Tag: Life

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Chronic Disease Emotional Work

Day 550 and Boundaries

I don’t maintain boundaries well. I am embarrassed by my needs. Ashamed even. I’m afraid if I maintain the boundaries I actually need I’ll doom myself to a life of loneliness. No one is going to go out of their way to hang out with someone who can’t do fun shit right?

And so I let my own needs slip. I agree to do things. I tell people sure I’ll meet up. I’ll agree to go to a meal together. I pretend to be excited about going somewhere. I yield to the expectations of a normal life. And then I hold myself together as long as I can. I’ll get some enjoyment out of my time with loved once. But after a few days if I don’t get rest and recovery I will be in a rough spot.

It always ends in a crash. When I know I could simply draw firmer boundaries and take time before it becomes a crisis. My loved ones are confused by how I continue this cycle. Why didn’t you say something? Why did I agree. And I honestly don’t know sometimes. Because I’d never agree to do anything ever if I had my way.

And I’ll admit I’m afraid that if I never do anything eventually I’ll be forgotten. That no one will go out of their way to be with me. I can tell myself that this isn’t logical. That this is just the scared inner child who experienced being left alone when she was small. That reality doesn’t reflect reality any more. But I’m not so sure. Maybe my nearest and dearest will still come out for me. But I do think we live in a harsh world where we mostly don’t care if others disappear into their homes forever.

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Travel

Day 549 and Rekt Travel

One more institutional bit of trust has frayed and snapped for me. I don’t trust travel any longer. Maybe I trust the big airlines and well traveled routes but off the beaten path travel isn’t for me any longer.

Someone didn’t fully understand my limits and I found myself struggling in a situation well beyond my physical means. The trust was so broken I don’t know how to even begin putting back the pieces from it. I’m exhausted yes, but the worst part is the fear I feel from being put in a bad situation and seeing just how incapable I was of fixing it myself. I’m not independent anymore. And I’m scared and angry about it.

I envy people who can have a situation change and have it’s impacts be immaterial on their day. Oh it’s inconvenient if the travel estimates were three times longer than planned. Oh it’s annoying that there is no air conditioning. Oh it’s frustrating that all these minor details are annoyances for you and intense health risks for me.

I fear I’ll come out of this experience paranoid and much much sadder. I feel stupid I couldn’t protect myself. I feel gullible that I let someone else handle the details. People tease me that I prepare for travel so aggressively. That it’s eccentric and odd and a sign of being a crazy woman.

But when the consequences are so expensive; a thousand dollars gone in a hotel scam, a fortune in gas, an extra thousand to weekend hour doctors to stabilize. I think it’s sensible to be extremely prepared. Nothing black pills you faster than being sick. I tried to act like I could be a normal person and just got rekt.

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Aesthetics Travel

Day 548 and Shame

I’ve got a pit in my stomach. My throat has the constricted feeling of embarrassment that gets trapped in your gullet. I failed and lost money on something stupid. I tried to do a pleasant vacation sort of choice over a long weekend. A “nearby” Riviera town was supposedly within driving distance. I thought what could go wrong. Let’s go to the Ionian Sea! I briefly thought I could enjoy something like a regular person.

I said yes as everyone was so excited by the fresh air and the beaches. It will be healthy and fun! I was worried it would be without the basics I need to keep standing upright but I wanted to try anyway. Consistent air conditioning is really important to keeping the rest of my bodily system’s functioning. It’s a very Marie Antoinette need, but once my spine swells it can go very wrong very fast. Summers are hard for me.

My system begins to cascade within a pretty short window. About half a day. Eight hours without being able to lay flat for a break ended up fucking me up badly in this case. The “oh it’s close, just a three hour drive” ended up being a ten hour ordeal over badly maintained roads. I was sick to my stomach and in pain as we took hairpin turns and popped over potholes. I was in so much pain it was over a 10. It was “lose consciousness” levels of pain as my body knew I shouldn’t be awake for it. I was afraid it would get so bad I’d need a hospital. Instead I settled for opioids. Keeping out of the hospital was probably wise.

I hate needing those kind of drugs. The “your pain is a 10” drugs push me off the plane of reality by a few ecliptic degrees, and suddenly I can tolerate the pain and discomfort again. I understand how addicts get made now. It’s not real comfort. It’s synthetic but most people can’t tell just by watching. The fake relief looks real.

I’ve never felt tempted to take pain medicine recreationally. It’s usually only when a pain is too big for my reality that I tap out in defeat and take an opioid. It’s when reality crushes my soul as one variable starts to degrade the whole machine. I only use it to stave off collapse. And I was very close to collapse.

What is fucked up is that people like me off the axis of reality. The hazy hyper vibe’d unreal “reality” of encroaching nihilism is bop. Dystopia seems cool and consumable.

But it’s not an adventure for me. Living when sick is a daily dance with the devil who could use any chance encounter to end it all for you. The kind thing might be to stop fighting. But I rarely give up so I must enjoy the sticky Sisyphean crawl towards towards reality and the search for my own dignity.

I’m ashamed because I couldn’t make good decisions in that kind of pain. When the first hotel turned out to be a scam I happily laid down a card to stay till Monday at another hotel. Anything to get me relief. I just needed a safe cold place to heal.

It was a bad decision. The air conditioner didn’t work. I couldn’t get comfortable. I was sleeping in a dark sort of cold room as I couldn’t work up energy to go to the beach or even see the rest of the hotel. Not that it mattered as none of it was air conditioned anyway. I decided to go home after I had built up energy reserves back from sleeping for hours. I couldn’t tell you how long I passed out for but it might have been close to a whole day.

Alas I was again scammed for my efforts. The hotel clerk says no you paid for four days so you cannot get a refund even if you leave early. No refunds ever. No early checkout. No one cares if you are sick. Fuck her but I said hotel California for me. I was sick and needed safety.

I made some efforts to get receipts and documentation. I asked a receipt attesting that they wouldn’t let you cancel for any circumstance and that I was sick but it made no difference. Maybe I can take to the credit card or even the health insurance to show that I crashed. I’ll work it out on the backend.

I often wonder why I need special care. Surely I can try to do regular things like drive to the beach. But I couldn’t. I lost 48 hours to driving and bad air conditioning and pain. I didn’t have the health to stay at the beach. I needed to go back to the city with air conditioning.

I felt so stupid. I tried to fight to hold space that maybe I was a person that could do a vacation. That I was normal. And it was firmly corrected by reality. And then you think this is why I don’t go on vacation. The additional friction makes it a hell. It’s not a joy it’s a visit to hell.

I cut bait quickly this time.I’m ashamed at now much I must firmly maintain the no. No I don’t want to go to the beach. No I don’t have the energy got a full day road-trip. And definitely no on an empty stomach.

I feel like I’m not fun. That being friends with me is joyless because I can’t agree to fun things like a weekend at a beach. I find myself in tears having failed again at trying to do a nice normal fun thing. I ruined the weekend for myself and everyone around me.

Fun with me is being in a dark room. We watch television. Or maybe a movie. We make fun of a plot hole or bad casting. We sleep a lot. If we are at my home we do the chores. We keep up with the farm. There is no reason to turn consumption of recreation into a thing. It just hurts me. No cheap facsimile of an American vacation in a resort in a cheaper country.

That hideous example of colonial expectations of western domestic standards turn out to be required for a disabled woman. Air conditioning and short trips keep me alive. And at quite a cost. Since no one will refund me any of these damned scam hotels. I should have known better. It will probably take me a week or so to recover. And I’m so ashamed.

Categories
Aesthetics Travel

Day 547 and Cruel Summer

The cruel summer is the season after silent spring. It’s hot out. Unnaturally and unseasonably so.

And people aren’t really prepared for it. Whole countries haven’t invested in air conditioning yet. I made the mistake of being outside during high noon. I was under shade and there were fans but I let my insides get simmered a bit while I ate lunch.

The exhaustion that overcame me was enough for ten siestas. A dozen forced naps would easily overcome even the most fervent consciousness. I’d simple done too much by existing and eating at the height of the day. What a foolish hubristic nature this mortal has.

What little defense the air conditioner has against the full force of noon will have to be enough. Sleep will find me if I can find an even small restorative space. One I know will disappear the second the key card is lifted from the auto electricity system.

Categories
Chronic Disease Emotional Work

Day 544 and Want of A Nail

I let something cascade over the past thirty six hours. I knew it would have an expensive energy budget but I wanted to try it anyway. I feel basically fine having made it through the entire experience, but now all I want is to sleep. And thank goodness as the consequences could have been worse than just needing more sleep. And I am reminded of the grief that comes from small consequences.

For want of a nail the shoe was lost.

For want of a shoe the horse was lost.

For want of a horse the rider was lost.

For want of a rider the message was lost.

For want of a message the battle was lost.

For want of a battle the kingdom was lost.

And all for the want of a horseshoe nail.

For want of a nail

I had a bout of perhaps food poisoning yesterday. It was unclear what the source might have been. Bad dairy seems likely. My whole body cascaded into responses. I was itchy and in pain and a range of histamine and emotional responses as the stress cleared through my system.

It’s always an exercise in frustration finding what little mistake or miscalculation sets off a disaster. Something so small can have massive consequences. I suspect it’s more about the power of the compounding effect. Or maybe it’s that giant domino meme. Sourcing backing to one silly little catalyst always shows you the fragility of your own life and circumstances.

I can’t tell if I find this reassuring and devastating. If the biggest life events always come from something small how can we event expect to impact an outcome. Or perhaps that is freeing. If everything comes from some unknown small then of events then we can simply life our lives unbothered by preparations and foresight. Something random is bound to knock life off track.

I think I’ll take the sanguine view. How could I possibly let myself worry when a little detail like a boot of nausea can set off a whole day. It’s a Franz Ferdinand approach to life. Sometimes a spot of political trouble in the Balkans sets off the whole world. It’s always going to be something.

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Chronic Disease Emotional Work

Day 542 and Energy Budgets

I’m not much for active time off. Or being active at all really. I have a limited energy budget so I watch my energy expenditure carefully. Other people budget their money. I budget my energy.

I’ll often find myself jealous of other people who enjoy active hobbies. My husband plays tennis and shoots competitively. Every weekend he is off doing fun shit outside. He could easily play a sport, socialize afterwards and still have the energy to go out for dinner.

Meanwhile I’m probably in bed. I have plenty of fun, lower energy usage hobbies. I read a ton of fiction. I play games. I am working on my foreign language skills (be my friend in Duolingo), and of course I’m a notoriously active Twitter shitposter. All things that can be done while laying down!

And while I love all of those activities I wish that I didn’t have to run the math on how much a coffee with friends would set back my energy budget. I long for the opportunity to simply throw on clothing and head out the door without fear of how that might impact the rest of my day or even my week. But I run on the spoon theory just like your average disabled person.

My fear is that my energy poverty is isolating me. I struggle to explain that I’d love to spend more time with people but I need them to commit to cheaper energy expenditure options. But even the energy required to explain how friends and family can accommodate me is a challenge. It embarrasses me there I need everyone to work around my needs. And I’m often too scared to be demanding about what would work for me. So instead I just spend my time and energy alone.

If you are interested in learning how to make the effort to spend time with someone with energy poverty I hope this post helps. For instance instead of playing a round of tennis, perhaps you could come visit me at home and we could quietly chat on the couch. Instead of going out to dinner we could order in takeout. And no I don’t mean cook at home because then I’d need to plan, shop, cook and clean up afterwards. I very much mean order food on disposable plates so it’s minimal energy outlay. Disability accommodations are not very eco-friendly. It’s a different calculus of resources.

You may have to do a lot more work to be friends with someone managing a disability or a medical condition. If they don’t respond it’s not because they don’t want to see you necessarily. It could just be that you messaged on a bad day and it slipped through the cracks. We need you to actively work to be present for us. It’s a big ask but it is appreciated.

Categories
Travel

Day 539 and Hurry Up and Wait

As summer travel is turning into a source of horror stories and tears, I decided the best way to handle transiting across various borders is to pad every flight with extra time. To hurry up and wait as a strategy.

This has naturally lead to some significant mind numbing waiting issues. Two hours in an airport lounge isn’t as fun as I imagined or even remember. Lounges seemed nicer in the past. Sitting in the liminal with lots of other bored, stressed, and otherwise disengaged humans gives you plenty to watch but little of interest.

My lounge experience went as you’d expect. People giving each other a wide berth while they sip mediocre white wine. Teenagers trying to not to look at their parents in case someone cool passes by. All forms of athleisure and sweat pants swaddling the asses of women just hoping for a comfortable flight. The occasional child demanding a cookie from the two poorly stocked snack sections

When it’s time to board everyone simply mobs the doors. No one care about any system. It’s just a throng of desperation yearning to get on and claim overhead baggage space. I’d like to be irritated as I paid for business class but status is funny that way.

I can’t even find anyone to Karen at to say I’m supposed to be up front. So I wait at the back of the line. No one is following orders because no one is giving them. I packed compact & sensibly but everyone else is testing the limits. No wonder everyone wants to get on as fast as they can. Overpacking must be a stress response.

The entire experience is a war of all against all. If everyone is priority boarding than no one is a priority. It’s just pushing and shoving and giving no fucks. Sadly I give fucks about decorum and politeness so I didn’t have the balls to try to make a run around. I just said and wait and wait. Hurry up and wait.

Categories
Emotional Work

Day 535 and Daddy’s Girl

I hate Father’s Day. I find myself debating if I can get away with a text or an email marking the occasion. I do this as I’d like to make it through the day without crying. I almost never can. Sometimes I just ignore it entirely.

I’ll reach out to my brother and ask how he is doing. He’s the only one that seems to have a better grip on the “our father” feelings. They are complex for me and untangling them is always painful.

I am a Daddy’s Girl. Everything that’s good (and some of what is bad) about me is a refraction of my father’s ambitions, interests, desires and personality.

I got my love of technology from him. I got my career in startups from him. I learned to socialize and leave a good impression from him. I got my optimism from him. I also got my need for distance from him. My preference for keeping my loved ones a little further away is from him. My struggles with intimacy and emotional availability are his too. I am my father’s daughter. I suspect I’ve also acted as a proxy for what he wanted in a son as well.

Even after years of therapy, unpacking how I feel about my father has not made the tender feelings any less acute when I touch them. I merely understand that my trauma is my father’s trauma and his trauma is his father’s and so on stretching back to who knows when. We carry our heritage.

I tell my father I’ve forgiven him for his mistakes. That I understand he did his best. I don’t think he believes me. I hope he does one day. He done what he could.

I am the absolute best of my father’s good traits. I am also the absolute worst of them too. Most of the good I have is because of him and most of the bad too.

Which makes me so angry. The steam rising up that my mother did all of the emotional work, gave me all of the love, and yet here I am a reflection of him and not her.

I’ll never understand how divorced parents can live with that kind of betrayal. To have done all the emotional work of parenting and yet see their child as a reflection of the other one. Anger is usually just hurt. And I do hurt. Not on my mother’s behalf. She is fine. I hurt because I wanted my father to be there too.

My father tried so hard to be a good father. My dad paid the bills. My dad was funny and well liked by everyone but his immediate family. My brother and I love him, but for a long time I don’t think we liked him. Maybe I’m wrong as my brother has been working through his feelings longer than me. Maybe he always liked him. I know we always loved him. I still love him.

I like my dad now. I can see him as a human as I get more distance from my childhood. He can be an old man now and not the father figure that let me down. Which is a relief when I can hold that thought. I see all his good and how he passed it on to me. And I can see how even the bad, perhaps especially the bad, what made me into the woman I am.

He is smart and loves technology. He has never missed a Comdex or eventually a CES. He always has the newest gadgets. His enthusiasm for new things has never waned.

Like other Boomers, his belief in the future and in youth, let him retain a kind of enthusiasm for what’s next even in hard times. And that inspired my entire life’s trajectory.

There will never be a time in my life when I don’t seek his approval. He loves the future and I want to create the future for him. The new and the next will always be for him as much as it is for me.

Which is impressive as the “new” hasn’t always been kind to him. He suffered for his optimism. I have no fear going into this recession because I saw him be broken by one and come out the other side. He is still the same enthusiast he was before the markets crashed and bankruptcy hollowed out his American dream. He got it all back and more. And that belief that we can build back always stuck with me. I’ve never been afraid of hard times because of him.

I’m moving to Montana soon. He moved there first. He’s like that. Always seeing one step ahead. I fought against the idea of Montana for a bit as I wasn’t sure I could make the same decisions he did. Even though I often do.

But I do believe he is right about the last best place on earth. And true to our preferences for distance he will be a comfortable five or six hour drive away. Neighbors in the end but with plenty of space.

Fathers and daughters have it tough these days. Sexism and expectations for how to live are in flux. My father did his absolute best to never let me see myself as anything less than equal. Which isn’t always an unqualified good but I’m still grateful for all of it.

If you’ve ever felt let down by your father even as you know he’s buoyed you up your entire life, then this post might make perfect sense. If not then it may seem offensive to codify the complexities of a familial relationship in public. How could she write something like this? To which I say sometimes the only way to love someone is to say your truth out loud.

Happy Father’s Day Dad. I love you. And I know that to be true because love is having someone betray you, utterly let you down, or even do the unforgivable, and yet you still love them all the same. I forgive you. I am still Daddy’s Girl.

Categories
Aesthetics

Day 534 and Never Go Home

They say you can never go home. I never took the saying to heart as I didn’t have a consistent childhood home for more than a few years at a time. We moved once every two years till I went off to college. And it only got worse from there as I wandered from dorm rooms to illegal sublets over a decade or so of instability. Probably why I’m so excited to be buying a house. For me there was no childhood home where I could return.

But the one place I considered home was Boulder Colorado. I lived in three separate houses in Boulder across five separate moves. The math involved my parents divorce and going off to boarding school for a bit. Yes it’s complicated.

But Boulder as a place has felt more like home to me than any other place. Even New York City where I lived the longest (over fifteen years if you don’t count the occasional breaks to San Francisco) never laid claim to being my hometown.

So I’m feeling a bit bittersweet about the prospect of leaving Boulder. I was running errands today and kept coming across Deadheads at every stop. Dead & Co, the name of the current not Phish, but not not the Grateful Dead, is doing two nights at Folsom Field this weekend. The town is filled with happy hippies. And also John Meyer.

A blonde woman walked into my coffee shop this morning without shoes and no one blinked an eye. Camper vans with Dead decals are parked all across town. I saw a man brushing his teeth in the Target parking lot wearing a tie-dyed shirt. The dispensary was completely out of my particular edibles. The concert crowds had cleaned them out.

It makes me feel a bit nostalgic for how I remember the town as a kid. Boulder was a town filled with folk music and weirdos. We were a hippie town and proud of the heritage. As I came over the hill into town coming back from my raw milk pickup I felt like I could never leave. Look at me doing hippie shit like being in a dairy cooperative. Boulder is still weird I said to myself. But I’m sure I’ll come to feel the same way about Bozeman in time.

Categories
Emotional Work Travel

Day 533 and On My Own

It’s funny how marriage shapes your routines. Before the pandemic, and before my health struggles, my husband and I were apart regularly. We traveled and socialized on our own often.

Now it’s quite rare for us to be apart. With work from home and our new adventures awaiting us in Montana, our lives will remain close. We even tend to speak at the same conferences. Our work travel since the pandemic has coincided almost entirely. It’s a good thing we really like each other’s company as we’ve very much opted into a life together. It’s good advice to marry your best friend.

We have to deliberately take time apart. I even took a trip to Europe in March so we could remember what it was like to have a bit more space. We can’t let ourselves give in to little habits that encourage codependency. A little independence goes a long way. Absence makes the heart grow fonder. Whatever aphorism you prefer really.

The only downside the our attempts to regain a little space is that it’s easy to forget how much the other person does in your life. I will neglect entirely to to eat lunch without Alex. I have been known to mix a bunch of protein powder and supplements into a glass of water. By the time dinner rolls in I’ll be starving and not entirely lucid. It turns out it takes a bit of remembering to bring back ones old skills and capacity. Marriage allows you find new independence and competence together. But it’s nice to remember you were whole and capable on your own before as well.