to lift a bag, someone has helped me.

And even when trains are delayed, or schedules are modified, or trains are pulled off the tracks or strikes affect travel…  People band together on Septa.  People watch out for each other.  It’s sort of heart-warming.

Anyway.  I am eternally grateful to Septa for making the past year and a half bearable.  I am grateful that instead of gripping my steering wheel in utter frustration, I could lean my head back and close my eyes.  I am grateful for learning timeliness.  And the greatness of people.

Thank you, Septa Regional Rail Paoli/Thorndale line.

 

 

 

January goals

I’ve been reading a lot of articles lately about getting ‘back on track’ in January, starting cleanses, hitting the gym, starting the ‘good habits’ etc.  In general, January is our collective ‘reset’ month.

This was my first January not feeling compelled by any of it.  I started a lot of my consistent, good habits in March of 2016, and I came through the Christmas season without feeling overwhelming guilt or over-indulgence.  Somewhere along my bike-riding and food-tracking journey, I started to not only listen to my body, but respect it.  I know that when you say no to the cake or candy, or only eat the vegetables at a big holiday dinner, some people might interpret that as being ungrateful or rude.  But in the spirit of my last blog post, I have reached a weird, zen state of self-worth.  I prioritize taking care of myself.  And I’m okay with that.

I didn’t even feel resentful through December, or as though I was depriving myself.  I knew what my limits were, I knew what I needed to do to keep on an even keel.  Riding the bike happens on Christmas Day in the same way it happens on a Wednesday night after work — because you choose to do it.  Eating a balanced meal is the same.  Munching on processed foods or potato chips is certainly easier than cooking dinner (even if you feel much worse for it in the long run).   There are few things I like to do at the end of a long workday, and cooking and exercising certainly do not lead the list.  So the hubs and I have come up with some meal hacks (mostly Wegman’s prepared meals and sushi) to get through the nights when cooking is absolutely not on the radar.  We talk enthusiastically about meal planning, but we haven’t quite reached that point of utter organization.

Right now, we are in a quandary about what to do with our two spare rooms.  Currently, one is set up as my home office, and the other is a library of sorts — but we call it Lucy’s room.  We set up our guest room in the basement with the en suite bathroom and private entrance, so we don’t really need to make either of these rooms another bedroom.  (Our guest count is fairly low anyway.)  We have found that while we have lots of ideas of how to make them look great, the point is to make them both look great and be functional, and that is a true challenge.  Since I am leaving my  job in a  few weeks, I’m not sure what my need for a fully functional home office will be moving forward, but even saying that, the way my current office is set up drives me bananas.

Right now I’m in a strange, mental purgatory.  I know what I’ve left behind, but I don’t know exactly where I’m going yet.  So it makes it challenging to plan.  To make decisions about what we need/don’t need.  I sit here, and between tapping away at the keys, I stare at the wall, wondering what my future holds, wondering what 2017 will bring for John and I.  Last year was such a crazy year — amazing trips and time with family and friends.  Football games, and dinners at delicious restaurants.  Fire pits on our deck, and holiday parties.  Settling into our new normal.  I don’t think I could have guessed last January that in twelve months I would be leaving the job that helped us get to this place, a job I thought I’d do for years to come.  That J + I would be staring down his second major surgery in less than two years.  That chaos would be dominating every corner of our lives.

And in the face of all these changes, all these uncertainties, I have this bizarre calm at the center of my being.  I know that we will be okay.  I know that no matter what, we will pay our bills, and keep our house and our cars.  We will continue to be able to feed ourselves and Lucy.  We might not get back to Iceland this year, but we will go back.  We will be okay.

And that’s what I hold onto when it all feels like it’s too much.  I hold onto the knowledge that John and I have gotten through everything together.  When our bank accounts were overdrawn and the credit collectors were calling non-stop.  When we couldn’t afford to turn our heat on.  When we couldn’t afford gas and groceries in the same week.  We figured it out.  We got it done.  And we will continue to get it done.  And I will continue to ride my bike in the garage, and eat spiralized zucchini and sweet potatoes.  And we will be okay.