February, 2022
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08222
I was thinking today about how I used to believe that I only wrote well when I was sad. Not just a little sad; desperately, deep depression sad. As though the sadness somehow tapped into whatever potential existed within me.
Spending some time this year re-reading old blog posts, I’ve realized that my writing is good when it’s good … and sometimes my life is good at the same time. Depression and sadness aren’t my muse.
It’s funny when something we believe so strongly is suddenly disproved. John and I spent last night having one of our more intense conversations — difficult, sad, devastating. There were moments when I know I made him think about things in ways he’d never contemplated before. And it was uncomfortable for him.
I find that when I am caught in those moments – the really uncomfortable, I’d rather be anywhere else thinking about anything else moments – my initial reaction is denial. I try to find any way to maintain the status quo, to disprove the information that caused the discomfort in the first place.
Sometimes that lasts for hours. Or days. Or weeks. Sometimes it only lasts for moments. The more I practice it, the easier it becomes to let go of all my pre-conceived notions, all the things I’d believed for as long as I’d believed. But it doesn’t make it more fun. It doesn’t change the devastation that comes when our perfect glass houses come crashing down.
You can’t put the toothpaste back in the tube. No matter how hard you try. Some things just cannot be unknown.
Xoxo, g
07222
Today has been excruciating.
I think I hit what might be identified as my breaking point. I got to the point where nothing seemed worth it to keep up a charade that has been slowing eating away at my self-worth, self-esteem and happiness for years.
But reaching that point has also put a glaring light on something that John + I never discuss/deal with/acknowledge. It’s been our dirty little secret for most of our relationship. And having to face it has pushed our relationship into a pressure cooker. He feels attacked, trapped … whatever he’s feeling that I don’t know because he gets deadly quiet and doesn’t talk at all. And I’m feeling sad and alone. But also unable to apologize or make things ‘right’ like I have in the past because doing that is in direct contrast with taking care of my own mental health.
On the plus side, for the first time in the years that we’ve been doing this dance with his parents, he conceded that they do treat me the way I say they do. That he sees it and he doesn’t know what to do. Which sounds awful typing, but was actually a relief for me. Because until that moment, I was sure that he just thought they were justified in their behavior. And I turned a blind eye, because I love my husband deeply. It was like an unspoken agreement that we would just stay quiet about it all – but especially the really tough stuff. That our love would somehow get us through it every time.
I know that the pain he must be feeling right now is awful. Facing the infallibility of our parents isn’t easy. It sort of disassembles so much of what we as people grew up believing. And that can be devastating.
My heart is sore but I also know that I cannot stay stuck in this loop of denial and avoidance. Because inevitably it leads to me getting physically and mentally sick. And that just sucks.
Anyway. Today has not been the best day.
xox, g
06222
It’s one thing to talk the talk. It’s entirely different to walk the walk.
Today was an epic fail of me walking any type of decent human walk. I know I don’t usually get into specifics but we spent the day driving my in-laws to the hospital for my father-in-law to have surgery later this week. The hospital in question is NIH and the drive from their house is not short.
It’s a lot of time in an enclosed space with humans who just don’t share many of my thoughts or ideas about life. That’s a wide net to cast, but it needs to be because I have very little in common with my in-laws. Other than my husband. And I continually find it hard to believe that a man as good as my husband came from two people who just … aren’t that good.
Anyway. It’s very easy in theory to understand the dynamics between John and I and his parents. But in practice, in real life, all that rational thought goes out the window and I struggle to just be basically kind. It’s such a constant onslaught of uncomfortable conversations, judgement and condescension that I lose myself completely. Only after it’s all over and I’ve had a little time to decompress do I realize that I have once again failed.
And then I get to the point of fatigue with the repetitive interactions that I decide it’s all insanity on my part — repeating the same actions with the hope of a different outcome – that I don’t want to try anymore. Haven’t I learned?
But you don’t get that reprieve with family. Family never leaves, family never relents. It’s ongoing and stressful and unrewarding.
And that was today. And Wednesday. And then hopefully not again for a very, very long time.
Xox, g
05222
There are so many things no one tells you.
As though it’s a rite of passage to learn difficult lessons. As though we all should feel lost, afraid, angry and alone at multiple times in life for multiple reasons, and no one is compelled to help us out.
Like how life can feel happy and settled and you can feel blessed and lucky and so overwhelmingly content and then a wrecking ball blasts through your whole world, taking no prisoners, leaving havoc in its wake.
Like how you think you’ve worked out all the kinks, done all the growing and learning and accepting but then still be knocked over by a feather. A tiny, inconsequential moment that would otherwise be forgotten before it’s even acknowledged …. But this particular feather dismantles your carefully built life with a swirl.
I’m having a day and I’m feeling painfully alone.
And I know I will survive. I will move through this as I’ve moved through all the obstacles I’ve faced to this point. But I know it will hurt. And I know things will be irreparably changed. And that knowledge hurts almost as much as the obstacle.
Xox, g
04222
I did a series of social posts today because – as usual – I had trouble sleeping last night and I occupied my mind by planning my outfit.
Medicine Day clothing is tricky, because it has to be super functional in a number of key situations (vein access, rest room usage, etc). But I don’t like repeating outfits two months in a row, and I don’t like looking a hot mess.
Mostly because when you go to the hospital to get an infusion for an autoimmune disease, you’re treated like you’re a hot mess, have no brain and possibly can’t speak (among other, de-humanizing things). So I like to look sharp, so that I am taken seriously. It’s my hope, at least.
Anyway. Thought I’d share them here. Because A. My outfit was in fact, on point. And B. It’s good info for future use.
Final pic is my workout. The longer I’m on Tysabri (at the start of my eighth year currently) the more tired I get on infusion days. And working out actually helps clear my brain. But getting motivated to work out is a challenge. I managed to do it today. I hit 1k rides on the Peloton.
Not so bad.
Xoxo, g
03222
At dinner this evening I stated to husband that I was no longer going to make any New Years Eve resolutions. I’m not sure where it came from but it came tumbling out of my mouth confidently and assuredly. Somewhere, during the course of this day – this random, not totally inconsequential day— I finally knew.
I knew that I needed until February to understand what my goals for the year were. Too much happens in December — my birthday, lots of other birthdays (Jesus, for the believers!). The anniversary of the loss of my mother. Too many things to have any additional time to contemplate changes for the new year. If I wanted to do that in a timely fashion, I’d have to make the decisions in October or November. And I certainly couldn’t make those kinds of new year, new you decisions months in advance. Too much changes.
I decided – and then articulated – that I needed January to get my bearings for the new year. I needed January to decompress and get back into a rhythm. Get a feeling for where the next twelve months were leading me. I decided that January will serve as my ‘pause’ moving forward. January will be the moment when I catch my breath.
And so, as February dawns and we get into 2022 in earnest, I can more clearly see what I want to focus on, and what my goals are. Some things I try to do every year – read more, watch less TV (this resolution has taken years to make an impact, but I do actually read more and watch much less TV so I guess… worth it? 🤷🏻♀️). I usually hope I meditate more and practice the piano. Still working on consistency there.
But February brings with it clarity. It allows me to take stock of how far I’ve come, and how far I still have to go.
I’m not saying that husby and I are going to start Cross Fit tomorrow (or ever really; husby is deeply skeptical). And I’m not saying that my grand idea of a letter writing campaign will ever take flight. But I do want to lift more instead of only doing cardio. And I want to give my friendships the focus and attention and time they deserve. Life is short, and I want the people who matter to me to know they matter.
Anyway. Small goals. We’ll see how I’m feeling at the start of March.
Xox, g
02222
It’s funny – you can feel it when the bad energy is pumping even before you realize that’s what you’re feeling.
Today is Groundhog Day. Which is great … except that two years ago tomorrow, John’s brother died. And tonight, when my Dad came over for dinner, he shared that his dad, my grandfather, died on Groundhog Day.
Bubski died in 1979 – the same year I was born. We just missed each other. I used to think I could physically feel that sadness of missing him by just this much. The stories I heard about Bubski (his nickname) were legendary. I was sure that he would have loved me and spoiled me and been the best granddad ever. But we just missed each other. And that closeness – that near miss -haunted me as a child.
Now I wonder how much I’m like him – if his spirit is within me. I dearly hope I am like him -even if just a little bit – because he sounded wonderful and what a gift that would be. I’m less sad and just grateful that his memory lives on with such love and vibrancy.
Life is funny like that. How our perspectives change as we get older, as we gather more information. I’m sad I never knew my grandfather. I’m sad that I lost my mother when I was thirty-nine. I’m sad about all the tough hits I’ve taken — MS, my first marriage, blah blah blah. It all sucks. Life isn’t fair. And it certainly isn’t kind. But my choice is how to react to that, how to frame it and sit with it. How to hold the energy and then release it.
It can’t change the losses we’ve suffered. But perhaps it can help us carry them.
Xox, g
01222
Another month.
Time is crazy to me. Sometimes I’ll stop and wonder where I am, as though the wheel is spinning and I’m just skipping around, not having landed yet. It’s disorienting and I reach out, trying to find my roots.
LIke – how did we buy a second house only three months ago? Was it really only three months? I mean, it’s February 1st and we bought the house at the end of October … so that’s five calendar months, but only three full months since we did that thing. It’s insane to me.
And on Friday we head back to the city for medicine. It feels like forever since we were last there … but it was only four weeks. This will be my second infusion of 2022 … craziness. (Plus side, I’ve almost hit my insurance deductible and things will start costing zero dollars soon! Benefit of being a sick person, I guess? Hitting those thresholds early on).
When I am tired or I have a headache (regularly occurring things) time stops existing. Everything is paused. Tasks that would take five minutes get kicked down the road. Everything feels overwhelming. I’m grasping for time to steady myself and also wishing it to pass and finally reach the end of the searing pain.
I’ve gotten good at existing within the pain – at getting life things done. But by the end of the three days (that’s the typical length) I’m so exhausted from enduring the pain – from smiling – that it takes another couple days to recoup.
I’m tired of apologizing and explaining. I’m tired of feeling bad that I can’t just exist as a regular person. I’m tired of all the pressure and judgement I put on myself. Because even if it is other people, the only judgement I really feel is the judgement coming from within.
Fucked up, right? Yeah, it’s a side effect of having an invisible illness.
Xox, g
D5 Creation