This is a long post on how Steemit made a headache disorder that I live with less burdensome over the last year. It describes some of the challenges of living with a chronic illness in the legacy economy, uses the concept of "precarity" to consider the socioeconomic dimension of these challenges, and concludes with my own experience of precarity being mitigated by Steemit and the emerging crypto economy in general.
In the legacy economy, traditionally-defined success is not always in the cards.
Some people imagine success to be a lavish, grandiose thing. Many others work towards a success that looks like higher education, home ownership, sometimes marriage and kids, freedom from debt, and security in retirement. But these versions of success are not for everyone.
In my case, the onset of a nasty headache disorder took mainstream versions of success like these off the table more than a decade ago. Since then, amidst thousands upon thousands of physically torturous cluster headache attacks, I've been able to work just a few hours a week during many months out of each year, with no way to know in advance if my body will permit me to do life at a given specified future time. This condition also places costly and inflexible dietary, environmental, and other restrictions upon my activities.
There are no good options for a person like me in the legacy economy.
Just five years ago, it was possible to live humbly-but-comfortably on art sales, writing projects, and the occasional consulting gig. As the cost of living increased more quickly than my dependable revenue, this stopped being true. So three years ago, I took on a regular part-time job summarizing news reports for a good nonprofit, which - combined with the aforementioned freelance work - provided sufficient income to cover my basic cost of living at that time. Unfortunately, my earnings from all of this stuff quickly became insufficient as the real cost of living continued to skyrocket.
By some measures, my "professional life" is quite successful. I like all of the work that I do, find it meaningful, earn fair wages for the time it requires, and - owing to the inflexible constraints of my medical circumstance - have no other employment opportunities in the legacy econonomy even half as good as what I've been able to put together. In other words, I am living the legacy economy's best-case scenario for a person like me. And this best-case scenario is is utterly inadequate.
The government is no help, and really just makes everything worse.
Although my after-tax income has not exceeded the federal poverty threshold in any of the last ten years, there turns out to be no real 'safety net' for a person like me. In fact, policymakers treat people in situations like mine with contempt.
I was cut off from governmental food assistance years ago, lost all publicly funded insurance last year, and currently have to fork over nearly a fifth of an already hilariously small annual income to the tax man because of how self-employment and other economic activities I engage in are treated by the law. The prevailing attitude in Washington suggests that our political leaders will continue treating the poor poorly while simultaneously making it increasingly difficult to climb out of poverty.
Most parts of society beyond government are just as bad.
Our societal order is structured to make life more difficult than it needs to be for those with chronic illness. It also teaches people to unconsciously act in ways that multiply the burdens naturally arising from having a body that sometimes malfunctions horribly. For a variety of reasons, many in our society firmly believe nonsense like the 'just-world hypothesis', and use such beliefs to emotionally justify their own contributions to this undesirable state of affairs. And there is often precious little that can be done about it.
Of course, I have been dealing with cluster headaches for a long time. And it became obvious to me several years ago that the social and economic problems that came along with this condition were causing far more lasting damage to my life's prospects than the condition itself. Fortunately, by that point, my close friends and family were as kind and supportive about the whole thing as they knew how to be. And having learned to paint again had made it easier for others to see me as an actual person rather than as a mere poor person because it is socially acceptable in our culture for artists to have very little money. But the difficulties presented by my medical reality remained widely misunderstood, and society's at-large treatment of me ranged from brutal indifference to unapolagetic predation.
When I looked for solutions to such problems, I found a million ways to buy a little more time - but most of these did so at the cost of some important bit of life's quality, and none moved my circumstances closer to anything that appeared both sufficient and sustainable. I also found plenty of well-intentioned people ready to tell me lies that they believed to be true about what I could do to improve my prospects. But most of these people spent most of their time actively participating in the creation of a future with no place for a person like me in it, and their advise was nearly always unsound.
When real solutions are nowhere to be found, it's time to get creative.
The acute symptoms of cluster headache are intense and disturbing. Some people deal with these by slapping or punching the head. Others rock back and forth or pace in circles. But properly managing a condition like this is an holistic proposition. It involves far more than dealing with the acute symptoms of headache attacks, and has a social component that is often overlooked in our individualistic culture.
Consequently, part of my strategy for managing this condition has involved learning to talk more honestly and openly about its impacts. With this in mind, a few years ago I put together a very low quality hour-long documentary about cluster headaches. I made a game of capturing the onset of cluster headache attacks while keeping my voice steady enough to narrate what was happening. The thing was shot on my phone and pieced together with YouTube's free software. And the film that resulted is so uncomfortable to watch that most people give up after just a few minutes. But many cluster headache sufferers apparently watched it - sometimes reaching out for support in the comments.
Here's a recent example of such a comment:
"i am sorry to be negative so don't read if you are having a hard time.
How do you guys work with this disease, i don't understand how people live. i have such a hard time but authorities tell me, your attacks are mostly at night so you can work during the day. and once you get fired there is no fall back on social benefits because getting fired is your own fault essentially so there are no unemployment benefits. basically i am trapped. and im so tired. i wish i was dealing with this better meantally.
my neurologist is now sending me to another neurologists because verapamil doesn't work for me. only O2 works and sumatriptan works a tiny bit. do i only use it with O2. i am so so tired. also because they cannot find abnormalities in my mri scan, so neurologists here(europe) are confussed about cluster headaches. i can't work.or study, i have a huge college debt because i had to quite school.
as a woman i always wanted kids, now i feel like i can't because i can't raise them. i can hardly take care of myself and that is breaking my heart. basically i feel like this is robbing me of my life. and my doctors say there is no cure. this leaves me desperate at times. there is however the experimental treatment of neurostimulation, but i am not willing to do that because i can't trust my neurologists to have a clear cut diagnosis of the type of CH i have.
the only nice feeling i have during the day/night is when the oxygen kicks in. the feeling of pain leaving is almost a high because of desperation."
I try to respond to comments like these with something useful, knowing that nothing I can say will solve the real problem:
"I can relate to much of what you say. Varapamil doesn't work for me, either. Neither do any of the other drugs they've tried, really. Industrial medicine is still pretty much clueless when it comes to cluster headaches, but they'll continue to take your money for as you're willing to give it to them.
As for me - part of how I work with this condition is by giving myself permission to have good days and bad days. I also learned how to manage pain with meditation - by staying in the moment, no matter how horrific it may be, until some time has passed, and the moment has changed into something more tolerable. For real. It sucks, but it works better than drugs for managing a serious attack.
Staying in the moment is also how I learned to set aside the fact that most of the life-choices that normal people face - whether or not to have kids, pursue a college degree, etc. - are not choices for me at all. By getting clear about all of the things that I will probably never be able to do, and just forgetting about them, I created the space in my life to focus on the stuff that I actually had control over. Again, it sucks, but it does actually work.
These days, I'm debt-free, have a stable living situation, and enjoy good relationships with friends and family.
Of everything I've just mentioned, the good relationships with friends and family are perhaps the most challenging. People treat cluster headache sufferers terribly, and do not even know that they are doing so. It is on you to educate those around you on what it is you face. Making people watch instructional videos, learning how to disclose my health status without triggering others' stupid and unhelpful unconscious tendencies, and getting comfortable with telling people to fuck right off if they have a problem with my decisions are some of the things that have worked for me.
Obviously, there are people who will never understand. But it is not your fault that you have to live with this condition. And it's not your problem if someone in your life chooses to misunderstand how serious it is, or respond to it in inappropriate ways. All that is really up to you is how you choose to deal with these circumstances that plain bad luck has imposed upon your life. If you can let go of everything beyond the parts of your life where you actually have power, and use these to the best of your ability, I'm sure you'll be fine.
The messages I occasionally receive via other communication methods can be even more heart-wrenching:
"Fellow sufferer. TN Type 2 or ATN. and Clusters. I am just so desperate tonight. Who else could possibly understand. IDK,u seem to have harnessed some ZEN about it all. Maybe that can only come in time. I am 6 years in as of May. NOTHING is helping today. I am searching for scraps of hope...even a droplet of water on a desert floor....I feel cracked and broken. Dying from the inside. Drying up. Any hope u can offer,it's good."
Again, I respond as best I can:
"Hi (name redacted), I got the message you sent about your cluster headache difficulty. Sorry to hear that you're in the middle of this condition's horrors. No one should have to go through what we go through.
It is true that I have made my peace with the headache attacks. But this did not come easy, and the struggle to maintain this peace is ongoing. The truth is that I had no choice except to get pretty zen about the whole thing. After several years of living with this nightmarish condition - when it finally sunk in that this thing would probably be a part of my experience of life for decades to come - the only way I could see to continue living at all was to get serious about making my life work no matter what this condition threw at me.
From the sound of it, you are in the thick of a similar moment.
If this is the case, I will help you through it in whatever ways are in my power. The things that work for me to manage my ch are likely different than the things that will work best for you to manage your ch. But I would be happy to share what has worked for me, or talk through your situation with you.
The most important thing I can tell you is to get yourself grounded and remember to breathe when you feel an attack coming on. Get somewhere safe. Once the acute pain begins, try to think about this pain as neutral information. Forget how you feel about it, because how you feel about it will not do a thing to get you through the pain.
The only thing that will make the pain stop is time, and time is measured in heartbeats and breathing. So take big, slow, deep breaths. Focus your attention on your heartbeat and nothing else. Consider everything beyond your heartbeat and breathing to be meaningless background noise. If your body needs to move, let it move. But don't let your attention wander too far from the heartbeat and breathing until the attack has come and gone.
The stuff that comes up around this condition - whether physical, social, financial, emotional, or whatever - can be just as bad as the acute attacks. This stuff can get pretty complex, and the only way to really approach it is systematically. If you need help doing this, I can talk more with you about it.
(The term precarity, as used below, comes from anthropology lit. A recent email from a futurist friend introduced me to this useful concept.)
The economic precarity that comes along with chronic illness is not caused by chronic illness. It is caused by the broad failure of social and economic networks to meet human needs. This failure is the true legacy of the 'legacy economy'.
My own experience of this precarity is not unique. Dramatically increasing precarity is the rule for large swaths of the population in the US where I live. In a variety of ways - many quite hellish - this is mirrored in the lives of people all over the world. If your needs and capabilities do not conform perfectly to the demands of our neoliberal economic regime, this regime is designed to prevent you from accessing the resources on which your life necessarily depends.
The new economy that many of us are building here in cryptoland provides an alternative to the failing social and economic networks we inherited.
Specifically, this new economy facilitates what has recently been named "Cosmo-Localization", which mitigates the difficulties inherent to increasing precarity. Though it has not yet approached the political dimension of our bullshit socioeconomic status quo, this new economy does have the potential to diminish the importance of such by disconnecting us from the mechanisms through which divisive, oppressive political structures apply pressure to our lives - thereby displacing political power to some extent.
I'm not just talking theory, here. The reason I wrote this detailed post is that Steemit has greatly diminished my own life's precarity. Which is a big deal.
I spent a solid seven months this year in a wicked cluster headache cycle. During this time, I could not work anywhere close to enough to make ends meet. But I had some SP banked, which I was able to draw on when the need arose. And, by making clear information about cryptoland easy to find and understand, Steemit empowered me to make modestly profitable crypto trading decisions, which allowed me to access a bit of extra income earning potential which did not previously exist. Because of this, a life-situation that would have otherwise been catastrophic was transformed into something that was merely very challenging. And, going forward, as my opportunities in the legacy economy continue to deteriorate, a whole world of new opportunities seems to be opening up in the cryptosphere. Which is amazing.