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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 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
Day 42
I wish I had something really good to write about today.
Because, honestly, I’ve found myself blogging once again right before bed, and my brain is mush and all I really want to do is wash my face, meditate and sleep.
To be fair, today was a wild day. I talked to more people than I am used to talking to, I had a job offer (and it rocks!) and I discovered a new author. Among other things. Yes, I know. Insanity!
Let me just say, if you aren’t a habitual reader, discovering a new author is like finding unexpected gold. It feels magical and exciting and strangely secretive. In the best possible way. Like when I found out that my Dad started to read Daniel Silva novels and we could finally share the joy of having read the same books.
Delicious.
Anyway, I discovered Joan Didion and simultaneously discovered that it was absolutely horrifying that I’d never read her – let alone heard of her! – before.
She is a seminal writer in the lexicon of United States authors. Her body of work is wildly impressive. And, it turns out, she also has MS. Almost like a footnote to her life. I absolutely love that.
Anyway, when I inevitably forget to blog tomorrow, or the next day, please know it’s because I’m lost in a book that is so exquisite I haven’t surfaced for air.
xox, g
Day 41
There are certain things that I find absolutely comforting. Porridge with cream and raspberries. Soy chai lattes from Starbucks. La Traviata on vinyl. Good skincare.
And, among other things, pretty much any Marvel movie.
Marvel really began it’s domination in 2008 with Ironman. I remember buying it on DVD at a Seven Eleven near John’s apartment in Manayunk and watching it with him on one of our few shared days off at the beginning of our relationship. I remember going to see The Avengers on July 4, 2012 — the day my MS began to rear its ugly head. I remember randomly watching Captain America:Winter Soldier during our apartment days and seeking it out to watch again. That was the hook for me. That movie, that character.
My love has only grown over the years (yes, I ordered tickets for Avengers: Endgame at eight in the morning nearly a month before the movie came out because I’d marked my calendar).
This past year I have found infinite comfort in Tony Stark and Steve Rogers and Thor and Nebula and Bruce Banner and Natasha Romanov and Carol Danvers …. When WandaVision finally debuted halfway through January all it did was give me more content, more things to ponder about the vast universe Kevin Feige is deftly building in film.
We fall asleep to Thor:Ragnarok a lot. We both know most of the lines. We both love this version of Thor and of course, Loki. And Valkyrie. Plus, it’s the turning point for Bruce Banner and the Hulk and it’s brilliant. It’s funny but also clever and important in the development of Thor & Hulk’s characters. It stands alone but plays beautifully into the arc of the narrative. And it’s not quite as heavy as Endgame (my other favored sleepy-time movie).
When I’m tired, when I’m scared, when I’m struggling … I always find comfort in Marvel. And maybe that makes me pedestrian. Maybe I’m not a film connoisseur, but I’m okay with that. Because life is too short not to find the joy.
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 35
Lemme be real for a minute.
Life for me is like an amusement park ride. There’s a lot of waiting, anticipation, anxiety and then there are highs and lows and everything happening in a rush … and then waiting again.
I don’t know if it’s the snow, or COVID, or just February. But lines are blurred and up feels down and down feels sideways and I’m just bouncing from wall to wall to ceiling to wall and then floating out the window.
I’m sad and I’m angry and I’m resigned and I feel trapped and overwhelmed by the vastness of it. I’m searching for comfort and finding none. I’m yearning for contentment but everything feels off its axis. I am drowning, I am floating … I am above and below and somewhere in between. I am lost.
That’s my brain, that’s my stream of conscious thought.
I keep grasping for an anchor and coming up empty-handed.
Listen to Miley Cyrus’ Plastic Hearts. It is my soul right now.
Xox, g
Day 34
Today was the day the music died in 1959 (I believe I have the correct year).
I learned that today listening to the radio. I don’t normally listen to the radio but I had to go to the chiropractor this afternoon. And I listen to SiriusXM in the Jeep.
It seems strange that a year ago, we lost Alan. So much has changed. Everything feels different; in so many ways, everything is different than just a year ago. Time is fickle like that. Global pandemics will do that, I guess.
Life goes on, but when you lose someone who is part of you, the way Alan was part of John, that emptiness is never fully healed. You just learn to exist with it.
Sometimes I feel the loss of my mother so acutely it takes the breath right out of my lungs. I wonder how I have managed to go on without her for over two years. I wonder how I can still be me … without her.
The truth? I am not still me — not the one who existed up until December 30, 2018. Just like John is not the same John who existed until February 3, 2020. That’s the way of things. That’s life and time and grief and loss.
xox, g
Day 33
I get daily Stoic philosophy emails. I was inspired to sign up by one of my yoga teachers, who was studying Stoicism (or just reading a book, I can’t remember) back when I still went to the studio three or four times a week for class.
Now I go zero times a week and I think my brain has begun to atrophy (evidence: my complete mental breakdown moments ago when John asked what I wanted for dinner and I didn’t know). I *really* miss social interaction and my yoga community. A lot.
I find the Stoic emails comforting and oftentimes enlightening (if only to give me a new perspective in which to frame life, thoughts and motivation). They are very matter-of-fact in their logic and their structure which I find comforting in a world that requires more and more interpretation.
Recently, one of the emails pointed out that Stoics believe that people cannot *make* us angry; rather we *choose to become angry. Which sort of dovetails with what I’ve been reading in my Buddhism book about self and not-self (and a whole manner of other, somewhat illusive concepts).
This logic, this proposition about our feelings actually made me angry. Mostly at myself for my inability to detach from my own emotions (that run rampant). It’s very frustrating to be sad and feel helpless and then be reminded that all the feelings I feel I am *choosing* to acknowledge and give power to. My Buddhism book distinguishes feelings from emotions — one being transient, the other more ingrained. I use the terms interchangeably , which just goes to illustrate how very far I have to go before reaching a state of enlightened bliss (or any enlightenment at all, for that matter).
Tomorrow is the first anniversary of my brother-in-laws death. I keep shying away from it, like avoiding looking at a cut that I sustained — using the logic that if I don’t look then it can’t that bad, it won’t hurt that much.
But pain doesn’t work like that. Pain is insidious, pain is subconscious and invasive and all consuming. It manifests in such a myriad of ways that its not always easy to identify. (Watch WandaVision for an excellent meditation on grief and pain).
Anyway. I’m a mess today. I’d like to go to sleep and try again tomorrow, but I don’t have much hope that tomorrow will be better. It will be the same as today … just Wednesday instead of Tuesday.
Xox, g
D5 Creation