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5jan22
There’s snow in the forecast. And I am so deeply happy.
About the snow. Otherwise I’m feeling a little off – tired and irritable and pulled in a million directions. I woke up tired and the whole day unfolded without whim or care to what I’d hoped it would be. Days like today can be soul-crushingly disappointing. Or they can just be ‘one of those days.’ I think it depends entirely on how mentally strong I’m feeling, how disciplined.
Today ended up being ‘one of those days’. Despite trending hard the other way early in the day. I did a longer than normal Peloton ride and John cooked up the last of our leftovers (someone — ahem, me— will have to grocery shop tomorrow. Which I love. So YAY!). We watched the season finale of ‘Yellowstone,’ lit all our candles and snuggled on the loveseat. Tomorrow hubs goes back to work and life begins again in 2022. I have medicine on Friday (likely to be interesting as our usual commute into the city is prime predicted snow time). Dora comes on Saturday (thank Jesus because the house is in dire need of better cleaning than I’ve done the past few weeks). And then Monday will roll around and we’ll be back in a rhythm — Lucy nosing us awake and our days taking their new normal shape.
Tonight we’re falling asleep to Fellowship and it’s painfully comforting. We speak it to each other, the lines so familiar, so known, that it’s like our own love language. I guess that’s thirteen and a half years of falling asleep with the same person. The other half of my soul.
Xoxo, g
4jan22
Last year I decided that spending time trying to think of blog post names was unnecessary. The point, I rationed with myself, was that I needed to blog. And I needed to do it more consistently. I could write about anything or nothing but I had to write.
Those are my parameters this year – I just need to write. I need to be consistent. I need to remember how to be disciplined. To introduce, provide content and then summarize everything in a tidy conclusion. Some of my posts last year did that – some were even good. What mattered to me was that they existed. That was all. And that’s what still matters — although the good ones do make me a little proud.
Today, as we drove from one house to another, certain thought patterns played over and over again in my head. Pennsylvania countryside sliding by, bright winter sunshine and frigid temperatures. Chris Stapleton in the background. I thought about how I didn’t acknowledge the new year, how I didn’t acknowledge Ben’s last Pittsburgh home game. How would people know that it mattered to me if I didn’t post on social? How would they know?!?
And then I reminded myself that people — whoever they are — don’t need to know and I don’t need to tell them. It doesn’t matter if strangers see a social media post of mine proclaiming a great afternoon lunch or a sports team allegiance. My life should just be my own and my joy should come from my own genuine enjoyment of whatever I am doing — without the need to tell the world and — either consciously o r unconsciously — ask for ‘likes’.
It’s a very hard lesson. I haven’t successfully learned it. I find comfort in the feedback — the public’s approval of my curated online life.
Blogging feels different for me – a little piece of my soul, my words. And people don’t read blogs anymore, anyway. Too much content, too much time commitment. Twitter is better – podcasts are better.
That’s okay. I find comfort in writing. I find comfort in screaming into my particular void — this blog, this platform that no one reads. (Well, I read it. It’s like re-visiting different versions of myself through time).
Anyway. We’re ‘home’. Y’know, our other home. Which is weird but also joyful. Tomorrow life revs its engine and Thursday it shifts into gear. Back into routine, husby back to work. Me back to trying to figure out what I’m doing and what I’m working toward.
Don’t worry, I’m figuring it out. 🙂
xox, g
2jan22
I sort of love the new Matrix film Matrix: Resurrections.
In anticipation of its release, husby & I watched the original trilogy. I confessed that I wasn’t sure I’d even seen the last film and couldn’t be sure I ever finished the second. We watched them anyway, because why watch a new film, years in the making, often denied even possible, if I didn’t understand the mythology that was the original Matrix? Film 101, right?
The first Matrix film is dated, obviously, but I know how revolutionary it was and I certainly respected -and quite enjoyed – its philosophy on life, its vision of the matrix we are all caught in. What it said about free will, control and power. The second two were less impressive to me — less philosophy and a rumination on the Matrix, and more a sci-fi story about a city in danger. I wasn’t sure — after watching them — that I would be up for the new film, but it’s me, so I knew I’d watch it regardless.
And then I began reading the articles. Interviews conducted with Lana Wachowski over email, Keanu Reeves and Carrie-Ann Moss discussing what brought them back, what intrigued them about re-entering the Matrix.
I was in.
Because I knew what it meant to lose someone and wish for them back so desperately, so intensely, that the grief never seemed to dissipate; it just clouded life, colored it in a new, inescapable way. I knew the comfort I’d found in early 2019 when Avengers: Endgame was released and -even though it was universally agreed that it wasn’t as good as Infinity War – I identified with its theme that anything —no matter how bad it was — could be fixed, reversed.
I wanted to see how Lana brought Neo and Trinity back when she couldn’t bring back her parents. I wanted to see how her grief informed the story of Neo & Trinity re-entering the Matrix. I wanted to see how she used the film, and all its perspectives, to help her cope with overwhelming loss.
I was not disappointed. I like its quirky self-awareness, the strategic re-casting of key players. I like the new additions and the new observations made about life and living. About energy and belief and faith.
Is it as revolutionary as the first Matrix?
Nope.
But to me, that doesn’t matter at all. It’s such an enjoyable ride, such a beautiful love story and tribute to characters, to a world created and destroyed and created again.
I’ll watch it a lot before it leaves HBO on January 21.
Xox, g
1jan22
Here we are again, at the start of another year.
Life is unrelenting … but it is also infinite.
I’m sitting on our bed in our second home, Avengers: Endgame playing on an iPad, husband scrolling, both of us exhausted from a day that began at a sprint and ended there, with little respite in between. Tonight is not much different than other nights, nothing much shifted from who we were last year (aka yesterday), nothing changed so drastically as to effect how we fall asleep at night. We are the same people, wearing the same pajamas, doing the same things, finding comfort in the same sounds, the same words. Doing the same routines – Lucy’s eye drops and my skincare and foam rolling. Teeth brushing and winding down. Today doesn’t look much different than yesterday because it isn’t.
Time doesn’t work like that.
I make resolutions every year but they are usually the same. A reset, a ‘get back on track’ reminder tied in the bow of a new year. In truth, most of my resolutions have happened on odd days throughout the year, when I’ve just decided to change and just decided to stick to it. January First comes with too much baggage, too much expectation, too much pressure to be something I am inherently not.
I will blog. I will stay off social media. I will ride the Peloton. I will work toward my goals. I will be consistent and simultaneously inconsistent. I will live.
Along the way I will learn and grow. My thoughts on life and the philosophy of living will shift, sometimes imperceptibly. And maybe next January First I will look back at this woman I am now, and realize that I have changed. I will be able to see the sum of all the small parts and hopefully — I will feel proud.
Xoxo, g
Day 361
It’s been a weird month.
This morning, a Monday, I got up, put on the same type of clothing I always put on (workout gear) and began the day. Even though husband has been laid up and living in his office for the past week. Even though there was nothing to do, nowhere to go. Even though I was feeling adrift.
And now, as I sit on the couch, sipping my chai as snow softly drifts to the ground, I feel at peace. Life isn’t easy. Life can be pretty unfair and difficult and destabilizing. I think I front-loaded a lot of my trauma — even MS doesn’t feel bad every day all day. But maybe it all has a little more to do with awareness than anything else. Being present, having the ability to realize that life *can* happen to me, or I can live. It’s up to me.
I am always tired. True. But not so tired I can’t live. And there’s maybe a little more planning and thought that goes into my travel, my movements through the world. But I get to do those things with husby and for that, I am eternally grateful. I get to do those things, full stop. That is a blessing.
Life is about learning and growing. And doing it the best we all can within the world we create for ourselves. I think I’m doing my best. I think I’m learning and growing and finding peace in my own truths, my own choices.
Xoxo, g
Day 343
Per Dr. M’s instructions, I spent today doing nothing (I knew – despite a long, long To Do list, that I was exhausted). I messed around with photos on the internet. I drank a delicious soy chai. I watched the first two episodes of “And Just Like That.”
And then I found myself staring at the ceiling in my gym, not quite paying attention to a Peloton guided meditation while testing out my new infrared sauna blanket.
PS. I know that whole last sentence is ridiculous. In fact, I thought about it while lying there.
As I lay there, trying desperately to listen to Anna Greenberg’s instructions to tense and release all the muscles in my body, I thought about what a weird wacky road I’ve been on. I’d say the last nine years or so, but it’s really just life. Not just MS.
There was a moment in my life that I was so broke I was crashing at a friend’s apartment, eating her peanut butter out of a jar and making biscuits with Bisquick and water (things readily available to me that cost zero dollars). I remember spending my last five bucks on a pack of Parliament Lights and going to a bar where I knew the bartender so I could get a drink. I ate fast food or whatever I could scrounge at the restaurant (I never worked anywhere with staff meals, but man that would have been nice). I slept odd hours if I slept at all. I had shitty friends and dated shitty guys. I mean, if you could call it dating. Or friends.
Today I have an infrared sauna blanket, a Peloton, a full fridge and a plethora of NA beverages (because I quit drinking almost two years ago and smoking many many years before that). I sleep 7-9 hours a night and drink massive amounts of water. And green smoothies. With things like spirulina in them.
It’s a far cry from that lost twenty-something.
When I think about it, I often wonder how I got to where I am now. I wonder how I didn’t lose my way completely and fulfill all the expectations of the little rich American girl. (I never thought I was rich. My parents would balk at that description. But as a nearly 42-year-old I can say quite plainly that I grew up really well and my life was very different from many many other lives from age zero to about eighteen. And my life today is very nice and we live very well. The difference? John + I earned this stuff. It makes it feel different somehow). How did I end up figuring it out when I felt completely lost most of the time …. Truth? I couldn’t tell you.
Anyway. Back to the infrared sauna blanket.
It’s a funny thing to just keep hoping that something will be *the* something. The discovery that makes the aches and stiffness of MS go away. The something that makes having MS less hard. I keep searching and trying and getting discouraged but trying again. Because if I stop trying then I’ve given up, right? And the MS will never go away. So I have to keep trying. I have to keep doing all sorts of odd things that other people swear are their saviors. I have to keep trying things like infrared sauna blankets.
Because otherwise, it’s over. And I don’t want it to be over. I don’t ever want to admit defeat to MS.
Anyway. I’m all over the place. I told you I was tired.
Xox, g
Day 340
I’ve been struggling lately with social media.
I know, I know. This is not a new theme. It’s tired and annoying and honestly, I really *want* to stop thinking about it. But here we are and it is what it is. I’m troubled and I can’t find peace.
A few days ago I posted (obviously) that I was stepping back from my Instagram indefinitely. Because Instagram is my kryptonite. I fall down a rabbit hole that leads to massive lost time, usually feeling bad about myself for missing some relevant cause or issue I should have acknowledged and angry for spending my time looking at other people’s (curated) lives instead of living my own.
Today, walking up the stairs I looked back at our Christmas tree, thought how beautiful it looked and immediately reached for my phone (which luckily I didn’t have on me). Because if I don’t take a photo and immediately post it with a pithy comment downplaying my joy and pleasure in deference to being clever and slightly ‘bored’ … then did that moment even happen? Does anything exist anymore without public documentation and commentary?
And social media etiquette… oof. Just absolutely exhausting and ever-changing. I have been wondering for a long time how much time I’ve watched drift away in pursuit of a perfect online persona.
Too much. That’s how much. And for what reward? Lots of views or likes? What does that even mean anymore when we can’t even stand in a line without pulling out our phones and scrolling? Sure, lots of people saw my cute picture of Lucy (with my implied eye roll and simultaneous heart eyes). But why … cuz they care about me or Lucy? Or because they can take a peak into my life without having actual contact or a relationship with me?
It sort of stresses me out.
Anyway. That’s me today. On Day #2 of no Instagram. For the second time this year.
xox, g
Day 314
Every time the seasons change I am convinced that my MS is going to kill me. That I did something to make everything so much worse and it’s the beginning of the end. All the work, all the effort to stay as healthy as possible has been for naught. I have failed and MS has taken control.
And then I remember that this happens every time the weather changes and to just give myself a break from the anxiety and panic and worry. Easier said that done. Isn’t that the truth about so many things?
It has been a long learned lesson that I still forget every few months. Right now I’m dragging, my eyes tired and my brain short-circuiting like wires doused in water. I’m praying that the temperature drops and stays low, because these forays back into the 70s kill me. Every. Single. Time.
It’s a hard assignment – learning how to best live. I don’t think it matters if you have an autoimmune disease or are just human. Figuring out how to live — really live — is exceptionally hard. There are pitfalls and doubts. There are difficult questions you don’t know the answers to. It feels scary and intimidating and never-ending.
And it comes back to a simple question — Who am I?
Not “Who was I” or “Who do people think I am?” or even “Who do I want to be?”
Just … Who am I?
I have a million answers and none. I breath in and breath out, my fingers hovering over the keys. Who am I ….
Tough question.
xoxo, g
Day 299
Lucy and I drove to the vet this morning in a drizzle rain, the colors of fall popping along the roadside, her nose resolutely out the window, even as she (and the Jeep) got wet. The sky looked ominous, dark, swirling, thick grey. It felt like the perfect, stormy fall morning. I loved every second of it and thought about how small the moment was in the grand scheme of my life.
Which brought me to the fleeting nature of existence, how small things make up all the big things — small triumphs, small beauties, small moments of happiness. It isn’t about the next big thing … it’s about all the little things that happen along the way to the next big thing. The nuances and rhythms of life. The blending of smoothies and guzzling of water, the unending laundry pile, the doctor appointments and the insurance payments. All of those things make up the big picture, like pointillism in art. Small together makes large.
John bought tickets this morning to see a re-release of “Rocky IV” in the theatre next month. We’d talked about it and he’d been of two minds; but I knew it was under his skin, something he wanted to do without a specific reason. Just a feeling. Nagging at him, circling back to him when he thought it had gone away. It isn’t playing at a convenient time or even on a convenient date … but we will go and it will be wonderful. Because life is about the small things — the small joys and shared moments. Walks with Lucy in the rain and a good run of songs on Pandora … the recognition that we all have a finite amount of time here on Earth, in these bodies, with these people.
xoxo, g
Day 294
I love chilly mornings. Waking up snuggled in bed, listening to the even breath of husby, the snurfling of Lucy Lou. Knowing there is time before anyone moves, before the day begins.
Recently they ‘trimmed’ the trees along the road below our house and now, it sounds like a Nascar racetrack most early mornings, when the sun is just beginning to lighten the sky — deep blues and purples turning to grays and violets.
The sun rises from the behind the hills that we see from our bedroom windows. A horizon of red and orange melting to pink and then corn yellow before opening up into a crisp blue-white morning. Birds are chirping and life is humming.
It’s been a strange October … it’s been a strange year. Nothing will ever be the ‘same’ again … we have irrevocably shifted course and we must acknowledge that and move forward within that … even if it feels as though no one is on the same page.
Maybe it’s always been that way. Maybe I’m only just seeing it now, as I come around the corner of ‘middle age’ … and begin to realize that nothing is as we were taught. None of the rules mean anything. No one knows what they are doing – no one. We are all just making it up as we go.
I feel suspended in time, not quite here and not quite there. Anticipating the future, mourning the past. But not quite present. I long to find the person I used to be but also, wonder if she even exists anymore. It’s been a long time since March 2020 when the whole world changed. It feels longer still since May 2020 when George Floyd died. I cannot unsee what I have seen … and yet nothing has changed. Isn’t that peculiar and also so indicative of our culture? Disappointing. Infuriating. Exhausting.
I move through the day doing what I ‘should’ do … according to … I don’t know. Me? The world? Social media?
I read once that we are not who we think we are. And we are not who other people think we are. We are who we think other people think we are.
So does that mean we are self-imposing uncomfortable and unnatural guidelines to our lives? How do we shake that overly layered and unnecessarily complicated filter?
I can tell you one thing – I do not know.
I know that I come here to speak to the void, but also to speak to anyone who stumbles upon this page and keeps reading. I am speaking to the other curious people out there, feeling lost and looking for answers.
I do not think answers will ever exist.
And getting comfortable with *that* is the hardest task of all.
xoxo, g
D5 Creation