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7 mars 2023

Something I try to remember – when things are really really good, or when they are really really bad – is that life is like the waves of the ocean. It never stops and it peaks and valleys and time is absolute and I will come to the end of one thing as the next is beginning and so on and so on ad infinitum.

I remind myself of this when luck goes our way (because usually it is on the heals of luck really, really not going our way). And it’s a reminder to myself to stay present and be in it. Because it will not last. It will either ebb or flow but it will not stay constant. Because the only constant is change.

When we decided to change our life and move permanently to the center of Pennsylvania, we had some pretty good and valid reasons. There have been moments since that decision that things have felt damn near impossible. That I’ve questioned everything. Wondered why I’m such a glutton for punishment. This move has not been easy. And as most of us know, moving is not for the faint of heart anyway. It’s a beast.

Today we woke to a fresh coat of snow and a bright blue sky. We hustled our butts and made it over to the game lands – the whole fam dam! – and took a wander in the early morning sunlight. It was breath-takingly beautiful. Even when Eli found the carcass of a dead animal and tossed it gleefully in the air all the while eluding our efforts to catch him and separate the still-furry skeleton from his mouth. This morning was a reminder of all the reasons we made this move. And all the reasons it is worth it.

Ground has finally broken on our new home and even though there are still miles to go before it is done, and so many hurdles to jump along the way, it feels as though we are sluggishly leaving the station. Which means we are moving. Which is GOOD.

John and I have settled into a somewhat stilted routine of work, managing Eli and attempting to adult. We have successes and we have some failures. But we don’t go to bed angry. And that is the greatest blessing. (Usually I go to sleep on an acupressure mat while Avengers:Endgame plays quietly in the background and John is either pacing (when Eli is calm) or scrolling (when Eli is not)).

The baristas at our local coffee house recognize us (I insist on bringing reusable cups) and smile, I found a yoga studio that is so much more than yoga and is wonderful (albeit incredibly different than BNB), Eli successfully navigated Puppy Primary Class and John is set and ready for spring fishing. We’re getting there, even if I still have to dig in Tupperware for clothing and have no idea where half my shoes are.

We are surviving.

Xox, g

8sept22

I love the rain. But today it’s sunny and I have been able to drive the Miata. And let me tell you – there’s nothing quite like driving a manual convertible sports car. We’ve had Gigi (what I’ve named her much to John’s chagrin) for a full week, and I feel positively child-like driving her. Plus, she’s beautiful. Shiny rich cherry red with lux sand-colored leather interior and black accents. I’m heady about her.

Anyway. So far, today is less messy than the past few days. Both hubs and I work best when we have a rhythm – a routine – and that has been painfully missing since Lucy went to sleep. Today felt almost -dare I say it? – normal compared to the hectic pace of the past few months. I have a dentist appointment in a little bit, but otherwise, we have both worked out and done our ‘chores’ and will get to cook dinner together and curl up on the couch to unwind at the end of this beautiful September day. The windows are open and the air is wafting through, the sounds of nature riding on her gentle breeze. I just sent hubs out to drive Gigi solo because he hasn’t done that yet, and there is something indescribable about whipping around the windy roads of Chester County all alone. I told our neighbor it feels almost inappropriate about how fun it is.

Anyway. I feel as though I come to this blog with a lot of heavy shite and even though there are just heaps and heaps of hard things happening today (as is the case with all days, I have to admit) the best part about today has definitely been driving with the roof down and my music blasting.

Pure joy.

xox, g

6sept22

I read something recently that equated Labor Day Weekend with New Year. A time when we all collectively re-start. I like that. Today was a shite re-start for me, but I’ll take it. My Dad once said that I stumble and fall often, but I always get back up. I hope that remains true for the remainder of my days. I didn’t want to go to yoga this morning – it was satisfyingly gray and rainy. Bed was wonderfully comfortable. But I dragged myself up, did the requisite getting ready and morning chores (which includes washing all the towels in the house for Towel Tuesday) and managed to get into Husby’s truck just in time to make it to class.

Which I did not do.

I messaged the instructor, I hydro-planed (not related to the message), nearly rear-ended a sedan, got to the studio, grabbed all required accessories (still damp from getting into the truck) and trudged through the rain. It was three minutes past start time, and even though I knocked and waved and tried valiantly to get someone’s attention, I was left outside.

Huge bummer. Because I certainly needed some yoga after a hellish drive.

Got home. Successfully backed the truck into the driveway (not something I either do frequently or enjoy) and got even more soaked as I shlepped my yoga gear back inside with the groceries I’d picked up and two hot drinks from Starbucks.

I was pretty sure I could use the day before me to get things done, but I am an expert at wasting time and getting side-tracked (perhaps my best skill is procrastination haha!). I forced myself onto the bike, lifted (who am I?!?) and went for a walk. And here I am, about an hour from when I want to start making dinner, having accomplished all of NONE of the things I need to get done. I can’t even get a photo to upload properly to this blog. Which is driving me batty.

When I was younger I had a very interesting interaction/communication exchange with my mother’s oldest sister. Thoughts were exchanged. I was shamed. For existing, I believe. If I can recall. I don’t remember all the details (I’m sure she still has the emails so if I truly wanted to know, I guess I could ask … but why I would do that, I certainly don’t know). Anyway. One of the things I do remember was a bit about how I hadn’t earned anything in my life and didn’t understand hard work. I’m not sure how she knew because I’d grown up across an ocean in a country she’d never lived in, but hey ho, at eighteen I didn’t think that rationally. What I heard, and remembered, was that my suffering was not nearly worth giving any time to or recognition of. My suffering was dismissed because of apparent privilege (being American I guess?). Anyway. I never forgot that, that there was a scale of hardship and my life and struggles didn’t rank on it. I bring this up because I am sensitive about ever complaining about how hard things are because in the grand scheme of life, my troubles are not nearly comparable to many, many people in this country and around the world. So being snarky about not understanding website formatting shouldn’t even be mentioned.

On the flip side, does that mean that anything and everything that is hard for me, within the parameters of my life, should be discounted as difficult? I’m not sure. I am certain that my problems are first world, white upper middle class problems — which aren’t usually life-threatening. But sometimes my problems are very real, and very difficult because within the framework of my existence, I am struggling.

MS taught me that.

But this isn’t about MS (despite essentially my entire life being about MS in one way or another). Today was a challenge for me even though that might not actually equate to being hard. And I find myself frustrated, exhausted and overwhelmed with sadness as the minutes slowly click by on this random first Tuesday of September.

I also have to remember that I’m that girl – you know the one. The one in her early forties without kids, in a happy marriage with three cars, two houses and a travel problem. The girl who spends her weekends going on coffeeshop dates in a zippy red sports car convertible and doing home renovations (because she can). It doesn’t really matter that I worked hard to get here; I learned some hard life lessons along the way as well as the painful struggle of an incurable autoimmune disease. The point, I guess, is that even though today was a tough one (for me, which -I think we’ve established- is relative) I still have a husband who loves me, food in the fridge, clothes in the closet, a roof over my head, air-conditioning, heat and health insurance that covers my catheters and my infusions and my migraine meds and my plethora of doctor appts. Sure, I lost my mother and my grandmother (the women who most specifically made me me) and my baby girl earlier this year. But I can still walk. I can buy shoes and jeans and skincare and get my hair done.

I don’t know. I think comparison IS the thief of joy. But how do we stop comparing? How does the cycle end?

A question for another day.

xox, g

3sept22

I should have been in Ireland today, celebrating twenty-five years of my cousin’s marriage.  But life didn’t work out that way and we had to cancel flights and rearrange our schedule … and then rearrange it again … and again.  And now, I’m spending today alone, sitting on my back deck, reading yoga texts and contemplating taking a shower soon (because I dragged myself to yoga this morning – worth it, always!- and I’m gross and stinky and really need to clean up).

When I left Zavino all those years ago – more than five, whew! – I had no idea what I was going to do.  I knew I wanted out of that job and that company, I knew I wanted out of the commute and the stress of restaurants, but I had no idea what else I was qualified to do.  That debate quickly took a back seat to spending time with my mother as she battled cancer and eventually succumbed followed by  two years of surviving the ever-changing landscape of a global pandemic that metamorphosed into a country massively divided.

But I’m young and I can’t ‘do nothing’ forever.  In fact, my body and my brain massively object to doing nothing indefinitely.  So earlier this year I endeavored to finish my yoga teacher training.  And I’m hoping to be able to teach plus incorporate my life practicing yoga into my new endeavor with Danielle.  My brain feels happy – challenged and overwhelmed and blissfully content.  It’s funny what direction and purpose can do for a person.

I had this strange moment yesterday while John and I enjoyed a coffee date on our back patio.  I thought about how we’re all racing to accomplish something – become someone – make our mark … but to what end?  I thought about all the joys of my life, the hard work J+I have put in to crafting this little slice of happiness together, and I thought to myself – I’m ready to just sit back and enjoy it for a bit.  Enjoy our homes and our decks and our patios and our cars.  Enjoy where we live – Longwood and Marsh Creek and West Chester and State College and Beaver Stadium – and all the trappings that come with this life built in rural pockets of Pennsylvania.  I want to just … be.  And not feel like I’m racing or completing or rushing or reaching.  Because here – where I am – is more than enough.

My younger brother lives in the French Alps.  He travels nearly constantly – he summits mountains and ice-climbs and skiis and surfs and white-water rafts and reads loads of books and writes screen-plays and has a million friends who love him.  He visits the sets of Scorsese films and hosts epic Halloween parties.  He lives life extremely well.  And I have moments (more than I’d like to admit but – I believe – understandably so) when I wonder how he lives such a rockstar life, and I sip chai teas in Chester County and shlep into Philadelphia routinely for medicine infusions.  How is my life so … boring … compared to his?

It always takes me a beat to remember that my life is actually exactly what I want.  Just as his life is exactly what he wants.  I don’t want to sleep on a mattress in a van – no matter how cool & adventurous it sounds! – because I like sleeping in my nice bed (or any bed for that matter) and being able to shuffle to the bathroom without getting dressed and putting shoes on.  It’s really hard to remember that when the romanticism of his existence tugs so constantly on my soul.  I have to begrudgingly remind myself that I am a creature of habit, that I enjoy seeing my baristas at my Starbucks and my yoga friends and teachers and my dad on a regular basis.  I like having roots and routine.  Those things feed me.

But I was raised by parents who travelled everywhere, and to whom travel and adventure defined success.  I know – am more sure than anything – that my Dad loves me, but is he as proud of me and my life as he is of my brother?  Maybe.  I don’t know.  My American father married my British mother.  My American brother married his French wife.  I married an American man whose young life kept him in a small town in north central Pennsylvania.  He didn’t have a passport until after we met (and not because of me – because his job sent him to Costa Rica for long stretches).  I think about these things more than I want to because I think being human means being afflicted with some kind of insecurity.  Mine is not living up to potential.  Not taking advantage of opportunities.  Not having purpose.

Heavy.  I know.

Anyway! The breeze changed directions and I got a whiff of my stinky self so I am off to shower and do wildly exciting things like balance our check book and rearrange our cleaning supplies and the laundry room.  I bet my brother is doing something epic – like watching a famous race or attending a crazy celebration.  That’s okay.  It’s better than okay.  That’s life.  And I am grateful for every day.

 

Xoxo, g

17322

I have a million things in my head but my mind is fuzzy and I’m tired.  And all I want is to feel better and be able to do yoga or just get sweaty but I can barely function and I’m so frustrated and so effing tired.

Starting again.

I’m super type A.  I’m a competitor.  One time, in middle school, I went on a bible study trip with a friend of mine.  (I was not in bible study – our family did not go to church.  But I was drawn to it, fascinated by it.  Constantly curious).  The trip consisted of biking and then rafting.  I’d tell you where or the distance … or any of those things.  But I can’t remember them.  I remember biking, but mostly I remember the rafting.  For a couple reasons.  First, I was crazily competitive and our raft was often far ahead of the other rafts.  (To me, this was excellent.  To those who wanted camaraderie and friendship and shared memories and who understood that life is not always a race … not so much).  Second, we ended up getting pinned between the raft and a large boulder and it took every ounce of strength not to get sucked under the water.  It came about because we were so far in the lead we headed to the shore before the landing point and then had to navigate back out onto the river.  Anyway.  I learned lessons that day.  And it has forever stayed burned in my memory.  Because one of the camp counselors (bible study group leaders?) lectured me about competitiveness and reading the situation.  That winning was not always the thing … sometimes, winning was actually the opposite of the thing.  That we missed out on a lot of fun because we were so focused on ‘winning.’ And we (ironically) went on to learn that lesson very painfully when fighting powerful currents and trying to stay above water.

Anyway, I tell this story because it comes up a lot in my steam of conscious thought.  Because I am super competitive.  And sometimes I lose sight of the fact that life isn’t actually a race or a checklist.  That life is a journey and every moment should be savored.

Perhaps not specifically this moment of being sick on the couch, still fighting a fever with poison ivy blisters dotting my forehead in a snake-like line from my eyebrows to my hair line.  But that’s not exactly the point.

There are things to be learned in this moment.  And there is so much to be appreciated in all the other moments.  Friendships and discussions and learning and growing.  We are all gifted this one precious life — what will each of us do with it?

I worry that I am not doing enough, I am not reaching my potential.  But what is potential exactly?  A societal ladder that we are all encouraged to climb as high as we can?  Could potential equate to more than momentary gain and professional accomplishments?

I don’t know.  I’m just one human.  Perhaps I don’t have the power to change the script for everyone.  Perhaps I only have the power to recognize that I need to change the script for me.  That my potential doesn’t have to fit into a neat box of societally accepted achievements.  But it’s hard to remember that.  It’s hard to get up and look around at the world and remember that this one life, MY one life, should only be lived for me.  Not anyone else.  Not any other approval.

So if I don’t win awards or publish books or sit on Oprah’s couch discussing philosophy … it’s still okay.  I’ve still understood the assignment.

Xox, g

20222

Some days I don’t feel well and I know what the issue is.  I ate something wrong, I didn’t sleep well, etc etc.  Today I couldn’t quite put my finger on it.  But it was an MS-y kind of day.  Aches and pains and stiffness and fatigue.  One of those days where I’m working hard just to be human.

When I was first diagnosed I swore I wasn’t going to change anything about my life.  I wasn’t going to let this disease change me, change the things I loved, change the shape of things.  But life changes the shape of things, we learn and we grow and we make better decisions.  Some of us get pushed in that direction, but I think most of us eventually get there.

I’ve known for a long time I was going to have to make big diet changes (ones that I sincerely don’t want to make – hence dragging my feet).  Today reaffirmed it with a vengeance.  As I sat in the darkness of the movie theatre and reconciled with myself that I knew exactly what was making my digestive system revolt; I could either continue to suffer or make the changes I need to make.  I felt both sad and resigned.  And painfully, painfully tired.

Adulting is hard work.  Whether it’s making responsible financial decisions, or changing my diet, I find it a struggle every day.  Where do I compromise, where do I stand firm?  What’s worth it and what isn’t … and what are the consequences.

It’s a little after seven at night and I’m calling it a day.  I’m flat out exhausted, my body is spent, and there is no reserve of energy to pull from.  Today is done.

Xox, g

16222

Life has been anything but easy lately.  Not just my father-in-law’s health, but my own and how to manage my disease while being supportive of my husband as he navigates the unknown waters of post-surgery delirium.

This moment is the other shoe dropping.

Things happening in clusters – first a run of really good things and now a run of really challenging things.  Moments that remind me again and again how far I have to go on my journey of self-development and self-discovery.

How do you know the line that differentiates self-care from selfishness?  How do you give without giving up everything … your self-worth, your mental health, your personal peace?  I wonder these things as I sit in my headache purgatory.  As I order groceries online to be delivered.  As my legs buckle beneath me, giving up or giving in …. On the verge of giving out.

How do I walk this tight rope of personal preservation as my husband transitions to permanent care-taker?  Is it even possible?

This is the other shoe dropping.  Loudly.  With a definitive thud.

Xox, g

05222

There are so many things no one tells you.

As though it’s a rite of passage to learn difficult lessons.  As though we all should feel lost, afraid, angry and alone at multiple times in life for multiple reasons, and no one is compelled to help us out.

Like how life can feel happy and settled and you can feel blessed and lucky and so overwhelmingly content and then a wrecking ball blasts through your whole world, taking no prisoners, leaving havoc in its wake.

Like how you think you’ve worked out all the kinks, done all the growing and learning and accepting but then still be knocked over by a feather.  A tiny, inconsequential  moment that would otherwise be forgotten before it’s even acknowledged ….  But this particular feather dismantles your carefully built life with a swirl.

I’m having a day and I’m feeling painfully alone.

And I know I will survive.  I will move through this as I’ve moved through all the obstacles I’ve faced to this point.  But I know it will hurt.  And I know things will be irreparably changed.  And that knowledge hurts almost as much as the obstacle.

Xox, g

03222

At dinner this evening I stated to husband that I was no longer going to make any New Years Eve resolutions.  I’m not sure where it came from but it came tumbling out of my mouth confidently and assuredly.  Somewhere, during the course of this day – this random, not totally inconsequential day— I finally knew.

I knew that I needed until February to understand what my goals for the year were.  Too much happens in December — my birthday, lots of other birthdays (Jesus, for the believers!).  The anniversary of the loss of my mother.  Too many things to have any additional time to contemplate changes for the new year.  If I wanted to do that in a timely fashion, I’d have to make the decisions in October or November.  And I certainly couldn’t make those kinds of new year, new you decisions months in advance.  Too much changes.

I decided – and then articulated – that I needed January to get my bearings for the new year.  I needed January to decompress and get back into a rhythm.  Get a feeling for where the next twelve months were leading me.  I decided that January will serve as my ‘pause’ moving forward.  January will be the moment when I catch my breath.

And so, as February dawns and we get into 2022 in earnest, I can more clearly see what I want to focus on, and what my goals are.  Some things I try to do every year – read more, watch less TV (this resolution has taken years to make an impact, but I do actually read more and watch much less TV so I guess… worth it? 🤷🏻‍♀️).  I usually hope I meditate more and practice the piano.  Still working on consistency there.

But February brings with it clarity.  It allows me to take stock of how far I’ve come, and how far I still have to go.

I’m not saying that husby and I are going to start Cross Fit tomorrow (or ever really; husby is deeply skeptical).  And I’m not saying that my grand idea of a letter writing campaign will ever take flight.  But I do want to lift more instead of only doing cardio.  And I want to give my friendships the focus and attention and time they deserve.  Life is short, and I want the people who matter to me to know they matter.

Anyway.  Small goals.  We’ll see how I’m feeling at the start of March.

Xox, g

15jan22

I thought a lot about how we all choose to exist in the world today.

It wasn’t a day filled with adventure or anything specific really – it was more an amorphous day of just existing for a moment – a pause or timeout from the stresses of everyday life.  A breath.

We drove aimlessly for far too long, sipping our coffees (tea for me) and just talking.  About life.  Our lives, our dreams, our pasts, our future.  We talked about what being back in State College regularly is for me – how it shapes my days and my thoughts.  We talked about the difference between what home means for me and what home means for John.  We talked about a lot of things. But we didn’t talk about people.  Maybe because it’s not interesting to us, maybe because we don’t interact with people regularly enough to have thoughts … or maybe it’s how we choose to exist in this life.

Which got me thinking about how people choose to be – how they choose to interact with the environment around them, the people they come in contact with – the content they choose to consume.

I’d be naive to think that there is no audience for what I consider absurd content.  Hateful content.  If there are makers, there are consumers.  People do not create readily without a need, a desire, a problem to solve.  And if content exists for things I consider worthwhile or useful, then the opposite must also be true.  And if both the content exists and the market exists, then I begin to consider the people who deem this form of content beneficial.  Who are they?  What is their motivation? Do they believe what they produce?  Has this served them well in the past?

And if I am wondering about these nameless, faceless people, shouldn’t I also consider my own role and my own choices in the same/similar situations ….

Which brings me back to the choices people make in how they exist in the world.

I can only speak for mine, because those are the only choices that I govern.  I know what I believe is worthwhile and useful and I know what I believe is hateful, ignorant and pointless.  But my beliefs only govern me … and my beliefs can also be viewed as opinions, which mean they are fallible, mercurial and undefinable.  ‘Worthless’ is not a noun, it is an adjective and therefore, infinitely subjective.

I’d get twisted about all of it but I’ve been having this thought circle for what feels like years, and I always end up back in the same place.  I can only control myself, I can only decide for myself and I cannot control, influence or mandate any other person’s choices in how they exist in this world.

It would be infuriating if it also wasn’t so finite.

Xox, g