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Day 55
I’ve heard that women almost immediately forget the exquisite pain that is childbirth. At least long enough that they are willing to go through it again (sometimes multiple times). They kind of remember. But not enough to dissuade them. And I’ve been told the pain is nearly unbearable.
I thought about that phenomenon this morning as I lay in bed, waiting for my alarm to ring.
Of course, I have no idea if it’s true or not, or how accurate it is. Because I’ve never given birth. But it made me think about the theory that everything we do as humans is driven by natural selection and the promotion of our genes to the next generation. Part of Buddhism — per my current read (Why Buddhism is True) — is detaching from the seemingly inherent pull of natural selection/acting in the best interest of our genes and instead detaching from those feelings; being an objective observer.
I woke up this morning feeling infinitely better than I have in days. And my first few thoughts included (but were not limited to) Ah, back to normal! Whew, I can actually get some stuff done today, Thank God my brain is working again and I can get a good work out in today!
The problem, as I got up and went about my morning routine (really intense stuff like skincare and laundry) was my assumption that this feeling — the one I had today of fairly good energy and the ability to function as a healthy human being — was somehow my “normal.”
That assumption has gotten me into loads of trouble across the eight years (and counting) of my multiple sclerosis. I think I feel better and therefore I can go back to overloading my body and mind and all will be indefinitely well.
Nope.
I’m the woman who just gave birth and then thinks it’s a good idea to do it again. Who forgets the pain and suffering of nine months of pregnancy and then pushing a watermelon out a hole the size of … well, woefully smaller than a watermelon. (This might be somewhat inaccurate … again, I’ve never given birth). The point is the same. Mild insanity.
Anyway, my moment of clarity today happened when I stopped myself and slowed down. When I considered that my life is just one big cycle of feeling good, overdoing it, and then feeling like death for a prolonged period of time, only to start it all over again.
How do I break the bad habit?
That’s a real question because I don’t know. I tried to be kind and gentle with myself today but I just wanted to DO SO MANY THINGS BECAUSE I FELT GOOD!!! It’s really hard not to take advantage of that.
I guess I just have to keep remembering the exquisite pain of overdoing it — the collapsing legs and the cotton-head feeling and the overwhelming and debilitating fatigue.
As my yoga teacher says, it’s a practice, not a perfect.
Xox, g
Day 54
Choice.
There’s an argument that we all control our destiny through the choices we make. And another that everything is pre-ordained, inevitable.
I think I’m a little bit of both schools. I like to believe that everything in my life comes down to the choices I make. John and I often talk about Father Sanderbeck (a priest at my father’s high school) and his words of wisdom. I grew up with stories of Father Sanderbeck, and John was introduced to him when he met my Dad. Father Sanderbeck used to say (among other, wise things) that you never make a bad decision; you make the best decision you could with the information you had. Sometimes that means when you (inevitably) learn new information, your previous decision can seem … ill advised.
But then again, it wouldn’t seem ill-advised unless you’d possessed the information that you DID NOT have at the time you made the decision. So …. there you go. Father Sanderbeck — the Dao of the House of Simone.
Anyway, other times I find it comforting to think I actually have zero control over my fate and that what was meant to happen will happen and there’s nothing I can do about it. Not having responsibility can feel wildly freeing.
Life though— life likes to keep me guessing. Like today, when I got a phone call about another job … and had to once again go through the painful process of explaining why I am unable to consider the offer. It’s like life wants to make sure I really, truly understand. Like the old adage that if you understand something, you can teach it/define it/explain it.
Life likes to make me define it. I have to laugh (otherwise I might cry and that’s really no fun).
I do — mostly — like to think we all have choices. Choices about how we feel, how we respond, how we choose to frame our lives. I could be really bummed out that our take-out tonight was completely wrong. Like — every single item was in some way incorrect. But that then leads to anger and disappointment and anxiety and stress. Instead I chose to focus on the good stuff — that it all tasted great even though it was wrong, we’d been wildly overcharged, and there was no course of action to rectify it.
Instead of being irritated that our Hello Fresh delivery was missing a recipe, I thought, Well, at least the recipe exists on the app and it’s less paper.
Instead of wondering why in God’s name the last few movies we’ve watched have been so effing depressing, I thought Well, at least I’ve now seen all the X-Men movies. (I’m not 100% sure why that’s a good thing, but let’s go with it).
I could continue, but maybe by now my point has been made. Anyway, it wasn’t the best day … or was it? I guess it’s up to me to decide.
Xox, g
Day 52
Today has been a tough day.
Yesterday was a really tough day.
Tomorrow there is snow on the forecast. Possibly the last big snow of the season.
Up, down. Good, bad. True, false. Circling, repeating. Never-ending.
I’m glad for the snow. Snow offers the reprieve of quiet stillness. Solitude. No pressure to do, act, participate, go. A break from the unrelenting quest for normalcy amidst chronic illness. Fatigue. Body failure. Gray days, snow, rain. For me, they equal peace.
And right now, I need peace. I need stillness. I need rest and routine. I need grace.
Xox, g
Day 40
I’m intermittently sweating and shivering today with a low-grade fever. So that’s fun for me (and even less so for John and Lucy who have been on their own because I’m out of commission).
Day 40 makes me think of Lent and finally being ‘done’ with whatever I’d given up. Day 40 was Starbucks again, or a glass of wine. Today, Day 40 is just another day in a long string of days. A Tuesday.
Here’s where I’m at —>
I wanted to give up social media (specifically Instagram) because I felt as though I was giving it too much time. So far, I’ve been successful at not hitting up Instagram. I’ll go back eventually (I know that in this day and age, one has to be on social to know what’s going on). But I want to know that when I go back, I won’t be so drawn to it. That’s going to take a little more time off.
I wanted to write every day. I’ve done that, even if it’s been here (on the blog). I needed to find a way back to my creative side but also find some discipline.
I failed miserably at giving up Starbucks. That’s for another day, I guess.
John + I had other ideas for the new year – reading more, being better about mealtimes, etc. We’ve been … better. Until this week (& feeling like death) I’ve been pretty good at not watching TV until 6p (at the earliest) during the week. I’ve read more. I’ve written a letter (hopefully more in the future). I haven’t had alcohol in 421 days, so that’s a record (in my adult life). I don’t really miss it, which is nice. I already feel like death so often — MS + age is a terrible combo. I don’t need alcohol to help me out.
I think there are more things that we resolved to do, and if my brain wasn’t a complete jumble right now, I’d list them. Needless to say, we’re doing our best to live lives that make us happy. Some days we succeed more than others, but in general we feel pretty good about where we are. We cook together, we take walks, we get sleep. Those are all good things. Maybe we’ll travel again. Maybe we’ll get the vaccine. We hope that happens sooner rather than later, but who knows?
Right now I’m just tired and I’m going to start dinner before I fall asleep again.
Xox, g
Day 38
Today was a beautiful day.
We had very different plans for this weekend. We’d booked a cabin months ago to visit Mansfield but decided after our last visit that we needed to figure out a new way to approach our trips to John’s hometown. Then we planned to spend the weekend with friends in the Poconos. Weather tripped us up on that one.
Instead, we spent yesterday with my Dad and aunt. We brought them pastries and we all went out to dinner after watching Jordan Spieth play some great golf.
And we woke up at home this morning, the snow falling thickly and quietly. It was stunning.
Sometimes — often, actually — plans change. And sometimes, there is beauty in the chaos, the disappointment. Yesterday was a good day and today (even though I fell and hurt my knees yet again) was a good day. Can’t ask for more than that.
Xox, g
Day 32
Sometimes, it’s stark the clear difference between what is imagined and what is reality.
I dreamed of sitting curled up in my new reading chair (aka, Lucy’s chair), sipping a hot beverage, reading my book as the snow gently fell all afternoon. I thought maybe I would write a little because the mood just seemed as though it would be conducive.
I *am* curled up on my reading chair, I *have* read some of my book. But it’s been another strange day — even the snow has been strange. Sometimes clattering against the windows, sometimes so fine it’s barely visible. Sometimes swirling and dipping as if a squall has taken hold. I haven’t been able to settle my mind, my thoughts, my self. I’ve been intermittently hungry, thirsty, cold, uncomfortable and needing the use the bathroom. There has been no rhythm.
I feel beaten up with no discernible reason to feel so; raw and skittish and afraid.
Once, a long time ago, I sat on a park bench on a cool summer evening. The trees were green and the sky was clear, the stars twinkling. My friend and I had gone to dinner and were just sitting there for more time to talk before the evening eventually ended. He and I had recently graduated from high school and I thought we’d be friends forever.
We talked about many things that night, but there are two that still linger in my brain, twenty odd years later. He said character was who we are in the dark. And then he said, the only that that is constant is change.
We aren’t still friends, which makes me feel a touch sad at times. He went on to become a professor of philosophy and has published several books. He seems happy — what I can tell from the distance with which I now see his life.
But he profoundly changed how my mind worked that night.
And as I sit here today, the weather unpredictable, John’s schedule unpredictable, my legs … unpredictable. I think about those two things … character is who I am in the dark. Or perhaps, just alone, without any witness. And even though I cling to routine with an iron grip, the truth is that life will keep changing and morphing. And what is up will one day be down. John will change and evolve and I will change and evolve and we will grow and change together.
The more I fight the change, the harder I make it for myself. I need to just breath deep, and enjoy the ride.
Xox, g
Day 31
At times, January felt like it might never end. And yet, here we are because time keeps marching on without care or worry to the contents or the state of the world.
John began the second half of his fiscal year this past Monday and everything in our house has felt crammed and stressed and stretched and pressed and intense since. Even this weekend felt upside down and strangely not relaxing because the shadow of what’s happening at his company is just lingering in the background of everything.
We were supposed to have brunch with my Dad and Aunt this morning but it was cancelled due to weather. Snow began midday and hasn’t really stopped, although the accumulations seem small compared to how long it’s been consistently falling. We shoveled tonight, took Lucy for a walk. Came back inside, and prepared to start all over again tomorrow.
The snow isn’t supposed to stop until Tuesday morning but weather forecasts are fickle so we’ll see how tomorrow plays out. John will begin his day at a dead sprint again and has already prepared us both for another intense week.
I’m not sure what I’ll do tomorrow (outside of my usual). I’ll do a Sculpt class and some Peloton classes. I’ll do laundry and wash sheets. I’ll balance our checkbook. I’ll eat oatmeal. If I’m very lucky, I’ll get to read some of my book (Why Buddhism is True which I am very much enjoying). And then we’ll have scallops for dinner (because that’s our last Home Chef meal in the fridge). And we’ll go to bed and begin all over again on Tuesday.
I wanted the snow to feel magical today. I wanted to feel … something, anything. But it was a strange day, filled with low level anxiety and dissatisfaction. We both felt it.
Maybe the start of a new month, a new week, will help freshen up the current vibe. Who knows?
I know we have successfully survived January. And right now, that feels like something.
Xoxo, g
Day 30
As the month winds down, I find myself losing track of my resolutions. As though I’ve reached the finish line.
I have to keep reminding myself that the end of this month means nothing, really, in terms of the promises I’ve made to myself. Just days, preceded by days, followed by days. It’s anti-climactic.
***
Today was a weird day. We had plans … which we should have known would change and morph so many times that the day would end up looking completely different than we’d imagined.
But once again, we didn’t realize it and it was a frustrating exercise in lack of communication and two types of polar opposite people — those who plan and follow through, and those who live a little bit more … spontaneously? Yeah. We’ll say that.
Anyway. I ended up spending some unplanned time reading this morning as John made flies (Santa brought him all the fixings for Christmas, but he hasn’t been able to find time to pursue it until today). Nearly a year ago my yoga teacher recommended a book called Why Buddhism is True and while I purchased it at the time, I hadn’t sat down to read it with any degree of focus until now.
It blew my mind. It’s fascinating and terrifying and pushes the boundaries of the mind (I’m assuming for anyone who has not extensively studied Buddhism before endeavoring to read it). I’m loving the added perspectives it has contributed to my always-evolving life view.
I am also loving the conversations it has inspired between John and I, as I attempt to explain what I’ve just read (I learned that I understood more of it than I initially thought -which pleased me very much). It’s fun to have big conversations about ideas and theories every once in awhile — it breaks up the usual talk of work, Peloton rides and Marvel movies/shows. (Although, side note, WandaVision is everything I hoped it would be, and more!).
I like reading because even if it’s “just” fiction, it changes and expands my mind and I like the feeling of learning and growing. I read A Man Called Ove last summer and the themes and story of it still haunt my thoughts sometimes. It was incredible.
I’m such a book nerd. Haha! Happy Saturday, friends. I hope yours is a good one!
Xoxo, g
Day 25
Today was the first day of the second half of John’s fiscal year.
I don’t know much about corporate norms other than what I have learned vicariously through John, but today began a new weekly series of calls that he must be on every week. And they begin at 8am.
He doesn’t mind (and I certainly don’t … it doesn’t really affect me at all) but I am always intrigued by such early, mandatory team meetings on a Monday (or a Friday, when John has his other big round of calls). I mean, yes, in terms of the work week, it definitely makes sense. Start the week and end the week prepping/recapping business. But whew, 8am. That’s an early start for corporate America (based on John’s prior company policies). When I was gainfully employed I held our manager’s meeting on Tuesday at 10a (which I know was a struggle for some of my employees because … well … they either didn’t get there in time or didn’t get there at all…). However, that was the restaurant industry. For me to be prepared by 8a on a Monday would either require prep work on Sunday or getting up *very* early on Monday morning. John does the latter, because he refuses to work on weekends unless it’s *absolutely* necessary. It isn’t so bad (I guess) as it jump starts his week … but what a way to begin! There’s no easing into work with that call schedule!
As non-drinkers and early to bed people, early on a Monday (or a Friday) isn’t wildly challenging for him. I mean, the man wakes up at 3am voluntarily to fish and hunt, so he’s not unfamiliar with the morning. But I wonder about all those people who might have stayed up too late or had one two many cocktails … and I feel hungover just contemplating it. I have flashback memories …. ugh. Woof!
Anyway. He’s been busy all day and that’s a pretty regular Monday for us. I have a policy of never missing a Monday workout, and I made a schedule for housework when COVID began because time can be tricky (and also it’s easy to forget!). So Mondays are go go go for us. Coming off another headache week I was pleasantly surprised that I wasn’t as behind with all my chores as I’d dreaded. I dragged my feet with workouts but I got them done, so that’s what really counts and now, after blogging, I’ll head downstairs to figure out dinner and read a little while John hits the gym. I might even make some cookie dough batter for ginger cookies …. We’ll see.
Today falls into the column of “I had a lot of thoughts this morning but by the afternoon the fatigue has erased them all” blog post. Maybe tomorrow will be better.
At least the laundry and the banking are done.
Xox, g
Day 23
I try to write before the end of the day because by now, I’m tired and all I want to do is go to bed. But I made this promise to myself, this New Year’s Resolution. And I’m not ready to give up just yet.
So here I am.
Last night we wrapped our evening at 8pm because I was just emerging from headache hell and I couldn’t keep my eyes open. I slept for nearly eleven hours. My body was wiped.
This morning we lounged around the house, reading books, listening to vinyl, talking about life and philosophy and the “Big Questions.” I feel immense gratitude that J+I have these kinds of conversations regularly because if he wasn’t here to talk to, I don’t know what I’d do. I thought, while we talked, what great seeds of ideas it all was for a blog post. But now, tonight, as I sit here, my mind is blank.
Being ‘sick’ is exhausting. It’s unrelenting. It sneaks up on you when you let your guard down. It’s tiring — which is a completely different thing than being exhausting. It’s … it’s just really hard. And it never stops. And that wears a person down.
Sometimes I’m at a loss as to how to rest enough to feel recuperated.
But I’m here and I’m typing and I’m editing sentences as I go. So, there’s something in that. I didn’t miss another day because I got distracted by lethargy.
Xox, g
D5 Creation