and now, we are here

This month has been a little crazy for me.  Sooooo many MS appointments, needles in my arms, big magnets, life-saving drugs, etc etc.

Today, Facebook reminded me that a year ago, I left my old employer.  It blew my mind that it has both been a year, and been.a.year!  So much has changed.

To be fair, I probably should have left a lot earlier than I did.  I don’t think I had any concept of how wildly unhappy I was until several months of decompression had occurred.  Suddenly I wasn’t angry any more, I wasn’t constantly stressed out about things I couldn’t control and I began to see my life a little more clearly.

Multiple sclerosis is pretty serious.  I mean, it is but it also isn’t.  I think I’m just used to it by now.  It’s just how my waking hours are shaped every day.  I learn, I make adjustments, i forge on.  I don’t think I spent nearly enough time thinking about that and how my life had changed with my diagnosis until I wasn’t working any more.  I mean, my job controlled my whole life.  It was always priority number one.

And let’s be honest. For years, it was a one in a million job.  I had lucked out.  But then, suddenly, it wasn’t anymore.  And I had to call it.  I don’t regret that.

I know this post is a little bit of a ramble through my mind, but everyone’s journey is different.  Just like everyone’s MS is different.  We all get up in the morning and do our best … and sometimes that’s enough and sometimes it isn’t.  When I lie down to sleep every night (well, y’know, most nights when the fatigue hasn’t totally clobbered me) I do an inventory of the day.  Did I drink enough water?  Did I eat well?  Did I exercise?  Did the chores get done, the laundry folded, the groceries bought and put away?  Did the damn floor get cleaned?!? (It is the bane of my existence).  Did I moisturize, brush my teeth (this one is a little hard for me to forget, I’m manic about brushing my teeth!) did I take care of all my MS stuff …. I mean, the list doesn’t end.  I’ve usually fallen asleep before I get through it.

MS makes you think about other things as well, when you’re ready to think about them.  It makes you think about how you spend your time, how you spend your money, what you prioritize, who your real friends are.  It helps you to shape your life in a better way — both mentally and physically.  Possibly emotionally as well, but I’m not sure I’ve gotten there.

There are a million ways to live a life.  When I left Z, I worried that I’d made the worst decision.  That I would look back and regret it.  I justified.  I got angry.  I twisted everything up and over-examined it.  But you  know what really healed all the pain that it had caused me?

Time.

Time away. Time pursuing other dreams.  Time that rolled on and moved away.  And suddenly, all the angst, all the introspection, all the heartache and self-doubt and stress and anxiety that those seven years had caused me feels very far away.  And I feel free.

only numbers

I turned 38 earlier this month.

I’m pretty sure that every member of my family ‘teased’ me about my obsession with numbers at one point or another (this year, and every year …. this month and every month).  But I think I see life like a big, gridded calendar and knowing where everyone lies helps to quiet the never ceasing chaos of my brain.

Here’s the thing.  I’m okay with being 38.  I’m actually better than okay with being 38.  It fits me.  I fit into the grid nicely on December 12 and currently, at the age of 38.  I’ve enjoyed my 30s.  I don’t look my age (thank you Rodan + Fields and not having children) but even if I did, I think I’d be okay at 38.  Every moment in life is a learning moment, something that helps you (hopefully!) become better, more thoughtful, more well-rounded. Something that helps you appreciate where you are at this very moment. 

Today, my mother turns 70.  I’m fairly certain she wouldn’t love me saying that.  Most people don’t (although I routinely say people’s ages as I know them and their relationship to my own age — even if it’s in days, minutes, hours or years).

My mother is the best that seventy combined years has to offer.  She is thoughtful, kind, intelligent, funny, insightful, open, understanding, opinionated, strong … she has a distinct voice not only in my world, but in THE world.  She is measured in her responses, but that doesn’t prevent her from being cutting when she deems it appropriate (or necessary).  She believes in things and stands by them.  She soldiers on through the most unfair, the toughest of odds and she does it with a smile.  Her eyes still sparkle, she still gets dressed up, she still has the delight of a child when something new, or unexpected surprises her.

She looked at me across the dinner table last night, and gazed down at her son, my little brother, seated at the end of the table, and I could see the love and pride in her eyes.  She did an exceptional job raising us — she was the most lovely, most creative, most perfect mother a child could ask for.  She treated us like people (she always said it was because she was not meant to be a mother, but I think it’s because she absolutely was meant to be a mother — our mother).  She taught us, and took us on adventures, and made everything seem interesting and fun.  She encouraged learning, and welcomed us onto her bed at night to read stories (during which she did all the voices).  She made huge sacrifices we didn’t understand and she never burdened us with in order to give us the life we had as children.

As adults she has listened, supported us, allowed us to stretch our wings and both fall and fly.  She has embraced our chosen partners (even dusting off her French to speak to David’s lady in her native tongue).

She is — quite simply — exquisite.

And despite my bizarre obsession with numbers, that’s all they really are.  Just numbers.  They don’t define an age, a person.  They merely track time.

Anyway, today and every day I love my mummy.  My mama bear.  At every age.  At any age.

 

ebb & flow

Life can be a beast.

Sometimes it gets to you, it invades your thoughts, your heart.  You become angry, feel helpless.

But I also believe life is like waves in an ocean.  Everything ebbs and flows.  The tough times help us appreciate the good times.  The sadness helps us know the full extent of the happiness.

We flew home from Jamaica last Saturday.  It was a long day.  Snow and ice rain delayed flights … cancelled flights.  We spent far too much time in a dumpy airport bar with Pizza Hut  personal pies.  I felt as though I’d never felt so tired.  (Which is saying something, as I am intimately familiar with fatigue!).

But on either side of that misery was family, our home, goodness.  Home cooked meals and evenings of laughter.  Palm trees, blue ocean — soft blankets and drifts of white snow.

Snow has begun to fall again today.  The skies are gray.  I had to cancel my girls weekend because somewhere along the way, I got a head cold that knocked me sideways.

But Christmas is around the corner.  Family and good food and snuggles.  Ebb, flow.

never-ending

I’d like to believe that there’s a part of every single person that believes inherently that they are destined to do great things.

I mean, if we don’t all believe that, what are we doing?  Are we really content with just being mediocre?  Being middle of the road?

I don’t think that’s a thing.

And yet, in the months I’ve been home, I’ve come to see my restrictions so clearly it can be frightening.  I’m tired — all the time.  Not sometimes, or in the afternoon, or after a long day.  All the time.  When I’m rested, when I’ve eaten well, when I’ve slept through the night (it does happen!).  I’m always tired.  Sometimes it’s mild — like, whoops, I went to bed too late, but I can power through this day.  Sometimes it’s so all-consuming I’m unsure whether my brain will ever function normally again.  When I’m really tired, I forget things.  A lot of things.  It feels like I’m drunk, or perhaps drugged … like the world is faraway, and I’m seeing it all through water.  I play a game every morning, just to test myself.  I always try to remember what movie was on when I fell asleep.  Sometimes it’s easy.  I remember right away.  Sometimes I have to ask John.  Sometimes I just can’t remember, and I get so frustrated.

Today I wondered if I would ever be able to do anything ever again, the fatigue was so shattering.

And yet, I have to believe that if it’s something I care about, something I feel passionately about, I’ll get it done, I’ll figure it out.

There are a million things I want to do in my life.  And I certainly don’t want MS to be the obstacle preventing me.  And as I lay in bed after my nap today, I also knew deep down that I don’t want to be mediocre.  I don’t want to come and go through this life and not leave a mark.

I think I’m finally ready to figure out my next phase, my next step, the next chapter of my life.  If I can stay awake long enough! 🙂

 

 

gratitude

Do you know who you are?

I mean, really for real, deep in your gut, know yourself?

Do any of us?

Aren’t we all a work in progress, an exercise in trying and failing and trying again?

On Monday an old co-worker called.  I think of him more as a pseudo brother ~ we had one of those relationships that ebbed and flowed and sometimes there were tears (mine, not his.  And quite a long time ago).  And a lot of time there was laughter.  We enthused over Eminem years after his Marshall Mathers LP dominated my life.  We were the blind leading the blind for many years, learning as we went, always being on call.  He let me be me, and I think I did the same. We had an unspoken understanding of ‘how things were’ and we both worked hard to make everything perfect.  We both got tired.

I’ve been spending this year trying to figure out who I am, what I want — what direction to go.  Every few weeks I panic and send out a million resumes to jobs I don’t want (haha!  They usually don’t want me, either!).  I would get so tired I’d spend an entire day trying to make it to bedtime … only to get up every two hours throughout the night.  I got frustrated, discouraged, afraid.  And I was always exhausted.  A little forlorn.

My conversation on Monday began to change all that.  I remembered my passion for things, my determination.  I remembered what I have to offer.

And for that, for that feeling of re-ignition, I am profoundly grateful.  November is always the month when we post daily gratitudes (an exercise that I find invades all aspects of life, and somehow spreads sunshine on the darkest of days).  But to feel that spark again, that motivation to act, to clear the cobwebs and once again move with purpose — there are no proper words of thankfulness.

There is only the warm glow of knowledge — of friendships forged in trenches, of industries full of passion and wonder, of unbridled love for food, and beverage and hospitality.  Feelings that I thought died long, long ago.  I am so grateful for new beginnings, for true friends, for second chances and for untapped opportunities.

hashtag me, too

When I saw the first #metoo post in my FB feed, my stomach flip-flopped and I felt a lump in my throat.  I was overwhelmed with emotion.  Let’s be honest ladies — we don’t talk about it.  We never have.

Quite awhile ago, I told my husband about something that happened to me in college.  I circled around the issue, I argued for and against.  I justified, made excuses, twisted it up so much in my mind that I wasn’t sure exactly what had happened anymore.  I knew how I felt then, I know how I feel every time I think about it now.  Confused, scared, gray.  But could I tell you the details?  Not all these years later.  I know that when it happened, and I talked about it the next day … or maybe it was several days … the reaction wasn’t good.  It wasn’t accepting or understanding or sympathetic.  It was distant with the acrid underlying of suspicion.  If I hadn’t known before then — and I probably had — we just don’t talk about it.  We soldier on.  We endure.

I’m not a stupid girl.  I have never knowingly put myself in silly situations.  I’m quite certain I’ve never “asked for it.”  I’m strong and I’m smart and it has still happened to me.  More than once. In more than one environment. Being smart or strong doesn’t make you immune.

Several years ago something happened at work.  It made me feel very uncomfortable.  Very vulnerable.  Kinda gross & icky.  The reactions from co-workers were the same as the reactions had been in college.  Even the sympathetic eyes were guarded, silent.  No need to be drawn in.  Just move on, forget about it.  For God’s sake, stop talking about it.

My mother, on the other hand, was appalled.  She immediately called for my resignation.  My father was quiet.  He didn’t say much of anything.  Maybe he didn’t know what to say. Maybe it’s all so ingrained in us that this is what happens.  This is what we must overcome.

I didn’t quit.  I stayed.  But I never forgot.

The thing is, the #metoo movement means more than just violent rape at a college fraternity party.  It means more than stereotypical ideas of sexual harassment and assault.  It is the idea of bringing attention to a systematic thought pattern in our society.  That not only is the habitual act of sexual harassment wrong, but also wrong is the idea of shaming those who choose to talk about it.  Those who would like to make a difference.

As a woman who has experienced a myriad of sexual harassment and discrimination, I have stayed silent because I felt powerless.  Who would believe me?  Would it be worth the inevitable pain and suffering of bringing things to light?

I’m okay.  I have soldiered on and endured.  In many ways, i have forgotten.  But that doesn’t make it alright.  It doesn’t make it acceptable and forgiven.  It is a tough, painful thing to contemplate, to consider wading through to the other side.

In the end, we are all human.  We should all treat others as we would like to be treated.  (Although this calls into question if all people want to be treated as we ourselves would like to be treated ….).  We should treat others with decency and respect.  With thoughtfulness and kindness.  Unfortunately, we do not currently have a leader who demonstrates these things.  That makes it challenging.  It makes the going feel tougher than it should.

I stand in solidarity with all the women, all the humans, who posted #metoo.  I stand with you in strength and in understanding and with love and compassion.  I know how hard it is to admit these things that we have swept away, that we have hidden under layers of defenses and justifications.  I stand and I hold my head high.  Because even though it’s hard to comprehend sometimes, I didn’t do anything wrong.  And neither did the other women who have suffered in silence.

sometimes

Sometimes it’s virtually impossible to be positive.

Despite this blog and my obsession with Instagram ([at]simplygwyn if you are curious) I’m a pretty private person.  I don’t relish in other people’s misfortune (or fortune) and I don’t always like to share my own.  Have I had tough times?  Oh, yes. Have I had amazing triumphs?  Yes, it could be said.  Do I tend to share those specifics either here or via my social media identity?  Usually not.

Today has been a brutal day.  For many reasons.  MS, obviously.  I finally slept through the night but I woke up exhausted and without motivation to do anything.  Feeling that way is frustrating, sometimes as though I’m watching myself through a thick pane of glass, all the details blurry and no way to communicate to myself.  It’s hard for others to understand — there’s nothing physical that signals my distress, my struggles.  I look fine, so I should be fine.  I discriminate against myself using that logic all the time.

When you start a day feeling listless and then one thing after another pummels you — it’s very hard to rally.  I rode my bike — something that helps sometimes, but doesn’t always.  I did one of my longest rides ever — 32.1 miles in 90 minutes.  Yay!  Go me …. I think.

John got home close to 4pm and brought in the mail.  Yup, I’d been such a slug all day, I hadn’t picked up the mail on Lucy and my afternoon walk.  It happens folks, that’s the reality of my life.  In the mail was a delightful form letter from our new insurance advising me that after review, my MS medication would not be covered and all future costs would be 100% our responsibility.

Whomp.  Whoosh.  Air sucked out of my lungs, tears stinging my eyes.  And this was at the end of an already brutal day.

I’ve been on five drug therapies for MS.  I’ve read all kinds of blogs and posts about controlling MS without drugs.  I drink green smoothies religiously.  I can be enormously fussy about the food I eat.  I work hard every day but I cannot NOT be on medication.  Before Tysabri I had Lydia (my cane, for those who weren’t reading my blog in 2014).  I could barely walk up stairs.  My disease progression was aggressive and scary and bad.  And now, here I am.  Blue Cross Blue Shield of Michigan has decided that they won’t cover the only medication that has ever worked for me.  Somehow, a huge insurance company now controls my life.  Literally, my life.

Today, it must be said, has not been a good day.

 

doctor daze

Now that I’m in my third year of Tysabri I get to see Dr. M four times a year — every three months.  Plus side, only two of those visits require MRI scans.  Minus side — it’s four times a year I feel outside of myself, unable to articulate myself, overwhelmed by fear.

Yesterday, as John and I made our way back to the car, hot tears stung my eyes and I clutched my paperwork tightly in clammy hands.  I’d felt five years old in that office.  I’d felt out of my depth, unsure, wrong.  It’s a terrible way to feel.

I go to see Dr. M armed with a list of queries typed haphazardly in my phone.  I don’t know why I even bother.  The answers are always the same.  It could be MS.  It could be something else.  It could just be aging.  It could be something different entirely.

Do doctors want us to spend our lives in and out of waiting rooms, forever chasing answers to unanswerable questions?  Here’s a referral to a urologist, one for a psychiatrist, another for a gastroenterologist; here’s one for a DIFFERENT neurologist, because that’s not in my realm of practice.  Perhaps also a cardiologist?

Clearly, all us sick people have copious amounts of time and energy at our disposal to spend time on the phone (making appointments, haggling with insurance, etc etc), driving to and from all the appointments, following up on treatments and recommendations.  It’s a true joy to be told the same thing over and over.

They just can’t be sure.  It might be this, it could be that.  Have you seen so-and-so yet?

And it’s not just me.  It’s my mother, my father-in-law … so many other people struggling for answers, for a direction.

As we approached 95 from 76 I turned to John.  “I think we need to make doctor days sushi days.  Can we do that?”  He smiled and nodded.

consequences

I’ve been thinking a  lot recently about consequences.

A little bit about how as we get older, we are much more aware (wary?) of the consequences of our actions.  Some thoughts about how when we were young other things informed our decisions – fun, experience, etc.

Sometimes consequences have to be dealt with even if we wouldn’t have chosen the action.  I deal with the ‘consequences’ of MS every day, and I have to admit, I mostly wish I didn’t.  But here’s the thing — some consequences of this disease have been good.  I’m infinitely healthier than I might otherwise have been.  I get more sleep, I eat better food, I work out a.lot more than I ever might have. I drink a ton of water every day.  None of that is bad.

But I also have to think about everything.  If I do something physical, what are the risks of hurting myself?  If I hurt myself, how long will it take this broken down body of mine to heal? I recently went to Hilton Head for a few days with  my parents.  We drove down (it’s a long ride in the car, let me tell you!) and I flew home.  I tried as hard as I could to maintain normalcy for this finicky body but despite my best efforts, I spent about 36 hours after getting home trying to recover.  From what, you ask.

Excellent question.

From life.  From the dehydration I accidentally caused myself by not keeping up with my water drinking.  From the strange schedule that my body couldn’t find the rhythm to.  From fatigue caused by not sleeping in my own bed, in my own sheets, with my ceiling fan and window.

I know, this all sounds ridiculous.  I need to buck up, stop being such a fuss pot.

I one thousand million trillion percent agree.

Only, it doesn’t work like that for me anymore.

I quit my job at the beginning of the year.  For many reasons.  Being wildly unhappy was the final catalyst, something I’d pushed down for years (I understood the consequence of giving up my salary and wasn’t ready to take the leap for a long, loooonnng time.  That maturity and awareness had not informed my earlier years of job hopping because I didn’t think about the financial consequences quite as much in my early to mid twenties and before MS).

Anyway, I quit my job.  As the months have passed, I’ve come back to myself in so many ways.  I’ve remembered who I was before I was so completely miserable.  And I have also become more aware of how everything — and I mean everything — is affected by my disease.

Which brings me back to consequences.  Every action I take has a consequence.  In some ways, our lives are the result of the consequences of our actions.  Every time I decide to stray from my routine, my body manifests the consequences.  I’m not one of those people who can pop an Advil or two, drink a tall glass of water, and not feel the effects of a day at a bar the next morning.  I feel all of the effects.  Pain in my body from sitting on a bar stool, pain in my abdomen from eating too much processed food, pain in my head from having one too many glasses of wine (despite also drinking a water with each one).  And worst of all, the pain of unrelenting fatigue.

Here’s the thing, too.  Sometimes, adrenaline keeps me going for a few days.  When I was in Hilton Head, i didn’t feel bad.  I felt a little sleep deprived but nothing horrible.  It wasn’t until I got home that my body succumbed to all that ailed it.  When I was working, I pushed through.  I knew my responsibilities and I got things done.  I didn’t really feel the fatigue or the emotional toll it had all been taking until it was over, and my body collapsed from the sustained effort to keep going.

It’s a delicate balance, the art of considering the consequences and choosing what to do and what to pass on.  I know that people must look at me sometimes and wonder what my problem is.  “But she looks so healthy!  She looks better than she used to look!”  

Yup.  But I don’t feel better than I used to feel.  I am not, in actual fact, healthy.  I mean, relatively, I am.  But I still have a disease eating away at my brain and spinal cord.  I still have to journey to the hospital every twenty-eight days to be infused with powerful medication.  I still feel the slow deterioration of my abilities.  I am still so, so, unbelievably tired.

So yeah.  I’ve been thinking a lot about consequences.  How to minimize them.  How to choose wisely.  And I’m still so, so tired.

for our love and loyalty

I stood in a field on Saturday, in the pouring rain, on a much colder September 2nd than is usual, and it was bliss.

I own an absurd amount of clothing for weather — and if you know me at all, I’m not an outdoorsy type.

But I am the oldest daughter of a Penn State alum, an alum myself, the sister of an alum, the first child of a still married couple who met in State College in the early days of 1973.

I don’t know what life is without Penn State football.

Until about seven years ago, our seats were EFU, row 64, seats 25, 27, 29 and 31.  To be precise, when I was very little, it was just section EF, before they built out the suites and the upper deck of restrooms and concession stands.  As an awkward child I remember the questionable bathrooms at the top of the stadium, rickety and insecure.

I have grown up attending PSU games.  Tom Bill was a quarterback who played for the Pop Warner group (ahem, the Flemington Falcons) my brother and I belonged to in middle school (me, as a gangly adolescent with a triangle hair cut, braces and bright red and white wire-rimmed glasses).  In 1994 we watched the best offense I’ve ever seen on the field at Penn State, led by Kerry Collins and Ki-Jana Carter.  I tell anyone foolish enough to listen about my deep and unwavering love for Kerry Collins, and the magic of Freddie Scott’s one-handed catch against Iowa.  I had student tickets in college for one season — long enough to know that Penn State for students is a completely different event than it had been for me my entire life.  I drove to Florida in a rented van with people I no longer have any contact with to watch the 2006 Orange Bowl go into triple overtime.  During the first game I took my husband to, we sat at night, in freezing and unrelenting rain, completely inappropriately dressed, until the bitter end.  Lou had raised me that way.

Seven years ago my dad decided to make moves.  He started counting his accumulated points with the Nittany Lion Club. He made a deal to buy my uncle’s tickets (so they were in his name).  And when our greatest PSU football tragedy occurred in 2011, we moved our seats down over forty rows and closer to mid-field. Lou Simone was not turning his back on his alma mater.  We did it over a few seasons, because of the rules of ticket ownership, and my dad determinedly made sure there were butts in our seats every game.  He got himself a reserved parking spot (something that came in mighty handily when I could barely walk in 2014).

My husband — not a PSU alum — has been indoctrinated.  My brother moved to Texas, only getting home for one game a season.  But not John and I.  We go as often as we can.  We stand in cold, in rain, in snow, in 30mph winds.

This season began with a rout of Akron, and spending the day with John’s fraternity brothers drinking beer (or wine for me!) as the parking lots emptied.  On Friday, after my brother’s arrival Thursday night, we will all head up again for PSU v. Pitt.  We have made the crazy decision to get the tailgate catered (pulled pork and chicken sides and macaroni and cheese … oh my!).  And no matter what happens, whether it rains, is cold, has gale force winds — we will all wear blue and white.  We will sing the Alma Mater.  I will cry (I always do).  And we will enjoy our 2017 family PSU game.