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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
1 janvier 2023
Three years ago John and I travelled to Japan after Christmas and spent the first anniversary of my mother’s death climbing and exploring Enoshima. Then Covid happened. And this was the first year we could travel again. We booked a trip after Lucy died and before we spontaneously adopted Eli, to spend Christmas with my brother and his wife in France. They’d just bought their first French house and John’s company shuts down between Christmas and New Year. It felt fortuitous.
It’s been an incredible trip and we are now packing up and readying to begin our two days of travel home. It’s trips like this that remind me I should journal more. And since I don’t have anything else to write with, I popped open this blog and decided to stretch the writing muscles again.
We spent today with a very hungover Dave and Jojo. We had lunch and went for a gorgeous walk. And wound down the evening in their cozy kitchen, eating bread and cheese and anchovy cream. We talked about life and relationships. We talked about four years ago when Mama Bear died. It’s not something we talk about a lot. We allude to it. We acknowledge it. But today we talked about it. The awfulness of losing a mother. The shit way it happened. The pain, the memories, the *lack* of memories. It felt nice to have those conversations with my brother – the person who has been witness to my life the longest. The only person who shares some of my memories. The only other one whose mother was also mine.
Earlier this week we talked about South Africa. I don’t like talking about South Africa. But it also occurred to me that Dave and I have never talked openly and frankly about what happened. And it felt cathartic. Necessary even. Jojo’s eyes widened at some of the pieces of the story. John looked solemn. We relived it but we didn’t. There were truths that were shared. It was important. It is a part of our history.
The same can be said of when Mama Bear died. We needed to talk about it. Between the four of us. Without censoring or editing pieces because of the pain of Dad or Lenny. Just siblings and spouses clearing the air about that time. Confessing the pain and blurriness. The quickness. The bottomless sadness.
All in all it was a good start to a new year. I feel closer to my brother and my sister-in-law. I feel honored to have seen and experienced the life they have built in this beautiful mountain town. It was a worthwhile trip for a million and one reasons, but that part – to me – is the most important.
7sept22
Today was another doozy. For completely different reasons and I *did* make it to yoga (thankfully). But yowza. My left shoulder is screaming, my whole body feels heavy and my legs are a mess. Thanks, MS.
Family is a weird, tricky thing. You realize, when you’re forty-something (in my case forty-two) that everyone is always winging it all the time, even if they proclaim authority on a matter. Everything is an opinion, a perspective, and you’re just kind of bobbing around trying to make sense of it.
But family is family. They are the people who are still around after all the shit has hit the fan. They are the ones who want to be miserable with you on holidays because that’s what is done. It’s exhausting and irritating and also, strangely comforting.
People love you but show it in strange, incomprehensible ways. They assume you understand but you absolutely do not. At all.
I’ve cried too much today. And I’m woefully behind on my to-do list (like f*cking always). I’m tired and hungry but I wonder if I’ll sleep tonight.
Oof. I miss Lucy.
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
24822
Today has been up and down and all around. I left the house early – lots of appointments – and as I drove next to the train tracks I thought about how grateful I am for my life. That despite the hard stuff – health and family and money and blah blah blah – it’s a pretty good one.
And tonight, as I finally sit down to do the pile of things sitting and waiting patiently for me on my desk – I’m fairly certain that my head may explode. Imminently.
I ran out of time again today. It’s time to make dinner and I haven’t done anything I wanted to do. Which isn’t necessarily true – I went to Movement Paradigm and I went to yoga and both of those things feed my soul. But I didn’t get much done towards my meeting tomorrow. And all I want to do right now is make dinner and sink into the couch as the sun sets, watching “Ted Lasso” for the fourth time in a row.
Life is hard. Family is hard. Relationships are hard. I wish we took more responsibility as humans for our part in how life unfolds at our feet. I’m pretty certain that I own most of my shit (although probably not all of it) but the number of people I deal with on a regular basis who seem to think that the world owes them, or someone else will fix their shit … it’s a lot of people and it’s *mind-blowing.*.
I think I am going to go cook. Brown rice and artichokes and some beans and chicken. And watermelon for dessert.
At least I wrote for the first time in weeks – even if it was to complain about life and my terrible attitude.
Argh.
Xox, g
09822
Today is my first foray into the pain medication my new neurologist prescribed for migraines. My last headache was a little less two weeks ago and I knew that yesterday was it’s next scheduled arrival.
I tried to play it cool. Paid close attention to what I ate. Drank a ton of water. Managed to *not* eat peanut butter out of the jar. (Sounds weird, but that’s a true triumph for me). I could feel the signs in my body – the tightness in my left shoulder, radiating up my neck and around my skull. The sensitivity of my skin, the discomfort in my jaw. I felt the acid rise in my stomach, churning and rolling. But the headache pain never came.
I took my preventative pill before bed. I prayed for sleep.
I took my Invisalign out around 3am. I clench my jaw something fierce because of those mouth pieces, and that clenching just feeds into the headache. That still wasn’t there but I could feel it lurking beneath the surface, waiting, waiting ….
When my alarm went off for yoga this morning I knew in every fiber of my body that I didn’t want to go. I was afraid – afraid of the pain I knew was coming. Afraid of the headache that would take residence and not leave for days. I rolled over and waited. I waited but it didn’t come.
I went to class.
There were moments – like waves lapping the shore – when the pain peaked through. As I flowed and sweat and wobbled my way through balancing postures and vinyasas. It was there. I felt a small relief. Because I’d known. All the signs were pointing that way.
So when hubs and I got home, I popped my first pain pill. I’m absolutely terrified. I am afraid of the side effects and I’m afraid it won’t work. I’m afraid the pain will come and it will rage longer and harder than normal, just to let me know that it’s in control, not me. I can feel the tension building in my shoulder, twisting in on itself. I try to breath and relax but relief doesn’t come.
I hope the pill helps.
Xox, g
D5 Creation