Tag: Disability

Categories
Chronic Disease

Day 472 and Missing Out

I never had headaches in my twenties. Migraines were a cultural phenomenon I was aware of it never experienced. After I did fertility treatments about four years ago my body went though a number of changes for the worse. I developed an inflammatory condition. And I became acquainted with migraines.

My migraines are the light and sound sensitive type. They leave me nauseous enough I have a prescription just for that. I’ve tried a number of treatments for the migraines prophylactically, but only Imitrax really helps once it starts. If I’m lucky I can turn one around in 3-4 hours with medication and a cold dark room.

Today wasn’t a day where I could turn it around fast enough. And I feel sad and alone and depressed about it. I was supposed to meet friends for a nice meal to celebrate with them and I’m missing it because I couldn’t control the migraine fast enough. Alex my husband made it to dinner with our friends but but alas at home in a dark room waiting for my Imitrax to kick in.

I debated if I could force myself into showing up but it was decided the amount of pharmaceuticals required wasn’t passing a cost benefit analysis. I tried to make a case for it saying if I just tossed enough pain medicine at the migraine maybe I could do it. But the rational vote from Alex was a veto. And he’s right if it takes an opioid to get me out the door that’s not something I can justify for a social event.

The irony is I actually dislike fancy dinners out. I find them to be exhausting. Having to sit on uncomfortable chairs and socialize for two hours is very expensive energetically for me. It probably takes a day to recover from the energy expenditure and I often have to up the doses of my stabilizing medications. I tend not to say yes to them as it’s expensive for me and I don’t enjoy them.

So I don’t know why I’m so upset that I’m missing this dinner. But I am so upset. Maybe it’s because I’ve had months of stability without any issue. When I said yes let’s go I expected to be fine. The last time I recall having a major crash was in early February. Since then I’ve flown internationally, lived on my own, and made it to a crypto conference in Miami with little incident. So maybe I was due for a bit of a crash. Maybe it’s just inevitable that if you push you need to rest.

But I feel miserable, inadequate and guilty about it. Like I should have tried harder. Should have taken more drugs. Or at very least been more upfront that sometimes my body is unpredictable and I find it challenging to have be “on” and in public for social things that aren’t strictly speaking crucial. But now do you tell beloved friends that they aren’t crucial? You can’t really. I just have to hope I can do it. And mostly I can. But not today. Today I couldn’t.

I feel like maybe I owed my friends a performance. I can perform in even dire circumstances. I never miss a dinner or event or appearance at which I’m required professionally. But I don’t hold myself to that stand personally. Sometimes things happen and I just can’t do it and I have to let my body dictate my schedule.

That reality makes me feel isolated and alone. Because I can’t make the same commitments as regular people to socialize and enjoy normal things. There is always the risk that I’ll have a bad day. And I save my energy for work because I have to. So that means I don’t get to have a normal social life like other people. I don’t usually mind but today I do. Today I’m missing out.

Categories
Startups

Day 468 and Small Moves

One of my favorite movies as a kid was Carl Sagan’s Contact. It’s not a great movie but it’s heart is in the right place. It’s a beautiful story about human curiosity and the long timeline of history. In one of the closing sequences the protagonist is told by alien intelligence as embodied by a representation of her dead father that all next steps are “small moves Ellie.”

I never feel like I’m moving fast enough. Every day presses against me. I long to slog through them with speed and alacrity. It’s almost embarrassing how inadequate I find my progress. But then I remember that I move fast. I live ahead of the mainstream. I get to sit in the future that William Gibson said was not evenly distributed. Even if I don’t think I’m particularly good it’s hard to deny just how much of my life is lived in a tiny sliver of humanity.

Someone recently asked me how I moved so fast when I’m dealing with a chronic illness. I found it to be such a shocking question. I feel like I’m glacial compared to the reach of my desires and imagination. But then I’m reminded that even in shorter hours I’m forced to hone my crafts. I can’t afford to waste energy or focus so I simply do not. I imagine this focusing out of need is similar to what parents of young children operate in. The subtle art of not giving a fuck.

And so what if I am slow on a day to day basis. Rome wasn’t built in a day. I’m not a market trader. I invest in ten year cycles. Everything in venture is actually small moves. But as time adds up so do the aggregate of the moves. Compounding interest is up there with gravity as a force. So even when I yearn for more and for it to arrive faster I have to trust the numbers.

Categories
Chronicle Preparedness

Day 451 and Takeout

I’m a little embarrassed that this is the second time I’ve written about takeout on my daily essay series but fuck it I am owning my love of outsourcing food. My fridge has absolutely nothing in it but leftover boxes of takeout right now and I’ve used Wolt every single day this week. I highly recommend if you find yourself in Germany.

When I get tired or overwhelmed or otherwise struggle to manage life food has always been one of my bigger struggles. I just have no affinity for cooking. The people who find it relaxing or enjoyable seem insane to me. My husband is one of those people. He’s a talented cook. I on the other hand have been known to hyperventilate because I set the microwave on fire because I didn’t know you couldn’t put tinfoil in it. Also this is the second day in a row where I’ve admitted to setting shit on fire. I wonder what that is about.

As much as I love traditional skills and think preparedness and homesteading are worthy and even vital pursuits, cooking is just not the skill for me. I’ll garden and handle the animals but please don’t ask me to make a meal. I can’t handle planning an hour ahead of time. My timing horizons are one year or ten years.

This affinity for long term planning is probably why I like planting and venture capital. I’ll happily work towards a long term goal but if I have to pressure myself into a task on a specific day well frankly I’d probably rather set something on fire. I just can’t predict how I’ll be on any given day. And I’ve only got so much energy so why would I use it on anything that’s not crucial or enjoyable.

So fuck feeling bad about it and my Wolt bills from this month. It’s who I am and everyone in my life who is affected by this habit seems fine with it. Well except maybe the recycling and trash bin guys. They’ve got to be thinking “this bitch needs to chill on the takeout boxes!” But also look at this amazing piece of packaging and tell me it wasn’t all with it.

A bison burger in a takeout box
The magic of good recycled packaging

Categories
Chronicle

Day 449 and Lost Time

I lost some time this week. I was living on someone else’s schedule and it cascaded into a wash of hours where I felt like I was completely out of sync with the wider world as I struggled to get back in my own time.

I’m not at my best when I have to push myself to live on other people’s time. Everything shrunk down to my bedroom and my body and my own myopia about righting my sense of reality. I was in a lot of physical pain which pushed me mentally as well.

I started to feel genuinely better and on track around 5pm in Frankfurt. Technically that meant I still had a half day in California to work. But I’d lost the will to push. I needed to regroup. I am telling myself that it’s ok because it’s not as if I work a standard 9-5 job. I can take the weekend to find my way back to the timeline. And if I’m honest some of my best work gets done on Saturday night.

Categories
Emotional Work

Day 448 and Disappointment

I’m feeling disappointed in myself. I want to shake the feeling as I’ve done nothing wrong that warrants punishment. But the feeling of disappointment is lingering which is a double cruelty I’m perpetuating on myself.

I have been pushing myself physically. I know this has consequences. And yet I’m frustrated by my body reacting exactly as I know it will when I run myself down. And worse than that, I find myself negotiating with my body to justify pushing just a little bit more. What if I take this medicine? Will that buy me more time? How dangerous will it be if I just keep ignoring how I feel so I can push a little bit more for a little bit longer? I’m rationalizing what amounts to self harm all because I want my body to be something it cannot be.

I feel like I should know better than to be so cruel to myself. I should let it go of the foolish need to push. What I need is sleep and my routine. I should take my medicine and instead of using the feeling of relief it brings to push, I should use the relief to rest in comfort so I heal and recover.

I hate that I keep relearning the same basic lessons of chronic disease over and over again. But hating myself for being disappointing is of course the pattern I need to break. It defeats the point. The self is not an attack surface. Being disappointed serves no purpose in this moment. It’s not driving me to be better. It’s driving me to be worse. So I’m letting it go. And I’m hoping tomorrow I’ll go a little easier on myself.

Categories
Chronic Disease Emotional Work Travel

Day 443 and Chores

I’ve got a mix of personal and professional and familial reasons I’m spending the month in Europe (mostly in Germany). But one of the reasons was to get some time apart from my husband Alex. Yes I know it sounds kind of shocking. What a bad wife!

We’ve barely been apart during two years of pandemic living. I also had an additional year or two where he was my primary caretaker during medical challenges. My reliance on my husband is something I am very forthright about. I’m deeply grateful for what he has enabled me to do. But we both felt like our marriage would benefit from being on my own for a little as the pandemic becomes more manageable and my health has become stable.

It’s been amazing and invigorating to be on my own again. Anyone who deals with me closely has noticed how much more inspired I am to be in a new place on my own. It’s enabled me to see some of my coping mechanisms more clearly. For instance, my inner child feels safer in the chaos of new things because she got used to moving a lot when I was little. That has given me a gift for startup work, but it also means that I can become resentful and stifled if I feel trapped.

But I’d be lying if I didn’t disclose that a big factor in needing to be on my own was to learn if I could do my own damn chores. Holy shit I still absolutely hate how much I energy it takes to keep me clean, watered, medicated and fed as a moderately disabled person. My husband is a natural caretaker and I will happily enable that.

It’s so much damn energy from my limited reserves to care for myself. Alex has always done it better than I do. But if I’m apart from him I don’t have the backstop of him picking up the maintenance work of my life. I wanted to know if I could survive it. In order to freely accept his love and help I needed to know I could live without it.

And I am. This Saturday was dedicated to grocery shopping, laundry, doing dishes and tidying the Airbnb. I had to lay down and rest because of the effort of my day “off” from work. But I did it. Kinda. I still haven’t put the comforter cover back on the bed. But I’m working my way up to it.

Categories
Biohacking

Day 434 and Taking a Toll

I’ve been feeling engaged and energetic. The combination of a new environment (I’m in Frankfurt) and one of the most dynamic & chaotic investing environments has had me on focused.

But it would seem that my body would like me to maybe take a step back from from the current moment and care for it. As you may know I’m an avid biohacker. This is a screenshot from my Welltory HRV app which is part of my stack. And it is not thrilled with now I’m coping.

That means I should go to bed early and maybe take a day or two off till my metrics improve. So I’ll keep this post on the short side.

Categories
Internet Culture Medical Startups

Day 415 and Accessibility

I don’t think of myself as disabled or requiring special accommodations, though I have a well controlled medical condition that swells my spinal cord called ankylosing spondylitis. But for the first time since my diagnosis I really felt like I was handicapped. And I am feeling so much sadness over the idea that I might genuinely be disabled.

I’m attending ETHDenver and it’s wildly over capacity. No consideration has been given to any kind of basic accessibility. I didn’t think it would effect me though till I got here. I can walk without a mobility aid and if you met me you’d never know I have an issue. But I can’t stand in line on cold concrete for two hours. It turns out I would need a wheelchair for that kind of activity. And even if I had a wheelchair the first two days were in the cold and snow so I couldn’t have wheeled over or around the slush and water.

So I have only attended private parties and small events and group outings. This is great for me as I’m a well networked established member of the startup ecosystem. I’ve got a popular Twitter handle and can easily reach out to people. But I’m noticing just how much a bit of inaccessibility will gatekeep the crypto and web3 community. If you don’t have my heaps of privilege there is no way you could navigate this conference.

And we really need web3 to be welcoming and accessible. To build a better future with infrastructure and economies we all collectively own and benefit from we need an order of magnitude more people participating. But if no one can get in and experience things first hand than web3 will just be a repeat of the oligarchy of web2. It’s honestly my worst fear for crypto. We will accidentally exclude the people who will benefit the most from our innovations.

Categories
Internet Culture Startups

Day 404 and My Process

Being sick gave me an investing process. I have ankylosing spondylitis which is an inflammatory condition of the spine. It’s well controlled but still affects my day to day routines. It means I spend a lot of time in bed on my phone online. And this is how I generate alpha.

I spend my entire day on Twitter, in Discord, in DAO governance chats, in news RSS feeds and on Reddit. I’m extremely online. Terminally so. Like a LOT. I’m talking twelve hours a day. Which has turned out to be great for deal flow and diligence.

Being extremely online gives you some significant tactical advantages as an investor.

  • Persistent read of zeitgeist
  • Always online intaking discourse that will move market sentiments
  • Omnipresent availability to founders and ready to interact

Being online and intaking discourse gives me additional time and analysis with emerging trends, personalities and opportunities. By the time something has gained traction I’ve already made a move. I can move fast and confidently ahead of others because I’ve just had more time with the materials.

In somewhat bleaker terms I already live in the metaverse. Having a disability gave me early access to new ways of living online by forcing me to live a lot of my life virtually. If I wanted to socialize I had to do it in bed. I had experience with this before the pandemic. And I’m already been living where the rest of the world will be migrating now. You are gentrifying my neighborhood.

Categories
Preparedness

Day 387 and Travel Routines

I hadn’t done any travel since the pandemic hit until last week. I’ve probably been in a comfortable at home routine for years (if you don’t count the cross country moves). But last week I went to Montana to do some house hunting. And I could tell I was out of practice traveling.

I used to be on the road pretty frequently. So frequently I started a travel cosmetics company. I was really dedicated to fixing the annoyances of being on the road with travel routines. They can be really simple routines. Always unpack immediately. Get yourself settled in with all your cords and charging stations. Bring your workout clothes. Have nutrition plans and exercise routines that can be adapted for airplane food and hotel rooms. Bring a water bottle. Pack supplements in daily baggies. Learn to fast during your flights.

I could go on and on about the routines that helped me prevent the recovery most travel requires. If you are gone for a week and don’t maintain your routines then you lose another week transitioning back.

I sadly didn’t bring enough of my routines with me to Montana. I underestimated how tired I’d be so I didn’t keep up with my workouts and physical therapy (I’m recovering from an injury which compounded the issue). I didn’t have a nutrition plan so I ended up eating whatever was readily available.

It wasn’t all bad to be clear. I remembered my supplements and vitamins. I went to sleep on a consistent schedule. Even if that meant being awake when it was pitch black outside. Montana is far enough north it doesn’t get light out till 8am.

But I think I could have done a better job not letting the excitement and change of environment ramp up my nervous system. One of the best parts of a routine is making sure you’ve maintained some amount of detachment so you aren’t always at the mercy of what is providing stimulus to your system. Remaining in a parasympathetic state can be a challenge in a new environment as everything reads as novelty to our nervous system.

Even though I’ve been back for 4-5 days I feel like I’m just finally settling back into a comfortable rhythm. It makes me realize just how out of practice I am with travel. What was once a routine event is now again something that requires time and effort. Journeys will once again be out of time and place. Our lives back home will be different than when we are in the road. Maybe that’s a good thing. But it’s not a reality is considered in decades. It makes me feel as if life is measurable worse.