Being chronically ill doesn’t make me a better person, but it does help me identify jerks

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I assume people think surviving illness changes you because there’s something inherently character-building about pain. But what happened wasn’t a struggle, in the sense that through perseverance I overcame something difficult. For a fairly brief but unexpected period of my life, I lost my capacity to work, to advocate for myself, to navigate life and all its frictions. For much of my illness—intubated, drugged, feverish—I simply wasn’t there. In my absence, there were more than 25 individual doctors and specialists, an army of nurses, the friends who loved me enough to take care of my affairs while I was under, some unknowable number of insurance agents sitting behind desks in another state, silently placing checkmarks next to my claims.

via How to Not Die in America 

Most people would say they care about sick and disabled people, but most people won’t vote for politicians that support the health and social services necessary to keep us alive, let alone allow us to thrive. Stop being a jerk and start campaigning for medicare for all and better support for people with disabilities.

Please visit me at home; everything is too much

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The disability associated with severe cases of migraine extends far beyond days spent in bed. Online, people talk about the ways that migraine has rendered them housebound. Driving, for instance, can be difficult; shifting lights trigger migraines and drug side effects cause clumsiness. People with migraine stay home because they fear perfumes or other foreign smells that can make them sick, or because they are simply too tired or hurting to venture outside.

– Joanna Kempner in Not Tonight.

Arriving at work a few weeks ago, I was mildly surprised at how easily the door at the bottom of the stairwell opened, but too absorbed in the book I was listening to to pay it much mind. But I was jolted into full awareness of my surroundings when I couldn’t get the door to my floor open. I took out my headphones and heard a wild whooshing and my heart sank.

One of my most reliable triggers for migraine attacks are rapid changes in barometric pressure. My building’s HVAC was undergoing some unannounced maintenance that day and the work had set up strong pressure gradients throughout the building.

I was optimistic. Maybe I wouldn’t get a migraine – I’d been doing so well lately and how big a pressure difference could the HVAC system realistically cause? Even if I did get a migraine, they often take hours to develop – maybe I’d make it to the meetings I had planned that day anyway.

But 45 minutes later my aura started and I headed home, angry and demoralized.

I often struggle to work 10 hours a week. Getting a migraine on a day that I was well from something I could have avoided is infuriating.

I often work and socialize from home. I simply don’t have the energy to navigate transit and stimulating environments every day. But I also have so much less control over my environment outside of my apartment and that carries very real risk for me.

 

Voting with your dollars has some serious problems

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Who needs city housing regulators when AirBnB can use data-driven methods to effectively regulate room-letting, then house-letting, and eventually urban planning generally? Why not let Amazon have its own jurisdiction or charter city, or establish special judicial procedures for Foxconn? Some vanguardists of functional sovereignty believe online rating systems could replace state occupational licensure—so rather than having government boards credential workers, a platform like LinkedIn could collect star ratings on them.

In this and later posts, I want to explain how this shift from territorial to functional sovereignty is creating a new digital political economy.

via From Territorial to Functional Sovereignty: The Case of Amazon « Law and Political Economy

Boring patients with boring diseases

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When focusing on the paper crackling between my chilled skin and the vinyl of the exam bed wasn’t enough to distract from the discomfort of my treatment, I asked my neurologist why there are so few specialists for migraine. I’ve been seeing a specialist in stroke for the last 5 years while I wait for a spot to open up. He told me that migraine is a boring disease to treat. I tried not to move as he started a series of injections in the base of my skull.

Migraine affects more than one billion people. During a migraine attack, people may suffer severe pain, nausea and vomiting, painful sensory sensitivity, perceptual disturbances, profound fatigue, confusion, and other neurological effects. Attacks last many hours or even days. A fraction of patients with migraine develop a chronic form of the disease. Isolated and relatively infrequent attacks become nearly continuous and many symptoms, such as light sensitivity persist between attacks. The World Health Organization classes severe chronic migraine with its most severe disabilities, on par in its effect on quality of life, productivity, and financial security to quadriplegia, terminal stage cancer, and severe depression. Including less severe variants of the disease, it causes more total years lost to disability than all other neurological disorders combined.

Migraine has a whole host of neurological symptoms and causes noticeable neuroanatomical changes and brain lesions, but the genes associated with migraine largely act in the cardiovascular and gastrointestinal system. Reconciling the neurological symptoms and changes with genetic findings is a fascinating puzzle that could illuminate complex connections between bodily systems and lead to treatments for many disparate diseases.

And with all that, research funding is 10-100x lower than for other diseases with similar individual and population level burdens, treatment options are limited and have considerable tradeoffs, and neurologists find it boring.