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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
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 342
Yesterday was a Doctor Day.
So we shlepped into to Philadelphia, dealt with the obligatory parking issues and elevator issues and finally saw Dr. M to do the dance we’ve been doing for about eight years. How am I feeling, he asks without actually wanting to know. He scrolls the computer screen looking at my bloodwork, typing sporadically. We make small talk about the Grateful Dead. Talk about some intriguing research being done in the MS field that isn’t really relevant to my case currently. I tap my fingers, let him know if I can feel the cold metal, walk back and forth across the room on my toes and my heels, in a straight line. I hop on each foot. He disappears to “look at my scans” for a good twenty minutes. They are fine. We will see him in another three months to do it all again.
My prescription – as per usual – includes doing much of the same (eating well, water, sleep etc etc etc) and continuing to work on my anxiety levels.
Thanks.
So easy to say.
But it isn’t just anxiety about paying bills on time or Lucy’s medicine. Or picking up the dry cleaning (which I forgot again whomp whomp). It isn’t just anxiety about MRIs and walking in a straight line.
It’s low level anxiety about everything. Is it a sign … is it MS? Am I getting sicker? That’s the rub. Everything could mean worsening disease. Or it could mean nothing. And I don’t know. And honestly, my doctors don’t know. We’re all just guessing based on other people having this same diagnosis, this same combination of brain and spinal lesions and vitamin D levels, and glucose and all the other levels measured on a metabolic panel.
It’s anxiety about being sick but not wanting to be treated as sick. And sometimes needing grace without condescension about being sick. But not wanting that sickness, that moment of weakness to define me. Because I’m more than that. I’m more than lesions and fatigue and diet protocols and doctor appointments and numb feet and bladder issues.
Anxiety about the fact that once that side is seen, people cannot unsee it. It starts to define me and the anxiety of being limited and then limited again because I have multiple sclerosis. People making accommodations and acceptions and then … pity.
Anxiety about pity. Anger and anxiety and frustration and rage.
Because I’m here and I can’t fix it. I’m here and I can’t change it. I’m here and no one seems to be working on a way to get me out.
Anyway. That was yesterday.
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 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 293
When I finally decided to get up this morning, I did it in one motion. Blanket back, legs swung round, eyes bleary, body heavy, my torso suddenly vertical and painfully stiff.
I’ve been feeling heavy lately. Without a particular reason why. Maybe its Lucy’s tumor — now removed and tested and benign but the scab still healing and the cone still on. Maybe it’s our newest little dream that we’re slowly willing into reality — a dream I hesitate to talk about in absolutes or write about at all. Maybe it’s just being tired because life never does slow down — that moment of relaxation always just out of reach.
Today I went to physical therapy despite it being the last thing I wanted to do. I signed up for yoga and promptly cancelled my booking. I want to sit and feel the fall, feel the cool air slipping through the open windows, filling our home with a delightful chill that necessitates sweatshirts and fuzzy socks and blankets.
I want to take my dog for a walk in the autumn sunshine and come home to curl up and read a book. I want to breath and think and try to let go of the desperate stress that pervades every corner of my world.
I do not want to adult or even human today. I can’t bear small talk and niceties … discussing anything other than nothing.
I want to be alone. To be quiet. To write and read and be comfortable and comforted.
xoxo, g
Day 290
I recently became friends on social media with someone I haven’t seen or talked to in over ten years (if I’m being conservative). Re-connecting in the virtual age has sent me into a tailspin of memories, thought patterns and regrets that have been uncomfortable … unpleasant. And most importantly, unnecessary.
And it got me thinking. Were we meant to stay in touch with all the people throughout our lives? Were we meant to be reminded daily of who we used to be? Reminded of the person we grew from, the mistakes we made…. Were we meant to stay stuck in a circle, in a box of who we once were?
I don’t think so. I think social media has created a problem … not just with perfect lives and filtered photos, but with keeping us all stuck in one position, unable to move forward or change without the constant reminder of what once was.
In the end, I’ll probably end up un-friending this person because what does it serve to be connected, virtually, after years of growing into different people? How am I served by seeing this person’s life but not having conversations? Having this person see my life, without knowing the roads I walked to get here.
This is what I think about on five hour road trips through the changing colors of autumn.
xoxo, g
Day 136
It’s been a minute.
To me, the last time I blogged feels a lifetime ago. As though so much has changed that those days are nearly unrecognizable. But that’s life … that’s sort of how everything seems to be. Hard to remember, as though so much living has occurred between then and now.
A few days ago the mask mandate was lifted by way of the CDC releasing a statement about the efficacy (or lack thereof) for vaccinated people. It didn’t take much more than that for businesses to change policies, for gyms and studios and restaurants to re-open their doors, their tables.
Whatever my politics may be, it *does* feel like a relief. I don’t want the world to necessarily “return to normal” because what does that even mean in the wake of Covid-19, George Floyd and the civil reckoning that has become part of American culture? It shouldn’t be dismissed or forgotten. We’ve learned things- whether we like it or not. We’ve had to face things, whether it’s comfortable or not. And it isn’t over — it can’t be over. Even if there is a strong contingency of this country who would prefer to turn a blind eye. So no, I don’t want to “return to normal.”
But I would like to move through life without a mask, without the fear that every touch, every breath, could kill me. There is a relief in that, albeit small.
My second vaccine shot wiped me out – took the breath right out of my lungs. But it’s been over two weeks since then, so I am now vaccinated and able to move around again in the company of strangers.
I know that not all people with autoimmune diseases feel the way I feel. They are angry at the change, worried for their health. I understand that. But I can’t live my life by anyone else’s rules but my own. I have to feel comfortable in my own skin. I don’t like being in-authentic. So I feel how I feel. And I am glad to be able to practice yoga in a studio without a mask.
And that’s where I am today. On the eve of a beach trip and fully vaccinated. Looking forward to Black Widow and F9; The Fast Saga. Falling asleep with candles lit for my mother and my brother-in-law, husband doing research and Thor: Ragnarok playing in the background. Lucy snurfling in her bed, dreaming of squirrels and rabbits and sniffs in the long grass of spring.
Xox, g
D5 Creation