Categories
Chronic Disease Travel

Day 791 and Bathing Suits I’ve Never Worn

I’m on maybe my third or fourth trip to a warmer climate where I’ve brought a Norma Kamali bathing suit. I bought it on sale from Net-Porter as I’d always wanted one of her classic one pieces. I’ve never worn it.

For the casual reader, I have a chronic autoimmune disease called ankylosing spondylitis. It’s an inflammation condition that affects my spine and is aggravated by heat & humidity. Any temperature above above room temperature, give or take 72 depending on the humidity, starts to swell my tissues.

It’s well controlled with drugs but environmental factors can quickly spin up a bevy of symptoms including pain so debilitating I can’t walk. It’s one of the reasons we moved to Montana. I can live a semi-normal life so long as it’s cold. I spend most of my days laying flat in bed or in a zero gravity chair. My disability has become one of the super powers I use to propel my investing alpha. Because what else do you do with your time if you can’t leave bed except monitor financial indicators and chat with founders?

But back to the bathing suit. The black halter swimsuit has turned out to be entirely an aspirational garment. It’s still got the sanitary sticker for the crotch on it that says remove before wearing. I left it in and it’s become the not so subtle reminder that I may never enjoy a beach vacation again. It’s simply beyond my grasp unless I want to pay an obscenely high cost in pain and immobility.

I dutifully pack the Norma Kamali suit on each trip with a warmer climate. I’ve taken it to Miami, Texas, the Mediterranean and Mexico now. For this trip to Puerto Vallarta I packed a second bathing suit. It’s a striped bikini.

I had a fantasy that maybe I’d need a second swim suit as the other would need to dry if I swam every day. Oh what self deception we humans are capable of when it involves something we cannot have but want. I’ve never put the second suit on either. It also has the sanitary sticker still on it. It’s beginning to feel like they taunt me. Isn’t it funny that Julie still yearns to participate in the simple pleasures of life. “That dumb cunt” I imagine them murmuring as I pack.

My father loves tropical vacations. An adults only resort on a beach is his idea of a good time. And for his birthday, my brother and I very much wanted to give him what he wanted. Part of this is self protection as he often forgets to ask after other people’s preferences even if they are for something serious like a disease or disability. Better to avoid disappointment than know for sure. But also if we can give him what he wants why not make the sacrifice? It’s expensive for me energetically but I wanted to spend.

But it’s become clear I can’t make the sacrifices desired for the perfect fantasy family vacation. The bathing suit gets tossed in the suitcase with the knowledge that I can only manage one event outside each day. It’s usually a dinner or a chat.

Then I must sleep it off and work to recover. There is no space for pleasant relaxation on the beach in my body. The compressed Lycra slowly battling the expansion of my tissues as they swell overlapping with stuck lymphatic liquids would be torture. There is no joy to be found and no extra capacity to be eked out that might make the experience mimic the pleasure in a healthy body.

The fantasy is just that. A delusion I have about a life a lost and unlikely to be regained. The after effects of fertility treatments, IVF and living hard to outrun the vicissitudes of capitalism. I’ve accepted it as my lot in life. But it’s much harder to get it across to the rest of the world. And my fear that I’ll be left out and forgotten, that if I don’t fit myself into someone else’s life I’ll be abandoned. And so I rationalize that I’d be abandoned if I don’t at least try to bring the bathing suit. Even though going to the beach is a fantasy.

I hope my friends and family are able to meet me half way but I remain afraid that they don’t know how, or are unable to imagine what it’s like to live in my body. And it would be nice to be met halfway.

Categories
Emotional Work

Day 788 and Duty

I wrote about six thousand words this morning at 5am about seeing your family for who they are and asking that they see you in return. I don’t think I can publish any of it even though it is a very raw piece of writing.

Today is my father’s 80th Birthday. He’s a rare early Boomer from the Silent Generation and he had me later in life with his second wife my mother.

I’ve got a lot of feelings about our relationship. I love my father. Like all of us, he has committed many sins, some of them against me. I have committed many sins against him. We are bound by an elaborate set piece of inter-generational trauma that has shaped us for good and ill.

I am bound by my familial duty to respect and honor the sacrifices he made. I am here to celebrate his life. But my feelings on it are more than I could articulate today and believe me I have tried.

It is my most solemn wish for his birthday that he finds forgiveness for himself as he did absolutely everything he could and I’ll forever be grateful that I was given these rare gifts.

Categories
Emotional Work

Day 781 and Accelerating

I am accelerating into the turn that is my extremely busy life. The global weirding is upon us, as I’ve been predicting for more than two years publicly on this blog and even further back in the press and on Twitter.

I was initially afraid that I wouldn’t be able to keep up with a faster life. One reason we moved to Montana was to keep the pace of our personal lives calm and level so professional obligations wouldn’t overwhelm us. And yet as more and more obligations and responsibilities became part of my daily reality, I wanted to shrink under the weight.

But I am not shrinking. I am standing tall. Sure I feel like I’m failing every day and I hate the feeling that I could disappoint folks who have placed capital and trust with me.

I am however sure that over the time horizon I have set I am doing things the right way. Everything else is luck and repeating the positive daily habits that have produced results in the past.

I feel happy with the acceleration if I stop giving the fear any oxygen. I’m starting to remember how I used to wield my talents. But this time I’ve got the benefits of five years of emotional maturing from intensive family systems therapy. I see my old coping mechanisms and bad habits withering as I bring the full maturity of my emotional journey to bear.

If life is going to keep getting faster and faster then I suppose my only choice is to enjoy the thrill of acceleration and trust that I’ve done the work to stay on the ride.

Categories
Politics Preparedness

Day 779 and Future Shock

It feels like a lot of people are finally catching up to what a shit show institutional distrust has wrought on American society. Nobody trusts anyone and everyone is going tribal. The level of panic is feeling palpable across media narratives and we are being offered a choice to either get worked up or get on with our lives.

I will admit I feel a little bit smug on this point as I’ve been prattling on about doomer shit forever. But I also got off my ass and moved to Montana and starting picking up some skills so I could continue to feel like my life had some measure of resilience to it. I ain’t getting all worked up about the end of the world because I can’t live in perpetual anxiety.

Maybe it’s because my parents are hippies that it’s not a big stretch for me to imagine what happens when cultural conventions break down. The post war generation had a whole other set of traumas around social change. And a lot of splinter subcultures emerged from how they were specifically betrayed by all major institutions as well.

So I am reluctant to say this is new. Decline is a long slow managed process and new revolutions turn up all the time to solve our problems. I believe in human ingenuity.

But I do think we’ve sped up the pace of culture as we ramped up new technology as each new instance of connectivity has somehow also wrought alienation and anxiety. It’s hardly surprising that half of the internet is in a complete panic over what rules of the game changed.

What can I say except that it’s so satisfying to lie to yourself about how you benefit each time a cheat code is revealed. Perhaps just enjoy the power and get on with it. I don’t know what to tell you to do but find a way to make peace with it. Because otherwise you will be preyed upon. There are thousands of kinds of power and I suggest you find yours.

But I am genuinely concerned that we are headed to a further and faster and new types crisis of meaning as new rules get introduced, and every actor that desires to hold power will be running to capture it.

And I do mean everyone. It’s not that your tribe is good and the other tribe is bad, rather it’s hard for humans to trust each other with too much power. Independence is a very heavy burden and it’s insulting when you won’t carry your share. We’ve been negotiating the boundaries of it since Socrates got poisoned for corrupting the youth of Athens. And we still don’t have a good answer to what constitutes human excellence.

Categories
Emotional Work

Day 775 and In and Out

I am a bit overclocked. I’ve written about it before and the language is useful so I am quoting myself to remind myself what needs to be done.

It will just take some time to let all the cortisol spikes drain out and the other sundry overstimulation issues to get back to baseline.

I am thankfully not experiencing any of the typical anxiety I have felt in the past when overclocked. I just feel tired and shitty and like I need to had off some of inputs to my team.

I’m noting this all here and keeping it short as I need to get in and out so I can get back to the business of recovery as I have so much to take advantage of in my life right now. And the only way I can do that is continuing to maintain the routines and rhythms that got me to this good spot in the first place.

Categories
Emotional Work

Day 774 and Too Fast & So Slow

This post should be filed under “time is not linear” as it feels like a number of things in my life that have been moving slowly, yet inexorably, towards predestined conclusions. And they suddenly sped up towards escape velocity. I feel like I had a force multiplier effect on a bunch of things that just took time to come to fruition.

However I wasn’t fully prepared for how much change was hitting catalyst points until, one by one like dominos, a whole cascade of things began to fall into place.

I saw years of work and trust and love and possibility tumbling and crashing into the waterfall of my life. And I’ll be honest it’s hard to come up for air when it happens. But it feels amazing.

My happiness is apparent to everyone around me. I feel beyond loved. I am not even tempted to go into spirals of feeling unworthy or ashamed. Everyone simply worked too hard to achieve the kind of lives required to fall into the glorious momentum of getting everything you ever wanted. It could all explode but wouldn’t you regret not trying? I know I would.

Categories
Emotional Work

Day 772 and Spoiled

For as much as I write about pain, both emotional and physical, so much of my life is saturated with joy.

I was asked this week “when will you accept that you are happy” and I was thrilled to find myself blurting out in agreement “It’s true I am so happy.”

Crawling your way back from a life event that gave you ego death is no easy journey. You either accept that you are responsible for yourself or you don’t. And really bad shit happening to us like illness or divorce or death loss tend to be deeply clarifying.

I feel so spoiled by the life that my choices have given me. For all the mistakes I made, and they are numerous, I on balance made the right calls. I have never felt more loved in life than I do right now. I’ve got what I need and I felt brave enough to go after what I wanted.

I’m surrounded by people who care about me for me. And it’s such a luxurious feeling to be given the space to be yourself. It’s even better when being yourself is the thing that everyone loves.

A Friday night surf and turf feast with filet and crab.

I spent so much of my life fitting myself to my circumstances. And now here I am stretching out to become more of myself and I find myself rewarded for it. Last night my husband and a dear girlfriend made a magnificent surf and turf dinner. Just a restaurant quality meal made by my loved ones at my own home in Montana. And then we all watched one of my favorite movies Margin Call

Crab with lemon & parsley
Categories
Emotional Work

Day 770 and Worst Month

I beginning understand why February is considered the worst month. I don’t want to be misconstrued here as I love winter. I’ve been absolutely loving my snowy, sunny Montana winter. But a bunch of shit is going absolutely tits up wrong for people I love.

But like the viral video says, February is an honest month. Grandmothers end up in the hospital every day. Dogs get old and get put dow. The the circle of life happens every day. Jobs are lost and bills go unpaid every day. If they happen in July or over Christmas, we bemoan the bad timing. Layoffs at Christmas we say with horror! I guess February is better in some minds for bad news.

Maybe we need to come to terms with the fact that bad shit happens all the time. When it overlaps with something happy, like a holiday, we’d be upset that our holidays are ruined. And yet if they don’t overlap with anything nice we are sad that life is too bleak. What moments of cheer have we to enjoy in February but candy hearts and the Super Bowl?

The part of me in therapy is reminded that it’s me who decides when I’m a victim of a circumstance. Bad things are as common as good. It’s cold truth of life has always been that it’s filled with the greatest joy and love and the price for those things is the deepest pain. Nothing in this life is free.

Categories
Emotional Work

Day 769 and Behind

I feel behind on everything. It’s a source of anxiety that I cannot seem to shake. If you’ve been following along you’ve seen some interesting and intense types of emotions play out.

I want to beat myself for being behind. The need for guilt and flagellation is ever present. Then I remind myself that the pressure is self inflicted and my time horizons are long. If something was due this week or next, the relevant parties either got their deliverables from me or can wait.

I will allow myself the space to be scared to be behind. I’ll allow myself the space to be ashamed I am behind. And then I’m going to allow myself the space to just be behind. Sometimes we cannot see the bumps in the road till we’ve come upon the pothole. And I feel like I found a couple expectedly deep divots in the road of my life.

Categories
Chronic Disease Emotional Work

Day 767 and Abandonment

I called someone today with whom I have a standing appointment. They didn’t pick up at first. I called back a few minutes later when they didn’t return my call.

They picked up on the second call back. They didn’t seem entirely healthy. I found myself scared. My inner child dove immediately into a pattern of abandonment and distance as I tried to cancel and give them a way out. I blathered on about how it’s usual time and I hoped I wasn’t invading their privacy but if they were sick I could rescheduled as it was obviously no big deal.

Julie” they said to me firmly but kindly. “Stop telling me how I am.”

I sat back on my heels at that. I hate it when people make assumptions about how I feel. Rather than listen, people will simply make assumptions about how I am and what I can or cannot do. If you hate feeling pitied then this will probably seem quite familiar to you.

It’s not uncommon for people to work through their own issues on illness, pain or disability when talking to me. While I have an invisible disability from a chronic disease called ankylosing spondylitis I do make it known that I have this diagnosis. I even treat it as a part of my edge at work. But it’s just a fact that I’m in various degrees of pain because I have swelling in my spine. It’s arthritis basically just inconveniently located.

But despite it being a public part of my identity, most people have no idea. I don’t look sick and I mostly don’t act like it in public as it’s kept under control with modern medicine. But I’ll have bad days. Or I’ll have to ask for an accommodation like sitting down.

And that’s when I learn a lot about a person’s relationship to illness. I’ll get pitied. I’ll get babied. I’ll get pep talks. I’ll get praised. I’ll get ignored. I’ll get written off. It’s never about me but entirely about the other person. It’s a little bit like seeing someone’s tell in poker. Most people have got one.

In the past I’ve let myself be invaded by these feelings from others. And it made me sad. I felt abandoned by all these people around me who couldn’t see me for me but instead saw their own feelings mirrored back to them. I felt invisible. I got treated like a cipher for disability or illness.

But underneath that little drama, an the actual person names Julie would be left alone to watch them play out their emotional theater. But I am done feeling abandoned by it. I don’t have to let anyone else tell me how I am. And it’s entirely up to others to decide if they can manage around me. I don’t need to make it my problem. I’ve got no need to abandon myself for them.