January, 2023
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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.
D5 Creation