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.

phantom bruises

So, for those of you not blessed with MS, let me tell you that the amount of bruises I find on my body are both intriguing and puzzling.  I don’t know if everyone with MS bruises easily, but what I’ve found is that a stiff breeze can color my legs purple and it takes weeks for them to fade.

The problem with this issue is that in the summer, my legs aren’t safely ensconced in pant legs, and therefore, the challenge becomes how to minimize the purple and blue.

A few years ago I got really serious about taking care of the skin on my legs.  It sounds (to me) a little over-the-top, but I was tired of having ugly, discolored skin all the time.  I researched exfoliators (I currently use Shiseido Body Illuminator, which I like a lot), tried out a bunch of moisturizers (I like Vaseline’s Cocoa Butter but my favorite is Johnson’s Baby Oil with Shea Butter) and got much more serious about using shaving cream.  I order from Harry’s, because you can get eight blades and two cans of shaving cream for $28.  Pretty decent compared to what the hubs spends for his razor blades.

But the product that changed the game was discovering Tarte’s Maracuja Rainforest Glow ~ a sort of tanner/body perfecter.  I guess it’s kind of like a tanner/foundation for the legs (or anywhere?, but I only use it on my legs).  It definitely hides the bruises, and it doesn’t take eight hours to kick in.  Sadly, Tarte discontinued it, so I desperately ordered the last three bottles I could find on eBay to buy me some time to find something similar to it.  Fingers crossed!

Hubs and I are heading to two Fourth Parties ~ one today and one tomorrow, so hopefully I can cover up the huge bruises on my calves (from what?, you ask ~ yeah, I have no idea.  I think the one on my right leg was from brushing into the car door too hard while unloading groceries … but the other ones?  Complete mysteries).

Anyway, Happy Fourth of July everyone!  May your parties be fun, festive and patriotic!

brian o’connor

During my last year of college I lived in a row of three houses filled with theatre majors.  It was a fun block and group of people.  I’m not in touch with many of them today (other than Facebook, but we’re the generation who grew up without Facebook, so a lot of us function without it … which means not a lot of online living).  But through the years, oddly enough, I have stayed in touch with  my next door neighbor and friend Matthew.  And to some extent, through Matthew, his brother Brennen.  Matthew is a successful actor in New York City and Brennen is a successful architect back in Pittsburgh (where they are from).

But when I think of Matthew and Brennen, the first thing I think about is Brennen’s Laser (dark blue, and always sitting in the common driveway, the hood popped up and Brennen’s upper torso leaning over the engine -for a purpose none of us were ever too interested in).

It’s hard, in a few words, to describe that year I lived on North Atherton surrounded by those boys, but I have memories for days.  Brennen and the Laser, playing video games (the only time in my life, and only for a few months before Brennen took our Playstation away, pointing out that we’d completely stopped doing anything else).  Writing music, listening to music, sitting and talking for hours at a time.  It was a magical year.

It was also the year that I was first exposed to “The Fast & the Furious.”  And, for reasons I still cannot pinpoint, I fell in love with it.

When John and I started dating, we watched the fourth movie on a bootleg internet site – the coming back of Vin Diesel and Brian O’Connor after the (in my opinion) blasphemy of ‘Tokyo Drift.’  We saw ‘Fast Five’ in the theatre on opening weekend.  And the sixth.

And then, like a shock wave, Paul Walker died.

I cannot explain why it affected me the way it did.  I was absolutely devastated.  I watched all my DVDs for days, watched  Brian O’Connor wearing his chucks and vans.  Smiled with tears in my eyes when he spoke.  Tweeted too many times with the hashtag “Remember the Buster.”   I wore chucks for a week leading up to the release of F&F 7, and was there for a matinée showing on its opening day.  I don’t think I paid very much attention to the movie ~ I was transfixed with watching Paul Walker on-screen.  And I still cry every time I see the end sequence of that movie.  Big, hot, emotional tears.

So when “The Fate of the Furious” was released, I felt a little torn about seeing it.  Hubs was hoping that with the departure of Brian O’Connor (Paul Walker’s character in the movies), I would move on from my “Fast and Furious” obsession.  We didn’t see it in the theatre.  I listened to, but stayed quiet, about all the reviews.  Was I ready to see a new F&F movie without Brian O’Connor?  I didn’t know.

But I pre-ordered it on iTunes because deep down, I couldn’t turn my back on this series of movies that have grown more and more absurd as their popularity has grown. I love them too much.   I still think about Paul Walker asking for his tuna sandwich, no crust and am magnetically drawn to the films.  So John and I sat down to watch it this week.

To me, there was a gaping hole where Brian O’Connor should have been.  But, I also considered that life goes on for all of us when we lose someone we love.  Life continues, and the hole is there and the memories are there and the emptiness drums in the background, the heartbeat of the person we’ve lost.

It was better than I thought it would be.  It felt like there was a story again – something that I’d felt was missing from the sixth and seventh installments.  My breath caught in my throat when Roman (Tyrese Gibson) and Letty (Michelle Rodriguez) mentioned Brian in the middle of the movie.  And I cried at the end, knowing but waiting for confirmation of what I’d guessed.

I don’t know why I love the movies.  Life, maybe?  Good memories?  And I certainly can’t explain why I was so ripped apart by an actor’s death — a person I didn’t even know.  And yet, I was.  I remain staunchly loyal to Brian O’Connor.  The Buster.  Tuna, no Crust.

And I’ll keep watching the Fast & Furious movies until they stop being made.  Because I can’t give up now.

every morning

This morning John and I slept in.  What that really means is that he gets up with Lucy at 6a so she can have her breakfast and a little walk around the neighborhood to do her duty, and then he comes back to bed.  So really, it’s a win for me.  I always mean to get up but the beginnings and the ends of days are tough for me.  It’s tough for me to get going, and it’s tough for me to stay awake at night.

I thought, since I’m trying to get back to this space a little more, that I’d begin July with a post about how I begin most of my days (barring meds, or MRIs like yesterday, when we get up at 5a and head into the city).

Every morning, I get up and put on my watch.  That begins the tracking of my movement for the day.  Also, the earlier you start your stand hours, the sooner you hit 12.  I check my Nalgene by the bedside – how full it is, etc.  I have four Nalgenes, three of which are in constant rotation at the house for my water tracking.  One is purple, one pink and the last green.  Each is 32 ounces, so based on the idea that a person should drink half their body weight in water ounces, I need to have about 80 ounces of water a day.  And more, because I exercise.  So I make a mental note of which color bottle I’m starting with, and how many ounces are in it.  I try to have three full bottles a day, plus any extra waters at restaurants, or our other water bottles that fit into the Jeep (and actually keep water cold). Having the different colors helps me remember (if it’s a tough brain day) how much I’ve had.  I can track by color.

Once I’m vertical, and have allowed my body to have its morning spasm (always enjoyable), I get dressed to work out.  My goal is always to ride the bike early, so that the rest of the day is free, but I will confess that that doesn’t happen all the time.  I get distracted doing laundry, or cleaning the floors, or reading a magazine.  But I now have a whole section of work out clothing in my closet (thank you Fabletics) so I’m usually go to go with clean clothing.

I’m a skincare junkie, so I try to splash my face with some cold water and then do a quick wipe with toner.  Then I slap on some lightweight moisturizer with SPF so that when Lucy and I walk around the neighborhood I don’t get sunburned.  I also psychotically brush my teeth and use a tongue scraper (sidenote, if you have never used one or don’t even know what it is, let me tell you that it is the best thing for making your mouth feel clean and keeping your breath fresh.  I am obsessed with mine).  I will confess that the time I spend in the bathroom at the beginning of the day and the end of the day is not a small amount.  But … I like taking care of my skin and my teeth.

Next up I take four drops of liquid Vitamin D and B12.  I do 8000 IUs of Vitamin D a day and 1000 of B12.  Probably a little higher than the average Joe, but I have multiple sclerosis, so it works for me.  I also always  make my bed and clean up any clothing I might not have put away the night before.  Sometimes I’m so blindingly tired when I go to bed I don’t even remember, so despite my OCD tendencies, it isn’t uncommon that my clothes are folded and left out on the bench under my window.  Somehow, despite fatigue, I still manage to fold my clothing before bed.  Just not put it away.

I also put some foot cream on my right foot, because the nerve endings in that foot are shot, and so I have a build up of dead skin and calluses (super sexy, I know) and my podiatrist prescribes me an ointment that eats away at that stuff.  It’s pretty rad.

The best part of my morning is my green smoothie, which I almost always have first thing, before Lucy’s walk, my bike ride, or anything else.  I’ve been doing green smoothies for a couple years now, and our basic recipe is pretty delish, but sometimes we switch it up if we have extra fruit (recently we had mango and it was so.yum) or something we want to try.   We used to use the NutriBullet, but that burnt out after a couple years so now we use our Vitamix.  If you don’t have a Vitamix, consider getting one, because it is glorious.  I absolutely love it.  I put baby spinach, orange juice, milk, ice cubes, organic peanut butter, a banana, Field of Greens supplement, Matcha, ginger, turmeric and a little cayenne pepper into our smoothie. I used to use coconut oil, but I like the flavor of a nut butter better.  You could make it healthier by using nut milk and nut butter, but John and I have tried (to this point unsuccessfully) to make the switch away from cow’s milk and intermittently used different combos of almond butter, cashew butter and others, but because it’s such a routine thing, I buy the easiest stuff to get when I’m trying to get in and out of Wegmans as fast as possible.  (That store is NEVER not crowded.  Seriously.)

With our smoothies I dole out our vitamins, a Men’s Multi for John, Women’s Multi for me, and a Vitamin C boost.  Sometimes we take Airborne (depending on the season and how we are feeling).  After that, it’s a walk around the neighborhood with Lucy, which I consider my warm-up, and then some burpees, squats, ab stuff and a bike ride.  My goal was 100 miles a week, but I’ve upped it recently to 150 (I was consistently hitting about 135 a week, and figured I needed to increase the challenge).

Anyway, that’s my morning.  That’s my little recipe for trying to feel the best I can regardless of how my body and my disease are feeling.  I read in one of my health magazines an interesting piece about hitting a workout plateau.  And I think I’ve begun to mentally apply it to MS.  A lot of times people hit a plateau because they don’t believe they can keep going/push harder/lift heavier/last longer.  But mostly, it isn’t about what our muscles are capable of, but what our mind has decided.  So sometimes, when I am near tears and feeling utterly beaten and frustrated, I think about that.  And I try to focus on succeeding and overcoming.  And once I believe I can, it makes it a lot easier to accomplish.  So, even when my bones ache, and everything feels heavy and clunky, I make myself get up, strap on my watch, and begin my day putting goodness in my body.

Happy July all! xo

memphis

Last weekend I logged onto my admin page for this blog, and I couldn’t for the life of me get the ‘new post’ page to load.  I was frustrated.  I had something to say.

So I typed it in a word document, determined to post it the next day.

But time has a way of slipping through even the most diligent of fingers, and my fingers, in regards to this blog, have not been very diligent of late.

I’ve re-read what I wrote a few times.  But for some reason, am no longer compelled to share it in its original form.  What I will share is the general idea of what the post was about.  And -hopefully -make it better.

My new car.

John and I purchased a brand new, all-white, fiftieth anniversary Chevy Camaro last Friday.  It’s a 335-horsepower V6 manual.  It sits luxuriously in our driveway, exuding power and sexiness.  I often look out the front window and down at her low profile roof, all slanted windows and curves.  I wonder who the lucky driver of this magnificent beast is, and giggle knowing it’s me.  It’s sort of hilarious.

But the car is more than that.

It’s a return, for me, to driving a manual car for the first time since being diagnosed with MS.  When I test drove it, my palms were sweaty, I was convinced I couldn’t do it — would stall out, grind the gears, ride the clutch until the acrid smell of burning filled the air.  But it wasn’t like that at all.

Driving stick is a little bit like riding a bike.  Once you know how, you know how.  And it comes back magically, as though all those years of driving automatic never existed.  As though you’ve always known the feel of the road through your gears.

Maybe I drove it too fast.  Took a corner badly (ps. can she handle or what?!?).  But it was intoxicating.  Even the nervousness of the visibility and the rumbling power under the hood could not dampen the pure exhilaration.

The past few months have been a roller coaster of life changes.  Leaving my job.  John’s surgery.  His new job.  Our changing routine and idea of normal.  Sometimes I’ve felt a little lost, looking for a purpose, a direction, something resembling motivation.

It’s funny that driving a stick shift again has been so seminal.  As though I’ve come back to myself.  As though the battle I fight every day, with the green smoothies and the bike riding and the water drinking and the vitamin taking and the …. blah blah blah … has come to mean something tangible.  I’ve taken little pieces of myself back since this disease took over.  Slowly, painfully, almost imperceptibly.

Fact.  I have MS.

Another fact.  It sucks.

Little victories ~ a new recipe that rocks, walking without a cane … once again driving manual …  they all matter.  They all count.  They are the things that keep me getting up, and blending spinach in a Vitamix, and sweating my face off in my garage on a stationary bike.

We named our new ride Memphis.  For our wedding song.  For our matching tattoos.  For the ancient capital of Egypt and for the city of Rock N Roll.

And she is beautiful.

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.

 

 

staying true

I think, as we get older, we all start to feel infinitely more comfortable in our own skin.  We find strength in our decisions, who we have chosen to be as people, our values, our morals, our likes and dislikes.  It’s comforting.

It doesn’t mean that people don’t exist who try to shake our foundation, make us question the choices we’ve made.  Those people exist.  Maybe they are just completely convinced that there is no room in the world for an opinion that differs from their own, maybe they are utterly committed to their ‘rightness.’  Who knows.  I have no problem saying that sometimes, other people’s choices don’t make any sense to me.  But they don’t have to — it isn’t my life.  I feel as though some people never get to that conclusion.

But what is so sweet, so justifying, is a moment in life when the things you’ve been quietly questioning are re-affirmed, and you know (once again) that you believed the things that were important to you, that you had faith in the things that rang true to your conscience.

Hubs and I spent last weekend in New York City.  We had tickets to see ‘Hamilton’ and no other plans than to just enjoy being in NYC together for a little bit.  We had drinks at Rockefeller Center, we had dinner with actor friends of mine from college.  We ate awesome sushi at a hole in the wall restaurant right near the theatre district.  We saw ‘Hamilton.’  It was magical.  And it reminded me of parts of myself that I’d forgotten.  It reminded me of the love I had for so long for theatre.  That I still have.  It reminded me that no matter how beaten down I’d gotten over the past seven years, what always pulled me through was the doggedness I had in regards to what I believed.  Was I insecure?  Oh yes.  Did I over think pretty much everything?  Absolutely.  But was I always true to myself?  Yes.  I might not be proud of many things about myself — I might get frustrated, and beat myself down sometimes.  But my family –my parents, my grandmother, my brother, my aunts and uncles — they helped me form a rock solid foundation of who I am.  And I am so grateful for that.  It certainly doesn’t mean I won’t worry about things in the future.  Wonder if I’m making the right choices.  But I know that I am true to myself, in the end.  That’s how I sleep at night.  That’s how I get through the tough times and the challenges.

I believe in honestly.  I believe in loving people and treating them with dignity and respect.  When I find that I have trouble doing those things, I try to figure out why.  I believe in finding the positive.  Finding the hope, finding the happiness.  Through disease, surgeries, crisis and woe.  As my favorite acting teacher said in one of my first college acting classes, Por Los Buenos.  For the good.  We are all motivated by what we believe is ‘the good.’   (Although I do think that some people are super pre-occupied with ‘who has it worse and let me tell you why/how’).

And one more thing. Time. Time is the great healer and revealer.  With time, the truth comes.  You just have to have faith, and believe.

losing faith

I had an interesting conversation recently.  In it, the idea was posed that some people ‘push through’ and others give up.  I was taken aback by the statement, confused by its context and intent.  But after thinking about it — far too much, I might add — I realized this.

Sometimes it’s about whether you believe, or you have lost faith.

It’s very hard to ‘push through’ when you don’t believe anymore.  And sometimes, when your faith has been pushed to its very limits, and you lose the thread of the narrative, it’s hard to care anymore.

Once upon a time, I was handed a business in a banker’s box.  And over the course of seven years, I learned many things the hard way.  The stress was, at times, unbearable.  But I was proud of what I helped to build, and that made it possible to keep going.  I believed in it fundamentally.  It made the hard times worth the pain, and the great times even sweeter.  But when I began to lose my faith, when I started to not recognize what I thought I’d been part of, it made it challenging to keep going.

It’s hard to walk away from something that used to mean so much.  But I also believe that you have to take care of yourself.  And the best of life has yet to come — the best things are in the future, they are just around the next bend in the road.  It took me a minute to get my brain around my new reality.  I had to forgive myself, and also commend myself for making the best choice for my future.  Life isn’t easy.  But it can be so beautiful if you let it.

 

And ps.  Hubs and I are seeing ‘Hamilton’ in two days.  I cannot wait!

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.