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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
Day 48
”Try not to become a person of success, but rather become a person of value.”
~ Albert Einstein
Every winter/spring, I go through what I affectionately refer to as my self-help phase. Perhaps as a way to begin my year by very intentionally learning and growing. Pushing boundaries. Perhaps because as the old year comes to a close, I find myself wanting in certain areas. Perhaps because not only is a new calendar year beginning, but another year of my life begins each December. I’m not sure. What I am sure of is my desire each January to keep chipping away at myself, in hopes of revealing my inner David. (Pardon the Michelangelo reference, but it’s one of my favorites).
The above quote is another of my favorites because it reminds me that my actions and choices should not be guided by financial (or any other kind) of success, but rather by the pursuit of being the best, most well-rounded human that I can be. By creating, within my being, a vessel of value.
In that vein, I am working my way through Robert Wright’s Why Buddhism is True and it has – to this point – profoundly affected me and my worldview. To be fair, I began it a loooooong time ago and found my way back to it this January. Maybe I needed that time away to gain perspective. I’m not sure.
To help clarify, let me begin at my beginning.
Every night (nearly every night) and most mornings, I sit down on my bolster, next to my Buddha statue, and I meditate. At the beginning, I really didn’t know what I was doing. I’d wanted to begin meditating for a long time (every one said it was so great!) but didn’t really know how to start. It all felt uncomfortably disingenuous. Last January I began yoga teacher training, and meditation was a big component. And thus, my practice began.
Even during teacher training I wasn’t really sure what the heck was going on, and I was pretty resistant. Not purposefully, but it’s inherently within me to resist (I’m working on it). So it was really Covid and being stuck at home that brought me to the meditations on Peloton. Even then, I was skeptical.
Meditation is this thing that for me had a lot of baggage about what it should be and how it should feel. And I didn’t get it or feel it so I kind of dismissed it. Books and magazines and my yogi friends all espoused its transformative power but to me … it was just … overly burdened with expectations.
Even so, I dutifully kept at it, thinking that with repetition I might finally clue in to the big deal.
There was a moment late last summer when I said to John, as I padded back to our bedroom, that I could feel the difference between nights I meditated and nights I didn’t but I couldn’t articulate what it was … I could just feel it.
I think that’s the thing with meditation, and it’s why I’ve struggled for so long. I need to be able to define it, to give it words and form and shape … and meditation is essentially formless and shapeless.
That’s what Why Buddhism is True has given to me if nothing else (and it’s far from nothing else). It has validated my inability to adequately describe meditation, its ‘instructions’ or really anything about it. Other than to say I do it, it makes sense and I feel its benefits.
Which brings me back to Albert Einstein. I think meditation serves as a tool to help me be a better version of myself — to continue developing my character in order to become a person of value.
Xoxo, g
Day 47
If a tree falls in the woods, does it make a sound?
This is an age old question. When I was younger, my automatic answer was — of course! As I’ve aged, the answer gets more illusive. Does sound exist if ears do not exist to hear it? Is sound a by-product of the ears? As in — if our ears were constructed another way, would actions produce the same sound/noise? Would a cello sound like a cello … or would the sound manifest differently?
If no human ears are present in the woods when the tree falls, is the noise the same, different or non-existent?
Thoughts.
The same principle can be applied to many things. The one I have been thinking about a lot recently is this — if I don’t post about the roses my husband sent me for Valentine’s Day, did the roses exist? … And in turn, if I am not posting about the minutia of my life on social media, does my life have value? Is value derived from applause?
There are arguments to be made that it does. We seek approval, we seek praise — those are good validations of our existence and they can be achieved by merely posting photos (and the occasional video!) on social media and then counting the number of hearts (or thumbs up or whatever). I can successfully quantify my life via social media.
Should I? Is it healthy? Is it necessary? Is there more value to a life lived publicly for approval and validation than a life lived within the four walls of one’s house? Solely for the pleasure of oneself?
Giving up social media has made these questions front and center to me. I find comfort in just existing without strangers reinforcing my life choices. But sometimes, I also feel lonely. As though I need that validation to continue existing happily.
Forty-seven days in, and I’m wondering if I’ll ever go back.
Xox, g
Day 46
Life ebbs and flows. My days ebb & flow. Sometimes up, sometimes down. Sometimes a blur. The older I get the more I see the rhythm and accept it, rather than fight it. I will have good times. I will have bad times. There will be much in between.
Today felt like a sprint from the beginning and my head was filled with nagging, irritating thoughts. So much time is wasted with worry and anxiety and anger but it’s hard not to fall into the patterns of replaying conversations and situations. It makes me think of samskara — something I know very little about but read of in The Untethered Soul. Feelings, memories, things you can’t let go; they just replay and replay and replay and circle and linger. There is no satisfactory outcome. And so they are very present, just below the surface, in and out of conscious thought.
My homework from my last therapy session was to re-write the story I tell myself. It has proved to be much harder to do than any previous homework. In re-writing my story, I’ve come up against some ingrained parts of my nature that are difficult to overcome or change. Or even reconcile. Often it has left me deep in thought, wondering why I’d accepted so many things that have been status quo in my life.
It’s much easier to uplift other people than to uplift yourself. It’s the hardest self-help work I’ve ever done. It feels like a slippery slope with no end and no beginning. Just struggle and battle. I’m perplexed. I’m exhausted. I am learning and in that learning I am hurting at the hurt I have inflicted upon myself. At the hurt I have endured and allowed as acceptable.
It is hard.
Xox, g
D5 Creation