for these things ….

There is nothing quite like the first sip of chai in the morning.

I’m sure people feel that way about coffee.  But for me, it isn’t about staying awake, or even waking up.  The warmth and milky sweetness is just utterly comforting.

I have tried many times to give up my chai.  And I can’t.  And I probably won’t. Ever.  The little things in life that make us smile are worth keeping and cherishing.

This morning, after shivering the entire ride into the city (and for that, I actually DO say thank you to Septa because a person cannot always rely on their train to be cold in the heat of July), I made my way to Starbucks (as I do every morning in the city).  Most of the baristas know me, and they know my drink.  I’m nothing if not a creature of habit.

And as I walked back toward the office, twenty ounces of soy milk and chai syrup safely cupped in my hands, I thought about all the little things that make me happy.  Maybe not every day — we all have really bad days — but most days.

I love the city in the morning.  It’s a little hard to admit that, because Philadelphia and I have a love/hate relationship that tends toward the ‘hate’.  But before everyone gets angry, and the streets are hot and sweaty — before the gates are raised on the storefronts, and only half the population is awake — that Philadelphia is my favorite.

It isn’t easy dragging oneself out of bed before six a.m. (yes, there are lots of us awake before six,  but it doesn’t make it easier!).  I’m usually stressed out because I am running late for the train (Septa can be late, but us riders cannot!).  And the ride in can be tedious and full of weird smells, loud phone talkers and grumpy conductors.  It’s a cost/benefit analysis every day — the train can be much too public, however! ~ driving into Center City from our new house makes me want to gouge my eyes out.

But when you finally emerge onto Market Street, and it hasn’t gotten grossly humid yet, and the city is humming quietly as it stretches its arms and begins to wake up — it makes me grateful to come into the city multiple days a week, despite the very long commute.

I’m grateful for my new office (despite all the challenges) because it’s full of windows and natural light.

I’m grateful that I don’t punch a clock.

I’m grateful that when I get off the train at night, and speed walk to my car in an attempt to get out of the parking lot before the swarms of people also disembarking at Thorndale, that my house is less than five minutes away.  And Lucy will be there to greet me, with her wiggly tail and her toy gripped firmly in her mouth.

I’m grateful for our walks around the neighborhood (currently a construction zone) and for the time I spend getting sweaty on my bike (stationary or mobile ~ either works!).

I’m grateful for my house, and its comforts.

I’m grateful for my husband.  This could be an entire novel, so I’ll limit it to the fact that he is my best friend, and we get to hang out with each other nearly every day.  And wake up with each other nearly every morning.  And share all the goodness of life with each other.

I’m grateful for music, and especially “Hamilton” ~ the musical that restored my faith in the art form I have loved since childhood.

I am grateful for my family and the fact that they live twenty-three minutes away (just ask them!).  I am grateful that my dad comes to walk Lucy on Fridays while John and I are at work.  I am eternally grateful that they are always there for comfort, for advice, and for dinner.

I’m not sure why I felt moved to write this post.  But life gets really hard, and there are very dark moments.  Gratitude is important.

 

friday morning

I’m on my way to meds this morning.  It means getting on the 6.50a train – which is now the norm because of the issues with Septa’s car fleet that was taken off the rails over 4th July weekend.  The parking lot was nearly empty this morning – I guess a lot of Thorndalers don’t work on Fridays.

Yesterday, over 70 people were killed in Nice during a Bastille Day celebration.  Our world is sliding slowly toward chaos.  I wonder about my friends who have small children — I wonder if they think of the world their children will inherit one day.  It hasn’t — as yet — seemed to inspire much action amongst my generation except memes on Facebook and angry rants without actual thought.  Saying we need change is like saying I’m going to be the next President.  Empty without any action.

I’ve felt like writing a lot recently.  Not because of Nice, or Orlando, or Paris before that.  I feel as though my thoughts -on all of the violence and hate that seems just under the surface of our world- are muddy and confused.  I want to understand – I really do.  But I don’t understand and I don’t know what the best thing to do is.

This morning, all I want to write about is my bicycle.  Somewhat trivial and insignificant in the face of the tragedy our world is dealing with.  But meds week is exhausting for me — more so in the summer, when the heat is debilitating.  So this week, along with my bi-annual meeting with Dr. M, has been excruciating.

(P.S.  Loud people on the train at 7am irritate me.  They shouldn’t.  But they do.  Shhh people!) 

Yesterday I made my way home through a fog of fatigue, kissed my Lucy Lou, took her on a walk, and then shuffled down to the garage and my bicycle.  We also have two real bikes in the garage — we have gone on a long ride since buying them.  But I am much more consistent about jumping on the stationary Schwinn, picking a course and time goal, putting my head down, and falling into the story of ‘Hamilton.’ (Yes, folks.  I work out to ‘Hamilton.’  At this point in my life I do just about everything to ‘Hamilton’.).

And here’s the crazy thing — after 45 minutes, a lot of sweat, and 15.6 miles (my best time/distance combo so far) I felt infinitely better.  My mind felt clear.  I felt energized.  I realized, as I wiped the bike down and began shutting off the lights and the overhead fan, that I am probably addicted to the bicycle.  I’ve joked about this before, but yesterday it felt real.

Before M.S. I began running.  I did Broad Street — i had the Nike app on my phone.  Lucy and I did between four and five miles most mornings.

And then I broke my foot.  And M.S. began to consume me.  My legs got weak, we got Lydia — walking became harder than running ever was.  And time slipped by.  I was sad, and angry.  I felt trapped.  I tried going to the gym and swimming. It felt great — but the amount of time it took — get there, get changed, get wet, get out, get dry, drive home.  I was rarely motivated to go.

Last October, during a routine scan, John’s doctor’s saw a shadow.  And then surgery became necessary immediately. And so, he bought a stationary bike.  For himself.  To help with recovery.  It sat in our house from November until about mid-January.  It became what most home exercise equipment becomes — a collector of dust and occasionally laundry.

I don’t remember what got me on the first time.  Maybe our upcoming trip to Italy. Possibly not wanting to stare at a lot of wasted money.  Not sure.  But when we got home from Italy, I decided to make some changes.  So on March 1st, I started riding the bike.  Every day.

I didn’t like it a whole lot at first.  It was a drag, it took too much time, I got all sweaty.  I didn’t have work out clothing.  I had EVERY excuse in the book.  So I signed up for Fabletics (online advertisement = works).  I’d read that having nice clothing helps with motivation to work out.  So I ordered my first outfit — orange leggings and a white tank.

I wore those leggings ALL.THE.TIME.  I love them. I wore them grocery shopping and to Va La Vineyards.  And I wore them to ride my bicycle.  Every day.  When April rolled around and I ordered my second outfit, I couldn’t wait to not have to do laundry every day.  I’d committed to at least 66 days of working out (something I’d heard about having to do something for 66 days for it to become a habit).  I began actually using my “My Finess Pal” app for the first time in about four years.

It’s halfway through July now.  I have four or five workout outfits, padded bicycle shorts, body butter, riding gloves …. The list (surprisingly!) goes on.  Now, my bike isn’t a daily purgatory.  It’s where I go when I’m sad, when I’m mad, when I’m tired.  It is 45 minutes a day (give or take — sometimes I max out at 30 and sometimes I push to 60… it really depends) that is just my time.  It makes me feel good.  Really good.  Healthy and as though I’m taking care of myself.  I want to give this gift to everyone.  I understand why fitness people hype it up so much.  But you can’t actually give it to anyone who isn’t willing to push through.

Because it’s not super fun at first.  And I have a feeling that if you slip, and miss a couple of weeks — it isn’t easy to go back.  But it feels like a precious gift, a little secret weapon that I hold closely in the palm of my hand.  That no matter what, I can get on my bike, and get sweaty, and feel better.

always day two

I’ve always felt that the second day of doing anything is the hardest.  You begin your endeavor on day one with enthusiasm, great intentions, optimism.  And after that first day, you have a much better idea of what is in store.

That’s how M.S. goes.

I started out full of optimism, all the things I was going to do – the things I was going to prove.  The disease humbled me fairly quickly.  J and I spent yesterday in the Neurological Unit at UPenn’s Perelman Center and no matter how hard I try, how far I believe I’ve come — sitting in multiple doctor’s rooms discussing all my symptoms, how I’m walking, what my numbness level is — it’s all exhausting. There are no secrets between my husband and I.  Health issues have prevented that.

This gloomy Thursday morning, as the train makes its way laboriously into the city, my head is filled with thoughts, fears, details i forgot to mention.  Multiple sclerosis is no joke.  Maybe the average observer can’t see my struggles (and that in itself can be very frustrating) but they are there… every second of every day.

I lost feeling in my feet on December 23, 2012.  I remember very clearly, because we were in Mansfield for Christmas, and I hoped (prayed) that it was just a circulation thing.  Or maybe a pinched nerve.  I very clearly remember wondering if I’d ever feel my feet again. It was terrifying at the time.  Now, it’s just life.  I don’t remember when it climbed up my legs and down my arms.  It’s better than it used to be (Tysabri, food, exercise, etc).  But my pinky fingers and ring fingers are always tingly.

The thing about M.S. is – you can’t quit it.  So it just perpetually feels like day two, a vast unknown future full of questions.  Fears.  I have tried over time (after the anger and the denial and the sadness which inevitably comes) to find my way.  To crack the code.  And sometimes I feel like I have it under control, and other times I feel lost and alone.  I wonder if I’ll ever not have a headache, if I’ll ever not feel exhausted.  But it’s always back to putting one foot in front of another.  In having faith that the choices I am making are good ones.

It’s always day two.

breaking through

I’m tired all the time.

Not occasionally, or if I have less sleep than normal.

Constantly, unrelentingly.  Always.

This is one of the most joyous parts of having M.S. (To be fair,  I felt constantly tired before the diagnosis, I just didn’t have an explanation then).

Fatigue is a funny thing.  I stumbled through yesterday morning, as if in a dream.  I had two chai teas (in an attempt to be more ‘with’ it — and was then sugar-high and jittery all day).  I struggled mightily to remember the end of Sunday night.  Not because I’d had too much wine, but because by the time Sunday began to wind down, I had crossed over from ‘normal’ fatigue to overwhelming, bodily-function-shutting-down fatigue.

Every day is a learning experience.  I think it probably is for everyone, but I’m much more tuned-in to it now.  I have to figure out the pieces of this puzzle in order to live as normal a life as possible.  And the fuzzy vision and tingling legs are significant M.S. factors, but really, the thing that has taken over my life is the fatigue.

In the most basic understanding that I have, multiple sclerosis is my body’s immune system mistakenly attacking my nervous system.  Probably because it’s so tired, it has no idea what is going on.  Being familiar with that feeling, it makes total sense.  But jokes aside, energy is constantly being used to fuel this mistaken battle in my body, leaving much less for other (also important) things.  So when you first get diagnosed, and doctors tell you to just keep living a normal life ~ that’s not the best advice.  Sadly.

What I’ve found is that the healthier I am, the less pressure I put on my body (to digest food, to be hydrated, to have enough rest, etc) the better I feel.  Now, my meds are a huge factor as well.  My meds shut down my crazily active immune system when it seemed to be wrecking my body every four to six weeks.  But keeping that calm consistent is two parts meds, and one part smart living.

Sometimes, I don’t realize that I’m maxing out my body’s capabilities and i have a morning like yesterday.  Sunday didn’t seem bad while I was living it.  But waking up with no memory of my evening and feeling as though I was walking through water the whole day … not the best.  Sometimes I feel tired and I get on my bike anyway, and I actually feel better (weirdly counter-intuitive and I’m still figuring it out).  I know routine is my friend.  I know water is my friend.  I know vegetables are my friends.  Alcohol is not.  Meat is not.  Staying up past 10pm is not.  But I haven’t really hit on a consistently winning formula yet. Sometimes we have a nice steak dinner and a bottle of wine, and I feel exactly the same as I do when I eat zucchini spirals and drink 90 ounces of water.  Other times…. not so much.

And managing the vision and the numbness is much easier than managing the fatigue.  I can’t seem to figure out what works.  Some nights I sleep for eight hours.  Other nights I get up every two hours to use the bathroom.  Some nights I am out like shout.  Other nights I lie awake trying to calm my mind.  Sometimes I am burning up and sweating through my pajamas and sheets.  Other nights I pile on blankets in an attempt to get warm.  Nothing ever feels consistent.

Sometimes I worry about how my work schedule with the pressure and stress affect my body. Whether it’s a major factor when I get cotton brain.  I wonder if that’s why the bike helps even when I feel tired — it alleviates the tension gripping my body.

Mostly I just push through.  Having M.S. means learning to live with the fatigue.  It means participating in events or attending parties even if sleeping seems vastly preferable.  Because the sleep never alleviates the overwhelming tiredness.  The tiredness is a constant companion.  You have to break through to the other side; learn how to live with it.  How to function within it’s limitations.  It’s about both learning how to say no and learning how to say yes.  Learning how to prioritize.  Recognizing the signals your body sends you.  (I am not very good at this yet, but I’m getting better).

a few days of magic

We checked the weather pretty consistently leading up to our trip to Iceland.  The forecast was gloomily unwavering ~ 53 degree high with 70% chance of rain every day we were there.  I wasn’t too concerned.  I don’t like hot weather and rain doesn’t especially bother me (it more so bothers my naturally curly hair, but ce la vie when in Iceland, yes?).

So it was a super surprise that our last few days were filled with sunshine.  The golden glow of the sun makes Iceland even more magical than it is in the grayness.

We arrived at six a.m. last Friday morning, and after getting our rental car (a cute little VW Polo with heated seats!) we made our way down route 41 from Keflavik to Reykjavik.  It felt oddly surreal.  To begin, our flight had been somewhat painful ~ neither of us had ever done a transatlantic discount flight, and let me tell you, Wow Airlines is discount. So we were tired.  There had been several delays for various, increasingly absurd reasons, and then no pillows, no water or snacks … and a fellow passenger who insisted on keeping her window open, allowing bright sunlight to stream into the cabin the whole flight.

The thing about Iceland is that it reveals itself slowly.  The mist and Scottish rain were in full force as we searched for our car in the parking lot.  The country felt vast, as though emptiness stretched out in every direction.  When we were finally ensconced in the car and we’d duly read the driving instructions (road signs for four-wheel drive only roads, how to navigate blind corners, flooded roadways, being mindful of the strong wind, etc) we set off, finding out that our GPS didn’t work, and doing it the old-fashioned way (y’know, with road signs and paper maps).  The country-side was fascinating~ volcanic rock covered in vibrant green moss interspersed with clusters of bright purple flowers.  Puffs of sulfuric smoke billowing from the ground ~ a different cloudy white than the mist.

We made it safely to Reykjavik, sprawling along the shores of the ocean.  It didn’t feel like a city, but a country town filled with quaint buildings and shops.  Our apartment was close to a main thoroughfare and after checking in at the office, we headed down for breakfast at a cafe recommended by a friend.  It was surprisingly good ~ avocado on rye toast topped with arugula and bright, sunny side up eggs.  After eating, I felt a little more like a human so we wandered into stores and explored the area, waiting to hear that the apartment was ready for our occupancy.  Reykjavik is amazing ~ clean and filled with well dressed people, flowers blooming in overflowing pots on every lamppost, cobblestone streets, musicians on the corners and street art lining the narrow roadways.  Our first day was filled with tiny discoveries of the country ~ clues as to the Icelandic culture and people.  We did an early dinner at a small restaurant called “Old Iceland” (it was the best meal we had our whole trip, and we had some great meals).  Cured salmon, plump sea scallops, and our first taste of Icelandic Fish Soup.  We ventured up to the church at Reykjavik’s center after dinner.  Following that, I was dead on my feet and looking forward (very much!) to sleep.

On Saturday, we did the Golden Circle.  Iceland has a road that traverses the whole island called the Ring Road, and the Golden Circle is a small piece of that route.  It includes Thingvellir National Park (the rift between tectonic plates), Geyser and Gulfoss. We spent the whole day on the Golden Circle.  Everything was more beautiful than the last thing, and when you finally walk across the windswept moor and see the Gulfoss waterfall at the pinnacle of the trip ~ it takes the breath right out of your lungs.  We walked right up to the side, rain coats zipped up and hoods on.  It felt like true, pure, unadulterated magic.

For John’s birthday on Sunday, we booked time at the Blue Lagoon and the LAVA restaurant there.  We arrived in the mist and rain of the morning ~ by far the coldest and rainiest day we were there.  After navigating the gauntlet of the changing rooms, I met John on the other side, and the lagoon spread out before us, fading into dark cliffs and mist.  We waded in, water warm as a perfect bath, and slowly floated out, stopping to get glasses of champagne at the lagoon bar.  It was amazing, how blue the water was in the dark grayness and rain of the day.  The juxtaposition of the water’s warmth and the rain’s slick coolness remains indescribably perfect.  The water was opaque, so you couldn’t see your hands even an inch beneath the surface, and no matter how much time passed and how many more people arrived and drifted in, it never felt crowded or loud.  It just felt blissfully peaceful.  People covering their faces and arms with silica masks, floating into caves and underneath the man-made waterfall.  We found perches in shallow water and just sat, talked and drank champagne.  The epitome of decadence.  Lunch was yummy, too.  We did fish soup again (it is exquisite) and I had lamb, since Iceland is very proud of its lamb.  It was tender and perfectly seasoned, served with buttery baby potatos and perfectly cooked vegetables.  The restaurant did a special dessert for John’s birthday which was both beautiful and delicious.

We’d left Monday open, because we didn’t want to overbook ourselves (MS has taught us that).  So when we finally pulled ourselves out of bed, we decided to drive south, toward waterfalls and black sand beaches.  On a small quest to see the Iceland we’d come to know from “The Secret Life of Walter Mitty.”  The Iceland we saw was better.  Full of blinking sunlight and intermittent rain.  Craggy cliffs drifting into the clouds, waterfalls dotting the mountainside.  Volcanic rock softened by moss.  It was the perfect last day, which ended with a walk behind a waterfall and sandwiches from a food truck.  As we wound our way back into Reykjavik at nine p.m. the city had begun its celebration of the big Euro Cup win over England.  Fireworks set off in the midnight sun, car horns intermittently beeping.  The kindest and safest sports celebration I have ever witnessed in my life.

Tuesday morning was full of sunshine, not a cloud in the sky.  The blueness was vibrant.  We made our way back to Keflavik and enjoyed our last fish soup at the airport with Sauvignon Blanc and cured salmon over sliced hard-boiled eggs and arugula.  It was the perfect end to a perfect trip.

Iceland gets into your consciousness, filling it with optimism, with peace and gentleness.  I felt changed as we flew home across Greenland the wide Atlantic Ocean. I hope, as life reverts to the routine, I remember to hold the stillness, and peacefulness of Iceland in my heart and mind always.  And I very much hope that our next visit isn’t too far in the future.