Tag: Disability

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.

Categories
Biohacking

Day 374 and Intolerable

I’ve always been prone to extremes. I don’t like to do things half way. Half-assing things is pointless when you’ve got a whole ass. But sometimes this tendency to pull a “Peaches” and go full on even if it physically harms me.

I’ll look for any excuse to push myself. If a diet app tells me to eat whole foods I’ll stress myself on the perfect blend of clean eating. If it’s good to walk 7,000 steps a day I’ll set a goal for 12,000. If I want to write more I’ll commit myself to writing every single fucking day for a whole year. Commitment isn’t my problem. Excess is my issue.

On Friday I had physical therapy for my ligament tear. The therapist was working on evening out the tension points I had from overcompensating. She told me to work a lacrosse ball into my muscles until the pain wasn’t tolerable.

Now for most people this would be good advice. You’ve got to release the tension and work out the tenderness in the fascia. For me it ended up being terrible advice. I pushed so hard I have enormous bruises up and down my leg. But the poor therapist had no idea I’m so dedicated to extremes I’m willing to hurt myself to follow advice. The average person probably shies away from the necessary pressure. Me on the other hand? I’ll push till my body gives up on me.

Categories
Chronic Disease Uncategorized

Day 372 and Pace Yourself

I was in an incredible groove yesterday. I’ve been letting go of the awful December I experienced and enjoying the new January energy. If you look at yesterday’s post I was absolutely in the zone. So I pushed myself thinking I can handle full capacity day. Mistakes were made in my enthusiasm. And well I’m probably in need of a rest. I over did it.

I often struggle with pacing and moderation. It’s important for me to remember that I’ve got a history as a workaholic. But I don’t want to feel as if I can’t push myself either. It’s the middle path I must walk. But it is hard to stay on it. I feel like every day I am sliding off the middle path right into the ditch. I’m getting better at getting myself back.

I used to be happy mailing elaborate detours. I’d take every exit on this metaphorical path in the past. But tonight I’m going to remind myself I’ve got a destination. And that is being responsible for keeping myself happy and healthy. So I’m going to get in bed and watch some TV and shitpost on Twitter

Categories
Medical Preparedness

Day 354 and Covid

The worst has happened. After nearly two years of being ambiently aware of Covid as a risk in the world I have tested positive. I honestly didn’t think I had it. I feel a little bit sick. I briefly ran a fever. I mostly felt the malaise from the inflammation. Little did I know that the game had changed with Omicron. That was all Covid.

I think we are in the middle of public communication crisis. The new symptoms for Covid are not severe coughing but the sniffles. And the vaccine doesn’t give you neutralizing immunity. It sure does help reduce the severity of the infection if the mildness of my symptoms are any indication. I worked several days before I realized the extent of the illness. And in no way had we reduced our daily caution. The only time I spent indoors with other people was when I had to go to urgent care for a torn ligament in my ankle.

I’ve got to be honest. This is going to happen to you. It’s happening fast and you probably didn’t see it coming. From when Omicron first got identified to me getting ill was less than two weeks. We have a rapid test shortage which means only those with flexibility and money will know if they are sick.

It’s going to be a very ugly month. Not because anyone is going to get extremely sick. But rather a lot of us are going to be a little bit sick. Let’s be gentle with each other when it happens. We are all going to be really miserable together.

Categories
Chronic Disease Medical

Day 352 and How To Be Sick

Everyone I know seems to be sick right now. My husband is sick. My media friends are sick. My finance friends are sick. My random internet friends are sick. No one is in bad shape but everyone is miserable. If Omicron is as transmissible as it seems you’ve got a good shot at getting sick in the next month or two even if you are fully vaccinated. Don’t panic. I’ve a ton of experience being sick so let me give you some advice on how to get through the misery in one piece. Being sick is an opportunity. You’ve got this.

Drink lots of water: basic but crucial. Down a full glass of water every few hours. Set a timer. Being hydrated is key to your body flushing out gnarly stuff.

Stay in bed: your body has diverted all your energy to your immune system to fight off invaders. You are going to be tired. Don’t try to overcome it with stimulants like coffee. That’s just going to make it worse. Accept that you won’t be as focused or as energetic. The less you try to push through it the faster you get better. Cancel everything. If you want to get back to normal the fastest path to that is letting yourself heal.

Intake lots of nutrients: your body needs all the help it can get. Now is not the time to restrict calories. Eat vegetables and high quality protein. Eat healthy fats. Take a multivitamin. Consider taking Vitamin C and Zinc. Drink broth as it keeps you hydrated and gives you nutrients. Here are some ideas from the Cleveland Clinic.

Take care of yourself: tempting as it may be to order junk food, binge watch tv and doom scroll social media, you need to build up your vitality and constitution. This is what had worked for me. Being in bed tightens up your muscles so do a basic stretching routine for ten minutes twice a day. Don’t overstimulate your autonomic nervous system. Go out in the sun and keep your circadian rhythm normal. Meditate even if it’s only a few minutes. Do deep breathing. Take a hot shower even if you can’t stand up for too long. Brush your teeth and your hair. Talk to to your family and let them know how love them. If you have the strength do something artistic or creative. You must maintain your humanity. That means finding rhythms that build you up.

Accept Help: being sick robs you of many of the building blocks of modern identity. If you have built your self acceptance on concepts like hard work and being productive, it’s going to make you feel shitty when you are in bed and can’t do anything. Being sick is a reminder that self acceptance is the key to happiness. You are more than what you do or produce. You are a human being worthy of love simply because you exist. At your weakest and your sickest you are as worthy as at your best. Be ready to accept help from others so you can accept yourself. Be ready to be cared for by others. You do not owe anyone anything. Your existence is enough.

Chances are you are used to feeling healthy. Being sick is going to rock your reality. But you will overcome it. Cultivating empathy for yourself is the best path for doing so. Don’t judge yourself. Care for yourself as if you were your own child. Without judgement. Good luck!

Categories
Biohacking Finance Internet Culture Medical Startups

Day 350 and Web3 Healthcare

Imagine you’ve got a disease with a clear biomarker. I’ve got an autoimmune condition called ankylosing spondylitis. One of the ways to spot it on a blood test is to look for an elevated CRP or sed rate.

Maybe I want to find a way to connect with other patients. I provide proof of biomarker to join an autoimmune discord just like you provide proof of ownership of an NFT like they do in the Bored Ape Yacht Club. Maybe I want to join a group of other patients who are pooling their medical data so they can stop being in an N of 1 and have a chance to participate in new research for my own disease. I could join AutoimmuneDAO and contribute to funding, meme-ing, and researching my condition. If we discover a treatment protocol or drug through our DAO we’d have ownership in it. Imagine a token for your own patient DAO. This isn’t as crazy as it sounds. VitaDAO is doing this for longevity research. This is the future that web3 can bring to healthcare.

Quantified self and biohacking have improved my health significantly. But on its own my personal health data has little value. You would maybe pay me a few cents for my biometrics. The real value of that data is in the aggregate. That’s why I pay Whoop to manage my HRV data and why they won’t offer data interoperability.

The value is in the algorithm. But without me and without my data it wouldn’t be worth anything. They have a product and an algorithm because of my biometrics. And yet we’ve found no way to meaningfully integrate ownership and interoperability in healthcare yet.

Let me give an an example. There are multiple companies that make their money by recruiting clinical trial candidates. Why? Because you need aggregate data to run a study. Those companies have the same basic data analytic team as a marketing team at a direct to consumer product company. They know how much a patient (or customer) is worth and the cost to acquire them. You are worth a lot because you represent a demographic that has value in its totality. And yet most clinical trials fail to recruit people because patients just don’t see a benefit to participating. You’ve got no ownership or upside and the costs are significant. So science suffers.

But what if instead of being valuable to marketing and recruiters you could own a portion of the aggregate? Being a token holding biomarker “proof of disease” validated member of a patient research DAO flips the incentives. A breakthrough on a disease that treats you and you’d also own some of the proceeds of it’s intellectual property. Whoever brings web3 to healthcare is going to be doing a significant good for humanity. Web3 can improve diseases, move forward science and get us all paid.

Categories
Medical

Day 336 and Inaccessible

I’m probably still in shock. The last 24 hours have been a whirlwind of favor trading and phone calls and begging as we try to figure out the extent of the damage to my ankle. Something is broken but still need an ultrasound and an MRI to assess a full recovery full protocol. We are mostly hoping I can avoid surgery. But we will know more once I meet with the orthopedist tomorrow.

The only upside to this mess is living in Boulder Colorado we’ve got access to the best sports medicine on the planet. We were able to get excellent recommendations on in orthopedic specialist and thanks to wonderful friends secured an appointment within 24 hours.

I’ve also got an incredible primary care physician that has spent the day putting together all of the basics for healing and recovery. She thought of everything from bandaging to mobility aids to supplements. And she makes house calls.

I am however pretty shook up and in a lot of pain. I misjudged crutches this morning and took a terrible fall trying to get to the bathroom. You never notice how inaccessible the basics in life are until you need help getting onto the toilet. I am going to need round the clock help for a bit until we figure out how to install things I can lift myself up on. So maybe my upper body still will improve? But otherwise it’s pretty dehumanizing.

I’m also stuck on the top floor of our three story townhouse as the only way to get down the stairs currently is on my ass with the scoot and lift method. Thankfully Alex doesn’t seem to mind me using his office desk as a dining room table for a bit. They are too narrow to carry me down so this will be a bit tricky for the time being. We can’t have me on the middle floor as there is no bathroom and the downstairs doesn’t have a bed so this will have to do for now.

Categories
Chronicle

Day 335 and Ankle

I was going for a walk and misjudged coming down a stair. We’ve got tiny stairs of rock and wood and hand poured concrete in the courtyard of our complex. They aren’t the most even. I don’t know how I came down so hard but Alex said he heard something as I came down. I tried to get back up and put weight on my foot and immediately collapsed. I must have screened loudly as everyone came running.

I couldn’t make it up the stairs to get back into the house. I had to scoot myself up the stairs using my arms to lift me and shimmying my ass. I kept trying to test if could manage any pressure on it. I had tears running down my face and my iPhone giving me tachycardia warnings.

I initially crawled myself upstairs to get in bed so I could elevate and ice. We weren’t sure if it was a sprain or an actual broken bone or ligament. We called around to see if anyone had doctors who made house calls. The last thing I wanted was a four hour emergency room visit while I was in excruciating pain. But eventually the feedback from a virtual visit was I needed X-rays as it’s not a good sign that I can’t apply any pressure to it.

The urgent care center got me a boot and crutches and I’m waiting on the X-ray results. I am so angry as I don’t want a random health thing requiring surgery and physical therapy and months off my feet. I feel like I just got to a great place with my health recently. To have a set back with my existing issues would have been more of the same. To have something new feels profoundly unfair.