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.

Categories
Emotional Work

Day 766 and Friends

The worst part of getting back on Instagram has been the number of people who said welcome back. Now you might say that sounds kinda nice. And for the extended universe of people with whom I casually socialize, yes it was nice. But for the people I considered to be friends it was fucking insulting.

I left Instagram before my health troubles but the overlap on the timing on the two isn’t wide. Its mostly concurrent. It’s hard to post the kind of aspirational lifestyle bullshit that the algorithm prioritizes from bed rest. There is a reason Twitter and long form blogging on WordPress are where I spend my social media time.

A significant portion of people in my bucket of friends simply disappeared from my life when I disappeared from their lives. When I stopped reaching out they stopped reaching out. My timing certainly wasn’t great as my health imploded around the time a lot of my peers got married and had children. Totally acceptable reasons to be busy.

But I also I learned the hard lesson that most people are so busy keeping themselves afloat they don’t give a fuck if you are dying. Because they are struggling too. Yet it’s hard not to have a sense of abandonment when people don’t reach out across any medium except what’s proximate and convenient for them.

I went to so much trouble putting myself and my entire journey online. I knew I was harder to reach as I couldn’t leave the glide let alone my own bed. So I reached out from the pit of my own despair and hoped someone would see my hands reaching. And a whole world of people did. I made a lot of new friends that way.

I’ve literally written hundreds of thousands of words about my journey. And all of it is conveniently tagged and linked and is searchable. If you wanted to read about pain management or biohacking or my medicine regiment it’s all here. I’ve even written an FAQ on how to reach me. I am one of the most accessible people you will ever reach. I made this this space because I knew I had to reach out lest I be abandoned.

So when a bunch of socially networked acquaintances said “welcome back” on Instagram, what I really heard was you were never my friends in the first place. And that felt sad in a way I wasn’t expecting. I’m sure was true that most people were not my friends. I always knew was true for the vast majority of people. But it was sad to learn it was true for people I’d felt close to in the past.

For the handful that were actually friends, it was a bit disappointing to see what distance, time and sickness has yielded for my expectations. I hadn’t heard from them in years but they still think we are friends. And I don’t know how to break to them that no actually we aren’t. I have come to expect more from people.

Categories
Emotional Work Medical Politics

Day 765 and Kobayashi Maru for Women

I woke up to a totally off handed tweet of mine going viral. I had done some googling on the cost of pregnancy surrogacy and learned that it would probably cost $200,000 a pop. I’d never really considered the cost as to be honest as I didn’t think I’d be having children that way. The responses to the tweet left me feeling despondent.

Five years ago I did IVF to freeze embryos (and eggs too) and it kicked off a massive health crisis that I only feel I’ve gotten under control recently. It took everything from me. I was on medical leave, I sold my startup, and my marriage got to learn what “in sickness and in health” really means. It was awful. I am crying just remembering.

It took years to get healthy again. Of course, I first had to get stable at all. I spent years, and a huge chunk of savings, biohacking my way back to a body healthy enough to work. I’m thrilled to be back doing what I love most which is working with early stage companies. But work wasn’t the only goal of getting healthy.

I’ve had a fantasy that if I just kept at my biohacking that one day I’d be off all these medications. That I could truly be healed. That all this trouble and heartache wouldn’t be permanent. That I could heal myself. Unsaid in all of that, is that I cannot be pregnant and on the medications that saved my life. How is that for a kick in the teeth.

I’ve got two embryos and ten eggs and a fleeting dying ember of hope that I could ever carry them. I don’t know if having them via a surrogate is my path forward. Maybe there is still hope I could be healthy enough. I frankly don’t know and I’m not ready to say where my fertility is headed.

All I know is that this feels like a no scenario. That having a child in America is a fraught and expensive endeavor even when everything goes right and you are healthy and young. There is no winning as a woman as any decision around family is going to upset someone.

It’s the Kobayashi Maru for American women. Juggling your partner (or partners), your money, your home, your health and your fertility means balls get dropped. You are going to lose somewhere. And it really hurts.

Categories
Homesteading

Day 763 and Winter

When we first decided to move to Montana basically half of the questions people asked us were about the weather. “How are you going to survive the winter?“

I would kind of humor people with stories about how I grew up in the Colorado Rockies and I’ve got Swedish heritage. I had a whole bit about how I was suited to this by nature and nurture. I meant it to be a bit funny but also reassuring. I really am suited to be happy here.

But these days Colorado winters are milder than Montana ones. Global warming trends when combined with a sunny high altitude meant sometimes you can ski in a tee shirt. You’d be surprised at how warm it feels when it’s 40 and sunny.

So I really hadn’t experienced a good cold in a while. And even as a kid, Colorado cold was honestly a lot warmer than an Illinois winter and certainly warmer than a New York one. It’s one of the more pleasant winters you can experience and still have seasons.

And yet here I am in February in Montana and I honestly love it. I love the cold. I love the snow. I even love days with cloud cover. I take great pleasure at looking out over the snow in our pasture to the frosted pines on the mountains barely more than a mile away. The air is always crisp and you can really breathe here.

Montana summers might be some of the best weather this good earth has to offer. Between the cool evenings that stretch the day towards 10pm and the absolutely majestic views, it’s no surprise someone called it Paradise Valley. But I honestly couldn’t love the winters more.

Categories
Emotional Work Medical

Day 762 and If It’s Not A Yes Then It’s A No

I was supposed to drive my husband to an appointment today. I’d put it on my calendar and was prepared to make sure it happened because that’s what wives do right? It was an easy and obvious yes. I didn’t think anything of it.

Around noon I noticed I was becoming intensely sound sensitive. I asked my husband if it felt really bright outside even though we had cloud cover. I felt a little bit nauseous but I’ve been taking some antibiotics so I dismissed the symptom.

It was only when some silverware clattered onto our wooden dining table I realized something was wrong. I full on screamed. I jumped and shrieked liked like a poisonous spider had just bit me. A massive overreaction to a noise that objectively was neither that loud or that threatening.

“Honey, is it possible you have a migraine?”

Alex Miller

Despite the litany of easy to diagnose symptoms, I had managed to ignore the obvious. I had a migraine. And from the looks of it a pretty severe one.

I’d woken up feeling amazing so I wanted to tackle the day with all the energy I had. But as it waned I got angry. If I’d bothered to look at the emotion I would have seen that underneath the steam of the anger was hurt. I felt betrayed by my body. I had a 95% recovery score on my Whoop. How dare it let me down? So I just ignored it.

The kicker to the story is I kept trying to ignore it. I took one Imitrax even though it seemed like a two Imitrax migraine. Alex asked me if I was sure I would be OK to still drive him this afternoon. I waffled a little bit and said I dunno I am sure it will be fine once the migraine medicine kicks in.

I don’t like to drive after taking Imitrax as it tends to make me a little sleepy. And I really wanted to help Alex by driving him. So I just took one and hoped for the best.

An hour later Alex came into the dark bedroom and said “honey you know if it’s not an immediate yes then it’s a no, right?”

Apparently I did not. I took another Imitrax and Alex found another ride. Hopefully I learned my lesson.

Categories
Startups

Day 761 and Calls

Yesterday ended up being a big day for me. A couple projects that have been in the works for months for final confirmations. That meant I spent a lot of time on phone calls yesterday.

I hadn’t planned for Monday to be so busy. I have therapy in the late afternoons so I tend to back my mornings but I still leave enough breaks to come down from the energy and excitement of a big call. I find synchronized communications to be a little overstimulating so I like to meditate and do Wim Hoff breathing to break down my cortisol levels.

But I couldn’t make it happen yesterday. It was too much back to back. I went from an hour long fact checking media call right into my two hour group therapy session. I’d had a few other smaller calls before it as well.

My earbuds were the first to note the issue. With about fifteen minutes left in my two hour Zoom I got the 10% battery left warning from my AirPods. My technology realized it was time to recharge before I did.

And boy was the decay quick. The AirPods went bwoooop and went dead. I could feel myself getting a little dazed myself. As soon as I was off the call I checked my HRV using Welltory and found all my systems were drained. Too many calls has called on too few resources.

Categories
Biohacking Emotional Work

Day 754 and Smooth is Fast

I like to move quickly. With my enthusiasm for generating momentum, I can easily get myself myself into trouble. I’d bet you can remember a time when you accidentally slowed yourself down by trying to go too quickly.

The phrase “slow is smooth, smooth is fast” originates from the SEAL teams but the purpose behind it can be applied to all situations. There are many situations when we want to react quickly and start moving, but in your efforts to move so quickly, you end up slowing down the operation

Chris Fussel, McChrystal Group

I was rewatching William Gibson’s Peripheral and happened to hear the SEAL slogan from one of the main characters Burton. As his sister Flynne scrambles he reminds her that slow is smooth and smooth is fast.

I am taking that to heart today as I’m itching to get a bunch done. But I am still a little jet lagged from being on Europe time and I woke up a little bit sniffly and a low recovery score on my Whoop.

As tempting as it is to beat myself up about feeling behind on work or scold myself for deliberately slowing myself, I am reminded that there is a reason high performance teams like the SEALS believe slow is smooth and smooth is fast.

Categories
Emotional Work

Day 753 and Strong Routines

It feels good to be back in Montana after a long journey home. I’m relieved I won’t be going anywhere for a while. I spent yesterday resting which felt appropriate on Sunday. But today I needed to get myself back into my typical routines. I was up at 6am and immediately began searching for my rhythm.

I am often frustrated by how much energy I put into maintaining a steady restorative routine. I like to live and work hard, but as I get older the best way to maintain productivity seems to be putting good habits at the forefront of my life. I have to fuel myself to go the distance.

I’ve got a number of deals I’m working on this quarter and I’ve got fundraising to do, so I’ve got to make sure I’m on my game.

I dutifully took all my supplements. I worked out. I meditated. I did hot and cold work. I ate a nutritious lunch. I did chores like my laundry and unpacking. I cleaned out my email inbox. I got my schedule in order. I set my goals for the week.

Having had a productive working Monday, it’s now time for Monday evening emotional work. I stack my personal therapy and group therapy back to back on Monday. I usually write afterwards but I thought I’d get down some basics before as I am still just jet lagged enough I might prefer just going to bed afterwards.

Categories
Travel

Day 752 and 24 Hours

I cannot remember the last time I pulled an all nighter. Probably something related to Black Friday sales. But in order to travel back from Prague to Montana I was awake for 24 hours straight across three flights and four separate airports.

I hadn’t really intended to be awake for the entire trip but because one has to pad timing around flights these days, every leg of the trip involved three or four hours between flights or an extended delay that has me running.

I was awake at 5:30am in Prague for a 7am flight that boarded at 7am. I arrived in London at 10am GMT after delays. My Heathrow to Denver flight was meant to department at 1pm. That 9 hour flight was the most pleasant part of the journey but I didn’t want to nap during it as I was concerned it would make my jet lag significantly worse.

I landed in Denver at 3:30pm Mountain time which is 7 hours minus GMT and 8 hours behind Prague so it was 10:30pm for me. I was dragging as that was a long day in and of itself. And frankly I’m used to living off a hub like Denver so a final leg of the journey was a new experience for me.

It was snowing in Denver which had created a significant backlog for takeoffs as everyone needed de-icing. I made a made dash for the 1:30pm Bozeman flight that was delayed to 4pm. I sprinted through Global Entry and back through security but the doors had already closed. I had to wait for my originally schedule 7:30pm flight.

Miraculously that flight was only delayed to 8pm because of the weather but I still found myself sitting in Terminal B for hours as my energy flagged and my spine started to hurt. My body clearly knew it was time for me to be in bed but here I was under florescent lights, eating a Caesar salad at a chain restaurant, waiting for one last flight.

When we boarded at 8pm it was 4am for my internal body clock. Thankfully the 700 mile flight from Denver to Bozeman is only a little over an hour. We touched down at 930pm. By the time I got to Alex waiting for me outside I had been up for exactly 24 hours.

I crossed a contingent, the English Channel, flew over the arctic circle and through another continent, which is an impressive territory to cover in a single day. But what a long day it was.

I slept from 11pm to 10am MTN to make up my sleep debt for the all nighter and I am still pretty tired. That was the equivalent of sleeping till 5pm. It all felt very collegiate to sleep through “the entire day” even though I am now settled back into my original time zone.

My Whoop recovery score was a 24% so I was pretty into the red from the whole experience. But I should be ready to spend the week on the proper time zone so I suppose it was all worth it.

Categories
Aesthetics Travel

Day 743 and Wandering

I took some time to go wandering today. I’ve been in Prague for six days but it’s been such a mess I haven’t actually felt like I’ve been in the city.

I like to get to know cities by walking. If I’ve only been in a cab or an Uber I don’t have a sense of place. I need to walk to feel like I’ve landed in a place. While I love a good resort destination now and again, I find it hard to feel grounded without being able to roam.

I wonder if being raised in a small town affected this at all. I wasn’t really a suburban kid. We had suburbs in my town but you still went to a downtown core where kids would walk from the library to the high school to the pedestrian mall. Walking was entertainment for my teenage years.

Now as an adult I find nothing more liberating than just walking for as long as you can. Being wedded to a destination or a GPS mapped route feels too much like having to do something or be somewhere. But wandering around with no place to be tastes like freedom. You are still in charge of your own life if you can go for a long walk with no purpose.