February, 2021
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Day 59
One of my resolutions for this year was to read more, watch TV less. And other than the two days I was feeling really sick, I have maintained my goal of not watching TV during the day.
It has led to some truly great reading.
I have a terrible habit of starting a book, marking my place with a bookmark and then leaving it … sometimes for years. Case in point — beside my bed sit Empire of the Summer Moon, Failing Up, and Thanks a Thousand plus the US Constitution with selections from the Federalist Papers. I have begun all of them, and have made my way to varying points in them, but I have finished none of them.
On my shelves downstairs I have begun Beginners Guide to Insight Meditation, Tao Te Ching 101, Joan Didion 1960s & 1970s: A Collection, Meditations by Marcus Aurelius, The Yoga Sutras of Pantanjali, First Man, Becoming, Turn Right at Machu Picchu, The Wright Brothers, Notes from a Small Island and my current read Give Your Heart to the Hawks.
On my Nook … (this is where it starts to get embarrassing) The Vanishing Half (I was invited to join a book club and this is the first book!!), A Secret History of Witches, My Life with the Eskimo, How to Be Anti-Racist, Between the World and Me, The Goldfinch, and The Incendiaries.
And let me be clear … these are just the books that I’ve started to read. This list does not include all the books I own and have not yet cracked open.
I love to read. I have found that, as an adult, I haven’t been doing that much of it consistently. It has been my 2021 resolution to get more reading done and despite the Herculean list above of unfinished tomes, I have managed to complete American Buffalo, Why Buddhism is True and A Ride to Eternity (written by one of my Dad’s fraternity brothers about the murder of his aunt in 1939- painfully sad, bizarrely compelling and absolutely fascinating).
It isn’t that I don’t want to finish the books — it’s about finding the time and concentration in a world that has us (myself included!) trained to consume our information in sound bytes and 140 character click bait.
Hubs and I decided that we need to devote more time to reading because we both love it. (He always says, “I never regret the time I spend reading.”) Today has been spent nose deep in books, piano music on in the background, with lunch breaks and a Lucy bath thrown in for fun (well, maybe not for her!).
I feel supremely blessed to have a partner in life who loves and values the things I love and value.
Xox, g
Day 58
Once upon a time there lived a girl who believed she was much less than she actually was.
She spent years believing this story of not deserving and not accomplishing. She believed the people who both subtly and not-so-subtley reinforced the narrative.
And yet somehow, some way, she clawed her way out of the darkness and doubt and misery, and discovered that in fact, her life had more character and value than she’d ever thought possible.
This is everyone’s story. It is mine. It is yours.
We all believe we are less than we truly are; we deserve less, we are worth less. There are voices in our lives who confirm those things.
The voices are wrong.
I’m forty-one years old and I’m just now learning I don’t have to listen to those voices. I can straighten my back and lift my chin and walk away.
Life is about learning and growing. It isn’t always easy. But it’s usually worth it.
Xoxo, g
Day 57
Today was a crazily long day. In the end, it wasn’t a bad day. Things worked out – all went smoothly. But I’m tired, and I can’t wait to lie in bed and drift off to sleep.
it’s strange to think that in a few days, we will be in March. And then hitting the one year mark of lockdown. And then a full year since life flipped upside down.
Time is wild.
Xox, g
Day 56
Have you ever said a word so many times it loses all semblance of meaning? All of a sudden you’ve said … believe …. over and over and over and it stops having any shape, any definition. It’s just sounds — it doesn’t make sense anymore.
Or have you looked at a foreign word (not just Arabic or Japanese but any language that uses the Latin/Roman alphabet) and thought … this combination of letters makes no sense to me at all? (I have a lot because I’m currently trying to learn French — my sister-in-law is French and she speaks excellent English and I can say Une coke avec glas sil vous plait in French … and that’s about it). So many people on this planet use words that mean nothing to so many other people. It’s wild.
I was thinking about these things today while I meditated (probably rendering my meditation useless but ce la vie). There’s a line in Avengers: Infinity War that Thor says during his first meeting with the Guardians of the Galaxy. It’s sort of a throwaway line, but John and I love it. He says,
“All words are made up.”
How TRUE is that? I mean, if you stop and think about it, so much of the construct of our lives is just … made up. Not by us but by someone and it was adopted by others and then passed on. Words were created — seemingly meaningless combinations of letters and sounds — that were assigned to specific things. And so on and so on, ad infinitum.
We watched a movie recently about the first editor of the Oxford Dictionary and it made me think about the definitions of words in a whole new light. I’ve always taken the dictionary for granted but there was a time when there was not a comprehensive list of all the known words and their definitions. In fact, it’s only about one hundred years old (the Oxford Dictionary, that is). How wild is that? Something I’ve just taken for granted as always being available, always existing. Now it’s an app on my phone (a lovely, well-used one at that!). But not so long ago … well, the cataloging of words was the Wild West.
Anyway. That’s what’s on my mind the night before a day at the hospital being reminded how inefficient health care in the USA really is. Joy.
Xox, g
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 53
Truth.
We all tell ourselves and others stories.
We create our narrative. We edit. We decide who sees what. The stories share themes, they share broad brush strokes, but each story is different in the details.
For example, the story I tell my husband is drastically different from the story I tell my friends. My husband knows the intricacies of my days, the struggles, the coping mechanisms, the sadness and frustration, the joy and excitement. He knows what medicine weeks mean and when I need to sleep for fourteen hours. He knows how fickle my legs are, how vitally important Lydia can be. He knows how debilitating stress and anxiety are, how they wreak havoc with my entire physical wellness; he recognizes the fatigue and shoulders the burdens. There is raw honesty in the story I share with my husband.
The stories I share with my friends vary — I don’t want to trouble them; to appear to want or need pity. I know that some things are beyond the realm of comprehension — that there is too great a disparity between the appearance of me and the reality of me to reconcile. I can save them the weight, the awkwardness of not knowing how to react, or to feel uncomfortable, by telling a cultivated version of my story — one where I can meet them for dinner and walk around parks and go home and be fine. Wake up the next day and continue to expel multitudes of fathomless energy.
Who benefits from the struggles of my life? No one. I’d rather they be my own, I’d rather not have to share them, and fracture the facade I’ve created for myself.
But sometimes there are moments when nothing else suffices. Sometimes, I have to let down my walls, I have to share more of the story I live rather than the one I write.
It is humbling. It leaves me feeling vulnerable and exposed.
It makes the deep sadness of living with MS nearly unbearable.
Xoxo, 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 50
Welp! Fifty days!!
I’m a little proud of myself for sticking with this. I think it’s helped me clarify my mind and know myself better. I‘ve enjoyed that.
In the spirit of photo Friday, a little glimpse at the beautiful flowers that arrived for me last Friday. Roses & lilies. My favorites.
Life has taken some dips and turns this week, but every night I am grateful that I do this whole thing with John, and that we have created the life we have. It is beautiful.
Xox, g
Day 49
The thing about reading philosophy is it begets reading philosophy.
As a result of daily emails I receive I decided it was time to invest in Marcus Aurelius’ Meditations. And let me tell you, beginning something like Meditations (which is largely Stoic in philosophical nature) is very … interesting … when you are simultaneously immersed in a book about Buddhist philosophy.
Today’s chapters began the extensive examination of essence and the Buddhist concept of emptiness. I have been inspired to follow this up with something that delves into Hindu philosophy. Mr. Wright briefly touched on their attitude toward emptiness and it seems to resonate more with me than Buddhism. I guess the quest for enlightenment on any level never actually ends … because there is no true ending.
Sometimes, I look in the mirror and I don’t fully recognize myself. Some of this I attribute to cutting all my hair off about five months ago. Some of it stems from my quest for self evolvement. Is this woman staring back at me the same human who believed, at the tender age of eighteen, that one day, she would be as famous as Brad Pitt, the toast of Hollywood? It feels unlikely, and yet … they are one in the same.
When I stopped working four years ago I had no idea what I was going to do. I felt lost and confused. Bereft for an identity I tied – too extensively – with what I did rather than who I was. It’s been a strange and funny journey since then — weird and wild and painfully sad among a myriad of other emotions.
Reading philosophy — studying it and working it around in my brain — has given me something back that I thought was lost. And I can’t articulate it, and maybe that’s okay. Maybe that’s exactly what philosophy is teaching me. That just being is okay. That nothing really has to make sense … and what does that even mean anyway?
Xox, g
D5 Creation