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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
31122
As I’ve written about in the past, the new year always finds me searching to grow, to molt my old skin and start anew. Often it comes in the form of “self-help” books, philosophy, yoga … Anything that pushes me out of my comfort zone and forces me to expand my mind (& in turn, how I think about things).
Sometimes I could talk about this for hours, but this year feels different – like I’ve molted a layer deeper, and am learning to stop and contemplate before speaking. I’m currently reading “Quit Like a Woman” (among other titles, but this currently & primarily) and what I am loving and finding so fascinating is that it isn’t really about quitting at all. It’s about learning to heal, learning to find grounding and truth and love. (I’m only halfway through so I reserve the right to be wrong about this! But it’s my impression thus far).
It’s definitely educating, and I’ve learned a lot about alcohol, its place in our society, its marketing plus its place and eminence throughout history. But mostly, as the book turned its first corner, I began to learn to see in myself the strength and the curiosity I have needed and called upon to begin to heal myself.
**
Tonight, as we watched the first press conference with the NY Giants newly appointed head coach Brian Daboll, I heard in his words some of the things I’ve begun to learn about truth and humanity. Brian Daboll, as journalists ranging from professional and polite to downright snarky asked some truly leading questions, maintained his message. And his message was simple — it’s about relationships, a shared vision, communication and authenticity.
These are not revolutionary themes. They are timeless. I felt a kinship to Mr. Daboll and he earned a ton of my respect for his openness, his honestly and his commitment to his message.
I love these moments, when things in my life dovetail together – when for a moment I glimpse the bigger, connected, energetic picture.
Xox, g
30122
I’m at a loss for what to write about.
My brain is full but I’m still chewing on things, figuring out how I feel.
I got a text the other day with an article. It doesn’t matter what it was about, but there was no context provided. Just an article, out of nowhere, from a person I haven’t spoken to recently. But I understood by the headline that it was an article about a commonality between us.
I opened it and read the first paragraph or two. I responded with an emoji, because I agreed with the article. I was familiar with the subject, and I’d read many things about it over the past few years. I knew how I felt.
My friend’s response was that perhaps the article got it wrong. I sighed and realized I’d have to read the whole thing to properly respond.
So I did. And my feelings didn’t change. I knew how I felt about the situation. I’d both read articles and observed/gathered my own impressions. I felt how I felt, and while I was open to a discussion, I wasn’t ready to change my mind. This specific article did not add anything new to the conversation or give new information.
That was a moment when I knew exactly what to write and how I felt.
That is not the case today. I’m tired and my brain is full of so many things. Thoughts about how life is, how we put people in boxes and try desperately to keep them there. How we are not open to change, we are not willing to see other people as different than who they’d always been in our own minds.
Except when it suddenly becomes socially acceptable to allow that someone has ‘matured’ or ‘evolved.’
It’s a tough nut for me to be chewing on. It’s uncomfortable to acknowledge my own biases and even more difficult to contemplate that perhaps, I am wrong. Not always, but not seldom, either. If I am asking grace of others, if I am working and always learning and changing, I have to grant that others are doing the same. And that is very difficult in certain cases.
As an example: must I be open to my ex-husband being a better person than the one who treated me badly, ripped me apart and left me shattered? Isn’t it easier and more comforting to continue to believe that he’s awful? …. I mean, easier, yes, but fair? Not at all. And if I want to keep growing, I must admit that just as I’m constantly evolving, so is everyone else, including that man. Otherwise I haven’t evolved or grown at all. I have just judged. Possibly unfairly.
Oof.
Yuck.
Asking others for grace means giving it myself. And that’s the hardest part, isn’t it? Learning and understanding that everything is a two way street.
Xox, g
29jan22
As of today, I haven’t had an alcoholic drink in 775 days.
There’s a time in my life when I would find that absolutely insane. I worked in the restaurant industry, I was of Italian descent — wine was in my blood.
But the older I got, and the more disenchanted I became with how alcohol made me feel (honestly, this was a journey with John, so how it made us feel) the less I wanted to drink it. We’d do sober months, give up drinking for Lent … all kinds of things that allowed us to not drink, but also didn’t make anyone else feel uncomfortable about our non-drinking.
I don’t remember exactly what the final straw was, but we both gave up drinking one September. And then a few months later I broke and had a glass of wine while out at dinner with my Dad on a football weekend. I didn’t like that it seemed to make him uncomfortable that we weren’t drinking and I’m nothing if not a Daddy’s girl. Besides, I loved wine.
I had one glass and felt awful. Not mentally, but physically awful. After one glass. One harmless glass of wine.
It was about six weeks later that I once again hung up my drinking glasses (or whatever the appropriate object would be in this metaphor) for good. I stopped drinking full stop four days after my fortieth birthday.
It’s funny to walk through life as a non-drinker but not an alcoholic. It triggers people, leads to some awkward and uncomfortable conversations and forever changes relationships. I had girlfriends who made wild and hilarious proclamations about their drinking – to illustrate their superiority to me? To justify their clearly unhealthy relationship to alcohol? I don’t know.
My choice to be a non-drinker doesn’t have anything to do with anyone but myself. I feel better. My life is better. I also don’t judge anyone else. Everyone can and should make their own life choices, and we are taught young and it is reinforced often, that drinking responsibility is an integral part of life. Of adulting.
Right now I’m reading “Quit Like a Woman” by Holly Whitaker. It’s amazingly informative. So perhaps expect blog posts about not drinking until I finish. 😊
xox, g
28jan22
Today was the last weekday of John’s annual ‘half’ – and because his company does quotas and such in six month increments, it was the last day of crunch time to get deals in to hit sales goals. I’ve learned an enormous amount about corporate America and sales from listening to John talk about work. It’s all fascinating but I am also glad to not be in the rat race anymore.
On the plus side, John hit the goals he wanted to hit yesterday, so today was just icing on the cake. He’s had a really good run since about late May, and we’ve been very lucky. I’ve been supremely lucky because for the first time since I stopped working, I haven’t felt any pressure or need to go back and earn a paycheck. That’s a huge stress relief for a woman with an autoimmune disease that’s triggered by inflammation brought on by stress.
It also began snowing this morning and has continued throughout the day into the evening. It’s beautiful, soft falling snow. Keeping life quiet, but not panicked by massive accumulation. Even the grocery store wasn’t a hot mess when I stopped to get Starbucks this morning.
Today felt calm and cozy. We raised the thermostat two degrees because things just weren’t warming up (even with some space heaters) and now the house feels so warm it makes me constantly want to fall asleep. Haha!
Life feels strangely okay – not the okay you say through a strained smile, but the actual okay of feeling secure and at ease. I don’t trust it – I’ve had too many body swerve moments to feel safe. But just to have this moment – it is a gift.
Xox, g
27jan22
I drove to a breakfast with some lady friends this morning and the beauty of the sun shining through frosted tree branches took my breath away. It made me stop and consider how much beauty exists in the small moments of life.
I guess beauty shows up in different ways to different people. To me, it was the pale corn yellow of a winter sun and the sparkling of ice, it was the warmth of my steering wheel and the sound of the music playing in my car, snaking its way into my heart and the tap tap tap of my fingers. It was the hug of greeting from my friends, the conversations we shared. It was the first sip of my chai and the comfort of my couch and blankets when I arrived home, the fatigue pulsing so deeply it was in my bones.
Beauty was the nudging of Lucy’s nose, her head rubbing softly on my legs to make sure I was okay, to tell me she loved me. It was dancing candles in the early darkness of a winter night, shared popcorn and a movie with my love, cake pops and frizzy water and end of night walks around the curved neighborhood sidewalks.
Beauty was everywhere for me today. It emanated from my life, from the love of my friends and the love of my family and the deep, indescribable love of my husband and my puppy. Beauty triumphed today in the winter sunshine.
Xox, g
26jan22
Two years ago on February 3rd, John’s older brother Alan died.
It was sudden and awful and my memories of that time are a blur — aided mostly by my overly sparse Instagram posts. His death was followed far too closely by Covid and the pandemic and quarantine so sometimes, it feels like a lifetime away.
Today would be his forty second birthday. (Yes, that makes him younger than me). I don’t want to diminish that we lost him far too soon, but when I think about Alan now, I mostly feel joy. I feel him with us a lot and I believe that he’s watching over John with a mindful eye.
The thing about Alan was that he had cerebral palsy. And he was non-verbal. And we didn’t see him a lot – something I could kick myself for now, but I also can’t go back and change. I loved seeing him when we did – it was so patently obvious how much he loved his brother. His eyes filled with love and then utter sadness when we inevitably left. We would stand and talk to him – tell him stories about our lives, tease him about childhood memories. He would withhold kisses from John until he felt John had properly paid penance for not being around.
Alan’s kisses were life. His joy was infectious – his laughter, his smile, his waving arms. I know – if he could – he’d have given us an earful. He’d tease and tell embarrassing stories. He’d harass his little brother.
But that was never their relationship.
So I believe that now – he is doing his brotherly duty. He is giving John strength when he doesn’t believe he has any. He is reassuring him when life feels uncertain and overwhelming. He is lifting him up when he can and walking beside him when that’s what John needs. I feel Alan with us. During the day when something funny happens, and at night when I light candles for he and my mother. He makes me feel safe.
I miss him but I also know he is with us.
Happy Birthday, my brother. I love you.
Xox, g
D5 Creation