attachment
Last summer I was driving home from a hair appointment, listening to a podcast. It was a truly beautiful day and a beautiful ride, as I used to drive all the way to my old hometown for my hair and the roads between here and there are fairly beautiful ~ winding through green, lush countryside.
The podcast was Goop (obviously). I am a big fan of Elise Loehnan’s guests and the conversations and she was speaking with a Swami … something-or-other. I apologize for my ignorance but I can’t seem to find the information anywhere. What I know is that what he said has stayed with me since, drifting in and out of my conscious mind. Lingering in the shadows of my emotions, my reactions, my life choices. Quarantine and COVID were incredibly challenging (and continue to be so) and something that this wise man said in his conversation with Elise (I believe at one of the In Goop Health summits) has grounded me when I’ve felt like I was on the edge of a cliff.
It was about the idea of attachment. And that our human unhappiness and dissatisfaction is always linked back to attachment. Attachment to things, yes, but also to ideas, philosophies, traditions, the ‘way things have always been.’
It hurts and is uncomfortable to grow. To expand. As humans we cling to familiarity, but also with known quantities. We describe most things in terms of other things … such as, my MS is like feeling really really tired, times ten million, all the time. I am using the notion of fatigue as the basis for my description. Assuming that everyone has a rudimentary understanding of being tired. But what if that was taken away from me? How would I describe it then?
In this year of global reckoning and (hopefully) growth, I believe humanity has routinely found itself uncomfortable. Clinging to the known quantities. Unwilling to expand and try a new perspective, or a new level of understanding because too much was changing, there were too many moving parts. We (the collective we) chose to cling to ideas of safety, of ‘the good ole days’ because that nostalgia gave us peace, comfort. Instead of acknowledging that our comfort in those times perpetuated other’s discomfort. Yes, that acknowledgement hurts. And it’s hard.
We are attached to ideas. We are attached to memories, or things that we have put our faith in, built our personality on; the building blocks of who we believe we are.
I am attached to the idea of equality. But does my definition of equality include everyone? If I do a self-examination of (white) women’s quest for female empowerment, am I willing to concede that it did so on the backs of BIPOC and didn’t fight for the equality of all women, but merely white women?
I am attached to a notion of family, but does my family reflect that? Have I based my ideas on reality and am I holding people to standards that are unfair? Am I judging others on qualities that only exist in my own idea of family, rather than the reality of what my family actually is? Flawed, human, different than me …. How can I hold others accountable for unspoken expectations? For wishes and dreams? How can I be angry or disappointed if they don’t live up to what I’ve built in my mind? … I can’t.
My mother used to say “It’s all just stuff.” It’s simple and direct and can be interpreted a million ways. But I think of it like this ~ what we choose to carry with us, to define ourselves, to create our foundation … it’s all just stuff. The ideas, the belief system, the popasahn chair. It’s stuff. And we can be as attached as we want to be. We can cling to things, we can be immoveable. Or we can be fluid, we can be open to change. I vacillate between the extremes, trying to force myself to be as open-minded and thoughtful as possible.
I don’t always succeed. But I’ll keep on trying.
xox, g
wakanda forever
I woke up early Saturday morning. Lucy had had surgery the day before and we’d all curled up and fallen asleep at our usual time (aka, early). I picked up my phone and scrolled Instagram (as I do). At first I was confused … why were there so many Black Panther posts?
And then it all began to make sense. I scrolled faster, I searched. I read bits and pieces, achingly sad snippets from person after person. I finally read the post on Chadwick Boseman’s page. I can’t explain how it made me feel.
At first, I hoped that maybe, it wasn’t true. Maybe I wasn’t understanding it properly. How had I not known he was sick? Maybe we’d all just collectively learned about his cancer. He couldn’t possibly be … dead.
And then, after reading the truth, my whole body began to shake, tears streaming down my face, my breathing shallow and uneven. This man, this king, this enigma had died of colon cancer. And he was barely older than me.
Colon cancer. The beast that took my mother, my grandfather. It terrified me.
Looking back at recent photos of Chadwick, I could see the cancer in his face — that tired, drawn look of someone smiling through pain. The look that haunted my mother’s face for more time than we all acknowledged. The grayness, the dull skin, the too-large eyes against hollowing cheeks, a stark jawline.
He hid it well. Some sick people really do. He focused on the things that mattered to him, the things he wanted to accomplish, and promote. He believed he would beat cancer. He didn’t distract the world with his illness and take away from the spendor of what he did, what he accomplished as an actor and an artist. He let his work speak, his thoughtful responses to questions. His actions, both public and private.
And we all mourn him, and marvel at what he was able to do, while battling silently.
My heart breaks over and over again. Every day, every time I think through the choices he made in the face of devastating odds. He was so much more than an actor. He was the embodiment of a king, a legend. A soul meant to teach us and guide us. A soul taken far too soon.
I think about my own health battles ~ the war I wage every day against an unbeatable foe. And I find inspiration in his example; in his relentless pursuit of his dreams.
Wakanda Forever.
xox, g
and now
This morning, as I watered my meager garden, the breeze rustled the leaves and it was cool. Refreshing.
Yesterday was brutal. And my (occasionally reliable) weather app tells me there is more of that to come tomorrow. Today is the respite.
This year has been … intense. It’s hard to wrap my brain around the fact that I began it in Tokyo with my brother, my cousins, my husband. Waking up on a mattress on the floor, shivering in the cold. Now, I’ve been home — uninterrupted — for nearly eight months. I have grown a garden, I have made pasta and bread. I began working for the first time in over three years. Husband and I survived unemployment, battles with health insurance, tricky diseases and family. We lost his brother. We gained knowledge and understanding of our world and our country that we had never known before. We have been uncomfortable, unsure. Angry. Sad. Disappointed. Afraid.
I’ve spent time this year contemplating the idea of perspective and truth. How we each come to where we currently are — what we currently believe. How people I love, have loved, can say and believe the things they do. How I reconcile that within myself. How I’ve often – of late- been willing to walk away.
My experiences, my education — my life thus far has shaped how I feel I fit into the world. There are things I cannot change. There are things I can and I must. I must be willing to be supremely uncomfortable, and I must be wise enough to be quiet. Those things are difficult. Sometimes, nearly impossible. I was raised to have and to use my voice. Deferring to others is a challenge. But sometimes — and this is so important — it is the right thing to do.
I have been forever changed this year. Like all years. Just more starkly, more abruptly. There is nothing subtle about 2020. There is no “going back.” And for anyone who longs for that, who wishes to return to a “simpler” time — a time before COVID-19, a time before the most recent civil rights movement — you are part of what holds us all back.
We cannot go back. Not to a time when women had no rights, no voice. Not to a time before COVID changed our very existence: how we live, how we travel, how we function in the world. Not to a time when white dominated and erased and marginalized all other colors. Time does not go back. To strive to rewind diminishes all that people have worked for toward equality, toward humanity, toward making America’s ideals a reality for all Americans.
I listen to news reports of the RNC and I wonder how people believe him, how my fellow Americans support his lies, his manipulation, his slow movement toward dictatorship and erasure of all humans who do not agree with him. I can’t make sense of it other than these people, their lives and their education and their values somehow align with him. And while I cannot understand it, I must acknowledge that we are not all equal, and we do not all believe and put value into the same things. And while that feels very frightening right now, it is also what makes this America.
letting go
Last week was a tough week.
It began with my phone completely failing and then the replacement phone that Apple sent me (so kindly ~ the full cost equalling a pending charge on my credit card) *also* not working.
Then we moved into a hurricane. No big thing. Just eight hours (give or take) without power and many, many road closures and floods.
Following that brilliant beginning, I was lucky enough to enjoy my very first colonoscopy (preceded, obviously, by the truly wonderful prep I had heard so much about).
We had some fun challenges along the way (my mammogram, meant to happen on Monday, being rescheduled for the second time because, really, no one stresses about lumps in their breasts, amiright?!? Then nearly being late for the colonoscopy and endoscopy because a major road was closed and no phone lines were working at 6:30am; I mean, I’d sign up for another round of prep, wouldn’t you?). In the end the mammogram happened (albeit this week), we got power back and I survived the most evil night of gatorade drinking known to man. Barely. (But barely counts). Additionally, after about eight hours on the phone with Apple and Verizon it was discovered that we were sent an AT&T phone … so, while painful and time-consuming in ways that cannot adequately be articulated, in the end my phone was fixed as well. Woof.
I often have moments of such utter and extreme fatigue that the only logical way to cope is to cry. Everything hurts; my head, my body, my eyes. Everything. Last week brought me to my knees so many times, I lost count. And it was just life — not MS. Which, y’know, likes to jump on bandwagons and make things better. (Ha). On Thursday morning I was so delirious from lack of sleep my whole body was shaking uncontrollably. I just could not get warm. It took me until Sunday night to start to feel like a human being again. Even after meds on Friday morning.
It’s very easy to give into the frustration, the anger. Trust me, I had some moments. (Like when Verizon’s chat just stopped responding …). I tried to remind myself that being angry wasn’t actually helping a single situation. I could be mad about drinking spiked gatorade on an emply stomach, nearly vomitting many times and being unable to sleep or lie down for more than 20 minutes at a time. But in the end, I had to do it. I knew that it was the smart decision (my family history of colon cancer = not good. At all). I also knew that no amount of anger would change the phone situation. I just had to keep working the problem until a solution was found. And eventually … it was. Power outtages and extreme weather are always jolting (especially if you have a high strung dog who freaks out ABOUT EVERYTHING).
It’s an exercise to let go. It’s a practice. It’s something I just keep trying, over and over and over again. Sometimes I succeed. Sometimes I fail. Sometimes I just thank God I’m somehow still alive despite everything.
The bad weeks will keep coming. The good weeks will keep coming. If I’m lucky and if I give a little effort, I’ll be able to take a deep breath and step back and recognize everything for what it is. But it will never get to be easy. I think it will always be a conscious effort to take the emotion out and understand what I’m wading through. Cuz when it feels like shit, and it smells like shit, it’s hard to think it isn’t, in fact, shit.
xox, g
effort
Life has been challenging.
Not just for me, but for the world. It has been difficult for people (especially, it seems, Americans) to get past partisan lines and understand that this disease doesn’t care who you voted for, will vote for or what you believe your rights are.
But … life has also been challenging for me. It happens, right? You think you’ve got it figured out, you’ve found yourself in a groove, and then suddenly, nothing makes sense, nothing works anymore.
I’m tired. I’m always tired, so when I write it, there’s no strength to it. No power. But I keep saying it and I keep typing it because it is the world in which I exist — where every choice is about energy, about focus, about consequence. If I ride the bike early and take a shower, I have a whole day ahead of me in clean clothing with nothing hanging over me … but I’m wiped. I move like I’m drifting across the ocean floor in water … everything is slow and fuzzy. Time-delayed. r Most things make sense but I have to work to get there. I am tired. If I work, run errands, do chores etc in the morning and put off the bike until the afternoon, then after my shower I just have to sit down, eat dinner and veg. But it means I’m in work out clothing all day. There’s always something I have to do hanging over me, I’m always checking the clock. And these are the days that my body hasn’t decided to throw a wrench in things and switch up ‘the norm.’
The last few days have been a struggle for me. I mean … just a struggle. I am a type A person and I like results; I like actionable items. I like steps that lead to solving a problem. I have built my MS life around this idea that every problem has solutions. It’s just about working through the list and seeing what fits on that particular day. It is very … very frustrating when the list doesn’t work. When google has no alternatives. When you are just stuck in a body that has resolutely refused to work. Sometimes I’m angry, sometimes I’m defeated … oftentimes I want to cry with despair and frustration.
And sleep. Sleep is always good.
xox, g
easier
It’s funny. I left my big, full-time, exhausting, never-stopping, intense job in January 2017. I left because it was too much, I was exhausted, my whole life was just existing to do that job … and the company was changing and I just … I couldn’t anymore.
And I didn’t look for another job. I watched ten seasons of Grey’s Anatomy curled up on my bed during the dead of winter while John went to work. I languished in the freedom to sleep and drink and not do anything. The novelty was high. I loved sleeping until the sun was up. Eating oatmeal and raspberries at a leisurely pace. Shuffling around the house aimlessly (y’know, after the initial rush to get all those outstanding things I hadn’t managed to do while working done).
And then, all of a sudden, I felt lost. Adrift. Unsure of who I was without work. Intermittantly angry and bereft and at peace. I rode my bike. I read a few books. I began to obsessively check LinkedIn. I wondered if my worth as a human was inextricably linked to my professional success. Had I unwittingly thrown my life away when I’d left my job? Surely not.
Fast forward to early 2020. I’d given up looking for a job. I was either over-qualified or under-qualified or just … not the right fit. I wanted too much money, I couldn’t work enough hours …. The list goes on. I’d resigned myself to the fact that I would no longer earn a paycheck (or a disablity check). I was solely reliant on my husband for support.
That sucks, BTW.
The thing is, and I own it, I like money. I like earning it, I like having it, and I like spending it. (I also like saving it because … see earlier in sentence … I like having it). I’m not ashamed of this. I think most people – if pressed – would say that yes, they also like money. Maybe it affords them a comfortable life, a less stressful life, an adventurous life. Whatever the reason, money does help ease some of life’s more uncomfortable predicaments. (Not health. Trust me, I know that. But it also doesn’t usually hurt when faced with issues).
Anyway. Having given up the dream of ever truly working again, I somehow stumbled upon a job. And as the world crashed in March and April, and many people lost their employment (including my husband) I actually *had* a job. Insanity. Joy. Deep, unbridled satisfaction.
Doing my job isn’t always easy. All the things that made working hard back at the old place of employment still apply today. I’m tired. Especially in the afternoon. Stress triggers my disease. Work can be … hard.
But I really love it. I love working and solving puzzles and getting frustrated and learning new things and being humbled and trying again. I love all of it. And in the end, it isn’t even about the money. (Although, what can I say, it’s a great perk!). It’s about self-worth and making my brain work and continuing to learn and evolve.
And I’m very, very glad it isn’t any easier than it is. That would take away all the fun.
xox, g
and the hits just kept on coming
We did not camp this past weekend.
We had every intention of camping. We had our entire truck packed within an inch of its life filled to the brim with camping equipment and coolers and food and bedding and … everything.
And it all stayed safely packed for over 48 hours while we spent an enormous amount of time driving in a tropical storm and hanging out in a hotel room.
That’s life, right? That’s just how it goes sometimes.
For us and camping, it happens more often than not and John, in utter frustration, vowed to never commit to tent camping in Mansfield ever again. (I don’t think that will be the case … I think we will tent camp again. But probably not for a long, long time).
Friday was a test in patience that we both, at various moments, failed. Why drive four hours (theoretically — in good weather with no accidents or traffic) to a campsite you know you aren’t going to use? Because … family.
Why spend five times as much money to book a hotel (with a broken hot tub and swarming with children for some unknown reason)? Because … family.
So on Friday, as we spent the entire day driving and back-tracking and changing directions and being exhausted physically and mentally with the unending rain, we both intermittently lost our patience.
Luckily, not our senses of humor. At some points during the ride I laughed so hard I couldn’t breath. I wiped tears of mirth from the corners of my eyes. But at 8.45p, after arriving and unpacking only to have to repack everything and move rooms due to a broken bathroom door — I definitely wasn’t laughing. I was just so … achingly … tired.
We push through. That’s what we do as humans. We assign an end goal — we will get to HERE by THIS TIME and we will accomplish THIS along the way. It’s all arbitrary and then, it isn’t because social norms and standards of society dictate that we do the things to get to the places to satiate … the thing.
Anyway. I said to check back and I couldn’t leave any possible reader hanging in the balance, not knowing how our doomed camping trip turned out. It didn’t. And that’s just how life happens sometimes.
xox, g
downpour
Hubs and I have planned (and cancelled) many a camping trip. So this weekend, we decided, come hell or high water, we would camp.
It has come to hell and more specifically, high water. But we are loaded up and ready to go. My body is afraid. Very afraid. But I hope that in the end, it is a fun experience that we tell stories and laugh about for years to come.
We shall see. Check back on Monday for an update.
xox, g
spinning
I tip into walls.
Not sometimes. A lot. I think I’m walking like an upright human and then, suddenly, the world exists on a steep angle.
I’ve gotten pretty good at handling it. I watch where I walk, I scan the floors and look out for things I can grab for balance. It becomes second nature when you have something as unreliable and fluctuating as MS.
Having an invisible illness is a tricky thing. People make assumptions about you — or rather, you think people make assumptions about you. This is probably because you have so little control of what your body does on a regular basis and you have such heightened awareness, you are completely sure that all eyes on you are questioning your sanity. Usually, they are not.
We all have a very high sense of self-importance. We think what we are doing, what we are reading, what we are interested in is also the most interesting thing to other people. This is what makes Instagram (or any social media outlet, for that matter) so appealing. We can post about our lives as though every other person is waiting with baited breath to ‘read all about it.’
I’m painfully self-conscious about my MS. About tipping into walls. About walking like a drunk person. About losing track of a conversation mid-sentence. About choking on my own spit. About peeing my pants. I feel like I walk through life with neon signs alerting everyone around me to my myriad of flaws. It takes a second to remind myself that other people have more interest (by far) in themselves than they have in any other person. Sort of like myself. I’m so caught up in keeping all the balls in the air that I don’t have time to notice what other people are doing/not doing/messing up. Plus, I have a lot more patience for most other people than I have for myself.
Today my world is spinning. Not figuratively. Literally. It’s the first time this has ever happened, so I’m finding it very frustrating and unbalancing. I don’t like not having a list of things to try/do to solve a problem. (You know the list. LIke, for a headache you take aspirin, you use ice, you rub magnesium lotion on your neck, you put Vicks vapor rub behind your ears … you get the gist).
I am hydrated. I have eaten food (protein and complex carbs). I have rested. So far … nada. I have sent a message to my GP through my medical portal (and have been alerted that since it is a non-emergency, I can expect to hear back within 2 business days. If I am still dizzy in two business days, I won’t be waiting for a response from the portal, I can promise you that).
There’s a line in one of my favorite movies, A Few Good Men, when Tom Cruise says “And the hits just keep on coming.”
I think maybe, that is the theme of my life.
xox, g
spoons
When I was younger I heard an interview with Celine Dion. She was describing what she wore to her wedding — the weight of the crown and the pain of the shoes. She laughed and said, almost dismissively, “When you start worrying about comfort you have become old.”
I gotta tell you, that left a lasting impression on me. I spent many a day, many an evening, being uncomfortable in my clothing, reminding myself that I didn’t want to be old.
The flaws in this thought process are RAMPANT. Now, at the ripe old age of forty, I can promise you that my number one priority is being comfortable and that if that makes me old, so f*cking be it. Then I’m old. I refuse to suffer needlessly in uncomfortable shoes, pants or anything else. It’s a true waste of time. Why be uncomfortable ON PURPOSE?!?
**
I learned, at some point in life, that advice from Celine Dion would not steer me in the correct direction. Celine Dion’s priorities did not accurately (or ever) reflect my own. In fact, the only person I should have been listening to, all those years ago and every day since, is me. There is confidence in comfort, self-assuredness in feeling okay in your own skin. Always trying to be something else, wearing something outside of that … it sets a person up for failure.
I bought three tank tops today. I didn’t need to. I probably shouldn’t have bought them. But they are tanks with built-in bras by my favorite bra company IN THE WHOLE UNIVERSE … and they sell out so fast I knew I had to seize the moment.
Listen, over seven years ago I began learning very difficult life lessons. Not because I wanted to or because I had found some sort of enlightenment. Nope. It was because I’d been diagnosed with an autoimmune disease that has slowly and systematically eaten away at my body. I only have so much energy; so much patience for all the minutae of life that is exhausting.
I work hard to be as healthy as I can be, but that work wears me out. By the time I’ve showered and need to get dressed I don’t want to spend even an ouce of unnecessary energy trying to figure out what to wear (and I most certainly don’t want it to be uncomfortable). I buy things I like in a couple colors and rotate through them. I save mental energy and physical energy. Because … spoons.
Have you heard the spoon theory? It’s a good one. It’s the idea that those of us afflicted with some sort of illness or disability (be it visible or invisible) have a finite amount of energy in each day. Let’s say, twelve spoons. We have to decide how to use those spoons (shower, cook, work, drive, laundry, yoga, mopping floors, etc etc etc ad infinitum). I started wearing my hair curly about two years ago because I just couldn’t keep spending so many spoons straightening it. Not because I like curly hair or I was ahead of the curve with the new natural hair trend. Nope. Because I was tired. Like I am ALL. THE. TIME. If I use too many spoons in a day — like, I work and clean the house and cook dinner and shower (showering = a lot of spoons) and take Lucy on a walk or two … and all of sudden I crash … well, I just used tomorrow’s spoons. So when tomorrow rolls around, I’ll be a wet dishrag for half the day because I just don’t have enough energy to get through.
And not just a wet dishrag physically. Also, and even more rewarding, a wet dishrag mentally. Which (obviously) can wreak havoc on a working person.
So. Spoons.
All I could think about today was how I have designed my wardrobe to look put together without requiring much thought or effort at all. I like rompers and dresses and overalls and jumpsuits (one thing = the whole outfit = not much thought needed). I like athleisure because I work out and I like to also look nice, and leggings and a sports bra don’t take much thought. Plus –> comfy!!
I like being comfortable. My body so often is *not* (because, well, MS). And I thought about Celine Dion and how I wished so very hard I hadn’t listened to her all those years ago. But young minds are impressionable ones, and young minds seeking approval and a place in this world soak up all the bad advice about how to do it. If I could change who I was back then I wouldn’t become who I am now, so I guess there’s comfort in that.
xox, g
D5 Creation