27 juin 2023
When John and I got a bee in our bonnet last fall to sell our house and move up to Bellefonte permanently, we knew in theory it was going to be a long road, but we definitely did not have any idea just how hard these past seven months would end up being.
Add in a healthy dash of multiple sclerosis bullshit and the American healthcare system, and it’s been a very long, very difficult, very eye-opening 2023.
Tomorrow, we are due to close on our house.
This is not our first closing. It’s our third, so it’s not completely unfamiliar territory. But when the builder sent an email on May 31st saying that our closing date would be June 28, you could have knocked us over with a gentle breeze. This house building process has been anything but smooth and has left me at times heartbroken, disappointed and angrier than hell. I’ve never in my life spent so much money and had so little control. I have smiled longer and harder in the face of just mind-numbing condescension and bullshit than I did when I worked and let me tell you … that’s saying something.
Anyway, all this to say that as of today, we still have shit water pressure, our AC unit apparently won’t cool the house further than 68 degrees (words cannot articulate my horror at this news – that we would have to add to our HVAC unit in BRAND NEW CONSTRUCTION … ), our front porch pillars are 2x4s, no one knows how the generator hook-up works, people are still referring to the primary bedroom as master (can you see the steam coming from my ears?), the yard hasn’t been landscaped, our stove/oven is incorrect, there is a section of shingles that have been beaten all to hell (and on the other side of replacing our last roof after only six years, I can tell you that’s a sore spot for us), there is a portapotty on the edge of our driveway, a huge dumpster across the street and we have huge delivery trucks coming every day for the rest of the week. None of these issues include the things we have to do on our own – like the water softener so our pipes don’t get clogged with calcium and the tech consult so that our internet will work throughout the entire house.
Listen, it’s not all bad. This will be our very first single family home with a yard. The kitchen (other than the oven/stove 🤦🏻♀️) is beautiful. We are having custom closets designed. We just bought an incredible table and we can’t wait to settle in (even if Eli is going to most likely be a complete maniac).
I have a moment every day when I want to cry. I have many moments when all I want to do is sleep. But I also always think about all the things I’m grateful for – the parts of my life that make living easier. To begin, I don’t work. And even though I miss working, I am grateful every single day that hubs earns enough for us to be comfortable and be able to do all these crazy things. I’m grateful for air-conditioning and heating and NA wine and the ability to buy food and go to yoga and the salt room and all the things. I’m grateful for a husband and partner who loves me no matter what (and that gets tested a lot because MS is a lot). I’m grateful for my amazing family and my friends. I’m grateful for Eli. I’m grateful for travel and books and the movies. All the first world shit, Y’know?
Anyway. That’s where we’re at. I’m sitting at our kitchen table, frozen in a state of what should I do next? We aren’t moving a lot from this house so there isn’t a lot to pack. But … there is because clothing and toiletries (of which I have more than any one person should ever have!). We’re moving one fridge and having another delivered so food transfer shouldn’t be that bad. My high school reunion – which is Saturday – cancelled the day time portion so at least that freed up the weekend for us to work on getting settled in. I’m devastated (I’m the girl who wants to go to the reunion because she loved high school). But I also know that MS is knocking on the door and I’m going to spectacularly crash one of these days. And that’s not fair to John or Eli.
Xox, g
20 mars 2023
We endured a brutal weekend. This morning, as the alarm began to glow red (yes, we have a sunlight alarm because our room is like a cave in the morning) I think both hubs and I held our breaths, hoping Eli would stay curled up between us, hoping to keep this little moment of peace sacred.
Luckily, Eli was in a cuddly mood and hubs punted on his first call of the day (8am on Mondays!). Eli stretched and snuggled and gave many, many kisses. The red of the alarm lightened to pink and then bright white, and we finally got up and began our routine.
Every day has moments that remind us of our old life, before moving up here – we are both creatures of habit. But many things have changed. Eli changed us. He changed the shape of our days. He is absolutely nothing like Lucy in any way, other than Lucy was a boxer, as is Eli. He is feisty and loud and demanding. She was patient and quiet (but, to be fair, also demanding). They both reflect us, but in such strange and different ways. I find it fascinating on a daily basis.
Anyway, across our kitchen table are the parts of a cold plunge that I bought about ten days ago and which arrived on Saturday – at the very height of our household discontent. The fact that I managed to get it out of the packing materials is a small miracle. Eli and I did our regular hike this morning (he even found the remains of what I guessed to be a rabbit or squirrel and carried it with us for the entirety of the walk). Now he is stretched out near John, snoring softly. We have a few hours of respite before he wakes and demands more exercise, attention and movement.
I am trying to do a marathon day of laundry and save myself the trouble tomorrow. Mondays have somehow become my most flexible day – no yoga, no chiropractor, no salt cave. Nothing. So I can do whatever I want (within reason – I’m usually pretty tired on Mondays). Today I’m hoping to get the cold plunge up and functional, perhaps find some doctors and a vet for Eli. Maybe transfer the football tickets from my Dad’s name to mine. Who knows. We shall see.
What I do know is that even in the short time we’ve been here instead of there life has changed. We have changed. And that’s so interesting to me. The idea of falling into a routine and then becoming something different … almost indescribable but also true and authentic. A new me has molted from the old me. My life, the mark I’m leaving, is changing shape.
Anyway. That’s me today.
Xox, g
13 mars 2023
I sat next to a man this morning who spent some time expressing his thoughts on youth today, finishing huffily with “And I have cancer, boy-o.”
At first I thought Man, you’re one of those guys. While rolling my eyes. Because it seems to me that when someone expresses an opinion, a justification of why their opinion is correct is also always presented. In this case, this man’s issues with differing opinions than his own were dismissed because they were wrong, but also, his life experience clearly outranked anyone else’s because he’s doing all his living with cancer.
And then it occurred to me that so often, we are all so angry and frustrated and believe everyone else has it so much easier than we do because we assume we are the only one struggling.
Wouldn’t it be better if we assumed everyone was struggling with something? Because it gives grace, but also and more importantly (and most likely) it’s true.
It *would* inherently mean that we would have to acknowledge that our suffering is not above and beyond, that we are not inherently superhuman for managing to human while *also* dealing with our personal maladies.
***
I go back and forth on toxic positivity and ableism. I’ll own absolutely that as a person with a chronic illness, who sometimes struggles mightily to walk, I’m absolutely an ableist. I know this because every time my aunt talks, I hear again and again what I grew up with, and I realize that un-learning that will be a lifetime effort for me. A few weeks ago, she casually accused me of ‘loafing around’ as though managing my energy and my ability with my MS equated essentially to laziness. And as much as it stung (and as much as I haven’t gotten over it) I know that in her world, as in the world of my British grandparents, not being in motion implied without reservation, that I was being lazy. (Side note, I was actually taking Eli on a walk, so I wasn’t even home — but she assumed since I wasn’t visible, since where I was and what I was doing wasn’t immediately accountable — that meant I was off somewhere being lazy).
When I think of my family – particularly my mother’s side of the family – I feel sad because all we’ve ever done, my whole life, is present a ‘public face’ to the world while keeping our trauma and our hardships efficiently and resolutely hidden. Health issues, emotional struggles, life hardships – no one talked about any of it and when I finally got wind of something, it was sometimes years later, after everything was over and done. And even then it was whispered about it a shameful manner.
What a disservice that was to my mother, to my father, to myself, my brother. When I was diagnosed with multiple sclerosis I don’t remember talking about it openly at all (to be fair, my mother had also recently been diagnosed with stage four cancer). I grew up with a cousin whose illness was never discussed (I learned last year that she is bipolar. I’m 43). My grandfather’s stay in a hospital when my mother was young is still hazy — was it for PTSD from WWII or was it for alcoholism? I couldn’t tell you. It was probably both. My family is cagey and in-direct. And so, so British.
***
Anyway. I think my point is that every person is struggling with something. We have been fed a toxic lie of perfectionism that just doesn’t exist. And it never, never did. So we are all trying – in our own ways – to be something that is completely illusive. It isn’t real.
What I like most about how I deal with my MS now is that I’m pretty open and direct. I don’t have to remember who knows what because nothing is a secret (although I rarely tell my MIL anything because by the time she’s done telling the whole family, I’m dying tomorrow and it’s unlikely they will ever see me again. Which is its own, special kind of exhausting).
Today I’m sitting at Fox Chase Cancer Center. Hubs is having a tumor ablated. I’m listening to Andra Day’s “Rise Up” on repeat (I’ve done that for both his previous surgeries and it works for me). My legs are shitty – that’s what happens when I’m stressed out. I worry fleetingly about what people here are thinking of my stilted, teetering walk, and then remind myself that they have their own burdens to carry (it’s a cancer center after all).
Two more hours and hopefully I can see husby.
Xox, g
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
2 mars 2023
I keep thinking that I will somehow get my life organized … tomorrow. But then, tomorrow arrives and everything is still hectic and busy and I’m still digging in Tupperware containers trying to find a shirt *I know* I own and yet cannot find … and then tomorrow and another tomorrow and all of a sudden it’s March and life is steamrolling along and I’m getting whiplash trying to keep up.
It is not for the faint of heart.
I think of my mother often, and how she managed to move us every few years, just packing and unpacking and also driving us to sports and activities and smiling and listening … and I feel overwhelmed with a fatigue that seems deeper than MS fatigue (which I did not think was even possible).
A few days ago husband and I were in Philadelphia for an appointment at Fox Chase Cancer Center and we also had to take the Volvo to the dealership for service (the dealership near our new house closed and the closest one is two hours away so … West Chester it is). And somehow, our timing worked out and we snuck up to KoP and into the Apple Store to look at iPads.
I didn’t really know I wanted a new iPad until I realized that my computer is about nine years old and my iPad not much younger, and all I craved was tech that reliably worked for the things *i* needed it to work for — not husby, or work, or what I read online somewhere. But actually, truly, what I was needing. A place to write that travelled with me. That allowed me to watch a movie or two if I so chose … it sounds trivial and small and something I could figure out with any of the other devices I owned. But for some reason, a new piece of tech, that was all mine, for my use purpose — and not a computer that I was given by work or an iPad that was re-homed when hubs got a new one …. It felt too intriguing to pass up.
And so today, I am finally sitting down and typing away at my new iPad. No, I didn’t get a laptop. I don’t need a laptop. I need something that’s easy to use and a keyboard that is comfortable to type on and something that has a bit of memory for everything I’m not storing in the cloud.
She’s beautiful and I love her and I look forward to many years of happy companionship between my iPad and me. And now I have written a bit, even though it’s trivial, and I have marked the occasion. So I feel at peace.
Now, off to see Creed III.
Xox, g
10 fevrier 2023
Time is so tricky. It feels so long … and then as though it slips through your fingers like grains of sand in an instant. It heals, but also, sometimes it freezes and is inescapable.
I was thinking about this yesterday. My mother died over four years ago. Which sounds like a long time — it *is* a long time. But it’s also as though time completely stopped when she died and began again in a completely different way. As though my life is divided into two distinct periods – one when my mother was here, and the other when she is not. And they cannot bleed into each other, they are not the same.
Sometimes the pain is as though it happened yesterday. Everything still lives so clearly in my mind – the hospital, the doctors, the nurses, the sounds – beeping and plastic furniture, clog shoes on linoleum floors. The pile of her clothing that she would never wear again, that we would carry home like a pile of hopelessness, a pile of things that no longer had any purpose. Confused as to what to do with it – where to put it. And then remembering that it happened so long ago, and that coat and those shoes are long gone. Cleaned out by Lenny in her fervor to check boxes, to keep order.
I am two people – the human that my mother molded and encouraged and taught. And the human who has had to forge herself – alone and cold in this world. No longer protected by her mother’s unconditional love.
I cling to small things that bring me joy – hot chai tea lattes and fresh cut flowers. Clean sheets and jars and jars of skincare. I vacillate between strength and weakness, confidence and insecurity. I wonder – often – who I am. What is real and what is concocted out of a basic need to survive.
February is here and the days are a little less gray and we are a little closer to our home being built. And I am a little less sad and a little more tired.
Xox, g
27 janvier 2023
Having MS sometimes feels like a life of quiet desperation.
Right now I’m in the throws of it, having struggled quietly for weeks. Not sure exactly what’s wrong, not sure how to fix it. Just picking up the pieces and mending everything over and over again. Sometimes I feel like I’m losing my mind. I wonder when I lost it …. Was it fast and I just adjusted on the fly or has it been slow- little bits over and over again until I look in the mirror and don’t know myself anymore. Don’t know what to say or do. The weight of life pressing unrelentingly on my shoulders.
If you look up multiple sclerosis, amongst all the technical stuff (myelin sheaths etc etc) is usually a list of ‘probable’ symptoms. But as every article says, in one way or another, no two people’s MS is the same. So the symptoms vary, the severity varies, how each of our bodies react is different. Treatments, therapies … it’s all sort of a crap shoot. When you find something that works, hang on for as long as possible. No matter the potential side effects. Just keep doing what you need to do to live. I mean, that’s the gig.
I write a lot about how life used to seem black and white to me. And then I got MS, and everything became a blur of gray. Living in the gray was and continues to be uncomfortable. It makes me angry. I have good days and bad days and I ebb and flow between hopeless and hopeful. I smile a lot when I don’t mean it because it makes people uncomfortable to have to face my realities. It’s easier for healthy people to take me at face value and not lose any sleep. Besides, they have their own troubles, their own difficulties.
It’s fucking lonely.
I don’t know how to be a caretaker or a support person because what I used to think was good isn’t good for me. And so I try desperately to have compassion and grace for the people who don’t understand, can’t understand. Being the sick person and being the person who watches from the sidelines — those are two very different roles. When my mother was dying of cancer I know that she suffered unbelievably in the privacy of her own room, by herself. She made Herculean efforts to appear to all of us as though she was okay. But I think I knew she wasn’t okay, and I didn’t say enough because I was trying desperately to respect her humanity. Even though I understood the indignities of being sick I didn’t understand facing mortality and I certainly wasn’t going to make any assumptions. I allowed that space between us out of respect for her -or so I told myself – but probably also for myself, because I didn’t know how to bridge that gap without fumbling and making untold amounts of errors. Would she have felt less alone if I’d said something? Or would it have made her feel more vulnerable? I am not sure. I don’t know.
Right now I feel let down by my body, betrayed and wildly out of control. I don’t know what signals are being sent, if I’m getting them correctly (neuropathy) or understanding. I think I know and then find out, I don’t. I’m so tired and so sad and resentful. And we are living in a tiny house where neither one of us feels as though we have any personal space, and Eli is in peak terrorist mode. It’s been a really rough January. We are limping into February, wounded and defeated. Everything feels impossible.
I wish that the sadness wasn’t so all-consuming. So utterly palpable. I wish for so many things. And sometimes it feels absolutely impossible to remember the good. To remember that time is the great equalizer. It will continue to tick by, whether I’m happy or sad or defeated or triumphant. And we will continue to move through this life, this one and only precious life we have been given.
xox, g
18 janvier 2023
Sometimes the sadness is palpable. I’m driving in my car, my beautiful, I-love-it-so-deeply car, and the sadness thrums like the bass line in a Billie Eilish song. I wish I didn’t get sad, I wish I could ‘fix’ it, but the truth is that after 43 years, I know that the sadness comes and it lingers and then it goes. And it’s just a waiting game.
Last fall was a whirlwind of quick decisions and even quicker action. We decided to adopt Eli, and then we decided we liked it in State College better than Downingtown, and then we decided to sell our house and then we sold it and moved more than half our belongings into storage and then we went to France because isn’t that what you do?
It’s hard to remember fully what the last four months of 2022 were. They were hectic and quick and hard and exhausting and rewarding and …. so, so fast. One moment we were shuffling through paint swatches to paint the walls and the next we were on our hands and knees with Magic Erasers, cleaning the base boards of all the stairwells in anticipation of showings. Suddenly our home of seven years wasn’t our home anymore. All the routines, all the comforts we slowly built disintegrated as we took down pictures and packed boxes full of kitchen equipment and office supplies and books. We wedged things into our tiny Bellefonte home, hoping that we could get a new house built soon. Then we picked a lot to build and made deposits and picked carpets and flooring and light fixtures and where all the electric outlets would go. We picked more things than I’d ever thought about in a house. We signed piles of papers and wrote the biggest check I’ve ever written. Then we packed up our truck, scheduled walks for Eli, and got on a transatlantic flight. We rode trains and hiked through mountains to see glaciers and ate indulgent French food.
And then we came home. And picked up a (much) larger Eli and trudged back to our tiny, stuffed home in Bellefonte, longing for our bed and our couch and our TV and our coffeeshop. And then, before we even got bored with this little moment of mundane-ness, we got *back* in the car and journeyed south again, for MRIs and medicine and doctors appointments, and Eli’s vet appointment to get neutered. Because in all the back and forth and packing and picking and planning and packing … we hadn’t gotten a new vet.
Tomorrow we drive again. For more meds. For Eli follow-ups. I’m not surprised I’m sad. I’m surprised I’m not more sick.
xox, g
17 janvier 2023
I blinked and fifteen days passed.
We spent over two days journeying home to America from France. First to Geneva, then Philadelphia via Madrid, then a night at Dad’s and then, finally … thankfully, we got home. Sleep in my own bed is like liquid gold. The soft snurfle of Eli curled up contentedly between us, the rhythm of our night time routine, the food we love in the fridge. So much cold water. Delicious.
And then more travel, doctors appointments, Eli’s little boy surgery to prevent any more little Elis.
I think I have a stomach bug but who knows anymore. My neurologist seems to be indifferent to the ebbs and flows of my health – as long as the MRI scans look solid, as long as my organs are functioning – all the other bi-products of MS are insignificant. Except, they aren’t insignificant to me. To my life. To the exhaustion and the fuzzy-headedness. The inability to function in a society that insists we be producing every moment of every day.
I’m so tired. I’m tired of being tired, I’m tired of explaining (with a smile and self-flagellation) the basics of my version of MS over and over and over again. I’m tired of feigning ‘okay-ness’. I’m tired of dreams slipping out of my fingers, of watching the time tick by slowly, unable to do anything except survive. I feel as though I’m drowning, slowly, sipping air every few minutes so that the agony never quite ends.
I’m tired of feeling alone.
I always wave it away, assuming I miss my mother and by default the loneliness cannot ever be assuaged. But I think I’ve always been alone. A little American girl overshadowed by a British family who never talked about anything, a family who shunned illness as though it was the worst of all deformities. A little American girl whose father loved her but didn’t quite understand her. Why isn’t she more British like her mother, his beloved wife? Why is she so … contrary?
Change is uncomfortable. I know this. I spent my life changing. Changing schools, changing houses, changing after-school activities, changing lives. It’s always uncomfortable because the unknown is uncomfortable. The devil you know is better than the devil you don’t. But why? Because the devil you don’t could be ANYTHING and at least the devil you know is a known quantity. Knowing is infinitely less scary than not knowing.
Walking away from a life – even one I consciously built – is what I do. It’s what I’ve always done. When things get too familiar, too comfortable, I get antsy.
This blog post is about nothing. It’s about this moment in time. Home from five days at my Dad’s house, finally back in a safe space – a space I can live and exist without having to justify or explain. That having MS is hard. And it’s unpredictable. And I can’t promise anything. Ever. That sometimes I don’t have the patience or bandwidth to be pleasant and nice and accommodating. That sometimes the bigotry and bias and lack of perspective is suffocating for me and I don’t have the forethought or inclination to sit silently by.
Did I mention I’m tired?
I’m so fucking tired.
xox, g
2 janvier 2023
I went to sleep last night knowing that there were two days of travel. Knowing that it would be hard and stressful and confusing and unnerving and all the things that travel is … but also knowing that I would survive it and when all was said and done, we would be home and reunited with our little boy.
I realized – upon revisiting the blog last night – that I stopped posting a few weeks before we drove to Honeybrook and adopted an eight week old puppy whom we promptly named Eli.
He turned five months old the day we flew to France and has been spending every day chewing my Dad’s shoelaces, going on walks with Bob (Erin’s husband – Erin of Zavino and Tredici days who began her own pet business last year) and curling up to sleep with my Aunt on the couch, all while enchanting everyone to fall promptly in love with him.
After today – fighting to get on the shuttle to Geneva and enjoying the most expensive burger I’ve ever eaten at the Geneva Hilton Hotel – and tomorrow when we fly home via Madrid and a four hour layover, we will be reunited with our tiny terrorist (and massive love bug) Eli Emerson.
The shuttle ride was a little over an hour and all I thought about was that it doesn’t do much good to look backwards. Time and life march forward and nothing and no one has ever been able to change that. The seconds tick into minutes tick into hours and then days ….. Life goes by bit by bit. And all we can do is appreciate the time we have, make the most of the seconds and minutes and hours and days.
Before we know it, we’ll have a brand new house in Bellefonte and Eli will be a year old and life will keep slipping by. The good times won’t last forever, but that bad times won’t last forever either. It all goes by, bit by bit. And all we can do is try to soak it up and enjoy it as much as we can.
That’s what I tell myself when the going is tough or rough or just overwhelming. This too shall pass.
All we have to decide is what to do with the time that is given us.
Xox, g
D5 Creation