Thursday, September 22, 2016

Thoughts on Charlotte

This morning's news brings disturbing reports of protest turning to riots and unrest in Charlotte.  I'm saddened by the riots, because people are being hurt, and cops are using tear gas, and the long-term damage is more likely to affect the oppressed, not the oppressor.  All of that makes me sad and frustrated.

It's in moments like this that I seek understanding, and that understanding most often comes from the words of the Rev. Dr. Martin Luther King, Jr.  Among a great deal of the "advocacy for non-violent protest" we're seeing today, he said, "A riot is the language of the unheard."

We see nonviolent protest every day, and we see those who practice it dismissed, insulted, and threatened.  Beyonce puts statements about police brutality, and the loved ones of those killed by police, into her art and she's criticised for being 'antagonistic' and 'too political'.  Non-violent protests block a roadway, and people shout and scream that they're disruptive and shouldn't inconvenience people 'just to make their point'.  Colin Kaepernick refuses to stand for the national anthem as a protest and other players and teams follow suit; people lose their damn minds, threatening him and burning his jersey in effigy.  When people offer peaceful social protest, we tell them to be quiet, that 'now is not the time' or 'that is not the way' to make that statement.

We see police unions advocating a refusal to protect those who use nonviolent protest to challenge their authority.  Aside from the fact that such a refusal is shameful when compared to the Dallas police who gave their lives earlier this year to protect peaceful protesters, it validates the position of those who distrust police and say that access to justice is restricted by institutional racism in law enforcement.

Rioting is the language of the unheard.  That suggests to me that if we want to stop people from rioting, listening will be a hell of a lot more effective than tear gas.  If we want to prevent the next riot, we need to work towards changing the things that keep people from being heard.  If we want to decry violence, we need to support, openly and actively, those who choose nonviolence.

So, if you've got something to say about rioting, I damn sure hope you had something to say in support of that nonviolent protest you're now advocating, when you had the opportunity.  I'll go so far as to say that if I've heard anything less than support and advocacy for people who use peaceful protest to speak against injustice, I don't want to hear a word from you about riots.

If you aren't hearing and amplifying the voices that ask for justice with peace in their hearts, you don't have any right to condemn those who demand it in anger.

Friday, September 16, 2016

BFFs are Totally a Commie Plot

I'm gonna talk about some things that will sound like Communism to some folks now.

Specifically:  from each according to their ability, to each according to their needs.

If that sounds familiar (which it should), it's because it's a paraphrase of one of the central tenets espoused in The Communist Manifesto, which is where people might get the idea that I'm talking Communism.  I am.

I'm also talking community.

In recent decades, as Americans have stopped living in large extended family groups, as we've moved for jobs or schools or partners to cities where family and the friends of childhood don't provide a close-knit peer group, a lot of us have sought to recreate that social network.

We build tribes, squads, groups, phamilies, whatever word we choose to designate "these people are My People, they are more than friends, we are a unified entity," and what we are creating are communities.  Some are huge (the 'Burner community' or the 'pagan community' which have tens, if not hundreds of thousands of associated people).  Some are small, like a group of six or seven who meet up for dinner each week.  They're online, they're in-person, they spring up at annual events.

We talk a lot about 'intentional community' and 'building community' and 'community standards', all of which is shorthand for "we were all raised with different sets of ethics and morals, with different ways of treating people and establishing relationships, and we need to navigate the process of developing a consistent set of ethics and mores for a group that will thrive and support all its members."

It's a struggle to create space that includes free speech and excludes expressions of hate and bigotry.  Where laughter has a place, but people don't mock each other.  Where those in need are supported, but those with more than they need aren't exploited to do it.  All these things are important, but that last one is especially so, because it contains the seeds of ruination for every community:  unequal resource flow.

This may sound cold, but it's true:  all relationships are transactional, most of them unconsciously.  You may not think "My friend bought me dinner when I was broke, so now I 'owe' her dinner when she is broke," or "My friend has spent seven hours listening to me complain about my job, and I have spent six and a half hours listening to him bitch about his partner, so in half an hour his time is up," but you can probably describe several times your friends have helped you out, and part of the value of any relationship is how much you have personally gotten out of it.

In healthy relationships, the transactions are most likely both unconscious and balanced.  You don't stop to think what your best friend has done for you lately before doing something for them.  You just know that this person makes you laugh, gives you insights, provides real value to your life in being there, and that having a relationship that makes your life better generally makes you want to make the other person's life better.  As the scale expands and more people are added into the relationship, it becomes a community and the value of healthy relationships within that community increases.

One of the things that makes a community a community is the sharing of resources to improve the condition of everyone in the community.  Resources can mean a lot of things: money, space, time, creativity, energy, emotional labor, physical labor, intellectual labor, physical assets like cars or tools, anything that the members of the community share with each other.  That sharing allows the community to do more than its members could do alone, and it 'evens out' the experiences of the individuals, because having that resource pool to tap instead of needing to go it alone expands your ability to handle problems.  Healthy community operates on the same principles as ideal Communist theory: we all put in what we can, and we all take out what we need, and it all balances eventually.

We've all seen it: you've got your friend group, your buddies, and over a few years you build a really solid structure.  No one ever has to carry a sofa alone, everyone has someone to cheer them up after a breakup, you know that if you were about to be homeless there'd be a couch with your name on it till you got back on your feet.  It's all good, all easy, all balanced.

Then something shifts.  Maybe a new member comes in and doesn't quite understand the established give-and-take.  Maybe an existing member suffers several setbacks in a row and just stops trying.  Maybe someone has a sudden windfall that drastically improves their personal resources.  Whatever happens, it exposes a problem you'd never realised: everyone is not working with the same understanding of how community resources should be shared, or even what should be community resources.  The transactional nature of the relationships becomes both apparent, and ugly.

This is a make-or-break point for a community.  If you're genuinely willing to face hard questions with integrity, and talk openly about your own philosophies on support structures and resources, you can come away stronger.  If you try to avoid conflict and force the peace, you can end up with a badly unbalanced community.  It can manifest as someone taking a disproportionate share of the community's focus and resources without demonstrating any inclination to share their own.  It can *also* manifest as someone providing a much greater share of the community's resources, and expecting that to 'buy' them a greater voice in the ethics and philosophies of the community.  There are a lot of possibilities for where the imbalance can lead.  In any case, it's usually based in an expectation that someone should 'win' at relationships and someone else should 'lose' at them: the capitalist model of human relationships.

I've been a manager, moderator, guide, or leader in a number of different communities, and the percentage of them that ultimately failed because of resource inequality is high.  My own failing as a leader was that I was not willing to put the health of the community as a whole ahead of each individual feeling completely included and happy on the terms they dictated.  In trying to meet everyone's demands, leaders empower a few greedy and entitled individuals to destroy what we've built, when we should defend it.

The hardest thing: sometimes this means kicking someone out of your community, or just letting them walk away without trying to win them back.  Someone who may be fun and funny, but who also doesn't feel inclined to support or share with others, while gladly availing themselves of what others offer.  Sometimes it means telling someone that they have to fall, because they have worn everyone out with catching them and they refuse to stop jumping off cliffs.  It *hurts* to do this.  You feel like a bad person, a bad friend.  Guilty.

It means standing up to a bully, saying "I don't care how much you give, you don't 'own' this."  That's scary too, because maybe your community's gotten used to having what this person shares, and if you make them mad they'll take it, and leave.  Will everyone blame you that you can't have pool parties any more, because you told the guy with the pool to stop making sexist comments to the women in the group?

We need to be willing to stand up for the value of our communities as their own entities, as discrete things, and be open and honest about expectations in the group, community ethics and ideals, and goals.  We need to get honest about the real value of people's intangible contributions to our communities, and respect creative, emotional, or intellectual labor on behalf of the community as essential and worthy.

The days of the widespread family unit with consistent traditions and philosophy are gone, and if the structures we're building to replace it are to survive, they can't be based in capitalist theories of 'value' that view 'success' as coming out ahead of others.  They have to be based in a communal understanding that we all do well when we *all* do well.

Wednesday, June 8, 2016

What Now?

As much as it pains me to say it, we appear to have come to the end of the Bernie Sanders campaign.  While the DC primary is next week, and the convention still weeks off, only a major spoiler will remove Hillary Clinton from the position of 'presumptive nominee'.

I have a lot of thoughts about this primary campaign and how it was run, but that's not the topic for the day.  What I'd like to do today, from a position of relative political awareness, is talk to the Bernie Sanders supporters about what to do next.

This campaign has generated incredible energy, immense enthusiasm.  Don't let that energy die.  You can still change the world with it.

I won't ask you to 'get in line' behind Clinton, because there are any number of people doing that, both well and badly.  What I'm asking you to do is find a new star to back, a new focus for that energy and motivation.  There has to be at least one candidate running for something that supports what you believe.

Your local races are important, possibly more important on a practical level than the Presidential race.  In 2016, there are 34 Senate seats in contest, 10 currently held by Democrats and 24 by Republicans.  If the Democrats gain 5 seats, control of the Senate will flip.  Worried about who Trump will appoint to the Supreme Court if he wins, or about Clinton's nominees being blocked if she does?  Put a Senate into place that will support progressive judicial appointments.  Worried about a legislative agenda that further disenfranchises women, minorities, and the poor, or attacks the environment?  Find candidates who'll set a better one, and give them your time and energy and money.

If your Senator's not up for reelection, you can still affect the legislative agenda in the House.  Bigger gains are needed (currently Republicans outnumber Democrats 247 to 188), but the volatility of this race has put a lot of seats in play that might otherwise have been secure.  If either the House or the Senate (or both!) is controlled by the Democrats, that'll go a long way towards blocking harmful choices in the event Trump wins.  If we regain control of the Legislative Branch *and* keep the White House, then we might be able to exert pressure to accomplish some things currently dismissed as unreasonable goals.

Fed up with national politics?  Fair enough.  Twelve states are choosing a governor this election. Unhappy with how state politics are developing?  Looking for better leadership close to home?  Governors have a tremendous amount of power in most states, especially when it comes to whether federal programs and money will be applied.

And last (but so very much not least) there are literally HUNDREDS of state representatives and senators up for reelection, and thousands of local officials.  While you can't really feel that your vote, in your state of millions of people, could possibly really matter in a national election, in a state legislative district that has a few thousand people living in it, every vote matters.  Your city council, your school board, your judges, they all make decisions that affect your real, everyday life.  Putting progressive candidates into local elections means direct policy changes on real issues, and it increases the talent pool for 'upstream' elections later.

How can you help?  Don't just show up to vote.  Pick a candidate to back.  Give them time, give them money, give them attention.  Work for them when you have time, talk to your friends about them, get informed about their plans and policies.  It's a good chance to make a real difference.

If you send $100 to a Presidential campaign, you cover a fraction of a second of a media buy in a swing market probably hundreds of miles away.  If you give them five hours of your time, you're phone-banking to states they think they can win.  The donors who affect the outcome are the ones who can afford to put more zeroes on the check; you're just a statistic.

If you give the same money to a local campaign, you just paid for hundreds of yard signs or mail flyers.  Five hours of your time means five hours of knocking on your neighbors' doors or calling them, talking to them about local issues that affect you all.  That coverage can mean the difference between election and failure for a local candidate.

Many of us chose to back Sanders because he brought the personal to the political, because he spoke to issues we care about, real ideas that have a chance to change the structure of the world.  He spoke of political change as a real, practical tool for making other people's lives better on a very basic level.

We can still do that, and we should.

Monday, May 23, 2016

Farewell

The people who touch our lives all in some way define who we will become.  Some are good, some are less so.  Some shape us with pain, or joy.  Sometimes, a relationship is pursued with the intent to influence, and sometimes, over the long arc of a life, its trajectory is so powerful, so impassioned, that it bends those around it effortlessly.

When I was a child, living with my parents near the military base where my father worked, my parents had a close group of good friends.  On Sunday, we'd go to brunch and then over to the home of one of the couples.  The kids would swim and play, the adults would chat, and in general it created this 'family dinner' atmosphere in a time and a place where all of us were far from our homes and our people.

When the Army runs your life, you don't get connections.  You don't get the same best friend for more than two years in a row.  You don't get a neighborhood where everyone's watched you grow up, where you've played with the same kids since preschool.  You get boxes marked with tape and stickers, packed by strangers every few years.

My parents both came from homes where a premium was put on family, on gatherings and togetherness.  Their last posting had put them in a city where both of their families were within an hour's drive; I was still young enough that I didn't understand you don't get that everywhere.  So here we were, a full day's drive from family, a little four-person unit struggling to make a home.

We got five whole years in Texas, and my parents' friends had long hitches there as well.  So there is, in my memory, this halcyon 'long time' (probably about three years) when my family had a tribe.  At the heart of this tribe were Joe and Mary.  It was their house we went to, into which we were welcomed like family.  I remember so many happy hours splashing around, watching fireflies come out, listening to the happy chatter on the patio.  I remember Joe's boisterous laughter, and Mary's quick wit, and I remember feeling more at home around them than around 'normal' adults.

The most remarkable thing about Mary was that she never spoke to me like a child.  She was direct, kind, honest, and open with me.  She treated people like people, regardless of age, so I never felt 'less-than' in her eyes.  As I grew into adulthood, at some point she transitioned from "my parents' friend" to "my friend" but I can't say when it happened because nothing *changed*.  I remember the first time Dad told me, "Mary wanted me to give you her number, and ask you to call her," there was this sort of awed, "Mary wants to talk to *me*?"  It was like finding out the coolest kid in school wanted to be your friend.  I called her and we chattered away like old buddies, reconnecting and rediscovering kinship.

Outside of my view, there was an entire person I never fully realised.  She was a brilliant and accomplished woman, whose service to her country had real and direct impact.  She was decorated and praised for her years of hard work, and in her personal life she was creative, thoughtful, and passionate.  All I knew was this woman who was smart, and fearless about being smart, in a time when I was learning from almost every other source in my life that I needed to soften my edges and dull my shine in order for other people to accept me.  She told her jokes or made her opinions known, and everyone stopped and *listened* to her.  Not because she was loudest, or brashest, but because she cultivated respect with her actions.

Mary was fearless in how she loved the world, and loved other people, and sometimes I find her legacy in my own heart-forward life.  She was one of the first people I knew to treat love as an act of profound courage.  Though I don't know that she'd have described herself this way, she walked the same Warrior's path I do, armed with fierce love and compassion, fighting for a better world one person at a time.

Whenever I have thought to myself that it's not possible to be both loved and fierce at the same time, Mary's life gives the lie to that, because in all the years I knew her, she had a passionate, dedicated advocate in her husband.  They were partners in every sense of the word, supporting and defending one another without reservation, creating with their love a space where they could stand to help and serve others.  In this day and age, it's so rare to see a match where two people are more together than either of them ever could have been alone -- not because they weren't whole, but because they were committed to each other's goals and dreams.

In her later years, Mary's interests aligned with my own spirituality, and one of my biggest regrets is that I was never able to get her to come out to a festival and experience an entire community of people who share the beliefs in energy, and love, and community that she held.

As I'm sure it's apparent, we have lost Mary, and I am far more heartbroken about it than I thought I would be.  I am grateful that I was able to travel and attend her funeral, but not just because I could say goodbye in person.  I'm grateful because while I was there, I met the other people who had surrounded her, and in them I could see the echo of her.  A turn of speech, a way of seeing, to reflect this woman we all loved in different ways.  Like many incredible people, she collected to herself the bright hearts and fierce spirits that balanced her own, and in her love we could all find a space to stand together and hold her memory.

In her own way, one last time, Mary brought me to tribe and community, and I can think of no more fitting way to honor her than to carry that practice forward.

I love you all.

Friday, February 5, 2016

Cultivation

People who bitch that social media is making is shallow and isolated should reconsider how they use it.

Every day I see, in my feed, my friends documenting their self-care, journaling for accountability in how they treat themselves, talking about the things they experience with tremendous vulnerability and courage, advocating for social change, and speaking in defense of kindness and empathy.

And I see them receive the support, encouragement and love that helps keep them balanced, helps keep them making the choices towards happiness and health, helps them grow and learn in safe and loving space. I see them find others with shared ideals, and delight in the knowledge that they're not alone in the world, even if they're alone in their neighborhood.

This didn't happen by accident. My social space is carefully curated, and it took a lot of work. I couldn't just cut out all the people who disagree with me, because everyone eventually disagrees. What I could do was cut out the people who couldn't disagree reasonably and come to an understanding that allowed the friendship to continue. What I could do was weigh the substance of those disagreements, and establish whether they presented an insurmountable barrier to respect.

I've also had to be somewhat ruthless in cutting those who choose paths other than kindness and integrity. Mind you, these are *my* definitions of kindness and integrity, and I've taken some heat from this friend or that one, for keeping a person who didn't meet their personal standards in my space. Bluntly put, it's MY space. You stay in it as long as you meet MY expectations for conduct within it, and no one gets to dictate what relationships I keep or set aside but me.

When I garden, I do so on the principle that 'everyone works'. No free rides, no spending time and resources on those who don't produce or add to the garden. It may seem heartless, but I will not waste my energy on anything that doesn't add to my experience in some way, even if it's just making the world a generally better place. I technically get no more direct benefit from plants that draw hummingbirds than I do from friends who post travel pictures, except that my world becomes more rich and beautiful as a result. Whenever I have the chance to make a choice that brings more beauty into my space, I do it. When I have the chance to feed a friend's roots and watch the resulting bloom, I do.

But just as in the garden you remove the pests that destroy what is beautiful, in your social spaces you can remove those who destroy. That friend who responds with cheap shots, the person who posts with the intent to use guilt or shame to elicit a response, the family member who blasts daily hate into your otherwise loving atmosphere, you do not owe any of them space in the garden.

That's at the heart of it: you do not owe anyone space on their terms in your life. Not a parent, not a partner, not a lover or a friend or an employer. Not even a child, if it comes to that. You may choose, in the interests of peace or getting through a difficult situation, to allow someone more space than you wish they had because the alternative is worse for you. If possible, treat those people like compost: move them away from the pleasant spaces and let them fester. Allow the rot and waste to feed the rest of your garden, even if it's in no other way than giving you a greater appreciation for what beauty you're able to cultivate elsewhere.

A few years ago, I was looking at a particularly bitter and angry post, and I thought, "Who are you? We have like fifteen friends in common, I have no face to go with your name, and I never get any joy from what you say." So I hit 'unfriend', fearing some sort of backlash, some anger, something, and then...nothing. No drama, no anger, just a single voice fading out of my space. Since then I've used the 'unfriend' button, though sparingly, or the 'unfollow' or even the 'block' if I found that everything someone said made me irrationally angry. When I think about engaging someone, I stop and ask myself, "What will this feed? Can I hope for resolution? Can I hope for a reasonable discourse? Is it possible that others watching this will be comforted if I speak up here?" If the answer is no, then Someone Is Just Wrong On The Internet, and I move on without spending time and energy on it.

It's not perfect, of course. There are still moments when conversations frustrate me, when friends of friends are rude or hateful in company, when someone pipes up with a previously-unrealised bigotry or hatefulness. But I'm learning, every day, how to determine whether something that annoys me is just a passing pest or it's a genuine threat to the peace and beauty of the garden, and when to pull out the pruning shears. I'm also learning what works best to encourage lush and beautiful growth, to cultivate the friendships that will last, and to create, in my personal interactions, a space that feeds me when the rest of the world difficult and scary.

I love you all.

Tuesday, December 22, 2015

Blessed Yule

Winter Solstice (Yule) is one of my favorite holidays.  It wasn't always, tucked into the overwhelming press of events that is Family Christmas and Year's End and everything else.  I used to just let it slip by unobserved, perhaps giving a nod to the first day of winter as I rushed to finish shopping and crafting and all my other obligations.

Over the last ten years, though, I've not only embraced my own darkness, but begun to speak openly about my struggles with depression, loneliness, and insecurity.  In doing so, I've come to understand the meaning and the beauty of the Longest Night: the chance to rest in unabashed faith that the light will come again.

Non-pagans, especially my atheist friends, ask me how I observe the longest night.  When I tell them, "I stand in darkness and believe the sun will rise," they painstakingly explain to me that of COURSE the sun will rise, don't I understand science, that the earth is spinning and this is entirely what's wrong with religion and why people of faith are stupid, assigning metaphysical meaning to basic astronomical events.

This is, of course, ridiculous and completely misses the point.

Of course I know how science works; I'm not stupid.  I'm an educated woman of faith in the 21st Century, with a background in science and a curious mind.  It'd be ludicrous to suggest that I genuinely believed, on a practical level, that the sun was going to go away last night and never come back if it wasn't properly called, if no one held vigil to welcome its return.

And say what you will about the ignorance of history, the ancients approached the solstices with a scientific curiosity.  They observed the changes in the length of days, in a culture where the balance between light and dark and the shifting seasons of the year, laying the framework for sowing and harvest, meant the difference between survival and starvation in the long, dark winter.  They were watching to see that the days became shorter to a point, and then *something* happened, and the days began to lengthen.  Without astronomical tools and study, you're not going to develop a working model of how planets move around the Sun, but lifetimes of observed phenomena will make you feel pretty secure that at some point, the cycle will shift, and you start building massive structures to act as accurate calendars.

So why celebrate the Longest Night with vigils and celebrations, with statements of faith, with a joyful welcome of the sun's return, if we know it's just how the world works?  Human psychology.

Through the month of December, especially in Northern climes, it can begin to feel like the darkness will just keep swallowing the year, that one day the sun *will* set and never rise again.  Anxiety sets in, depression and hopelessness.  The food of winter is hearty but bland and unvarying.  You begin to wonder, "Will I be eating turnips in the darkness forever?  Is this all there is and ever will be?"

And then the leaders of faith, the people who guide your tribe with wisdom, say to you:  Trust us, the light will return.  The wheel of the year will continue spinning, time keeps moving forward.  Someday, yes, there will be an ending of everything, but that day is not today.  Today is the day our calculations tell us that we can stand in the rising sun, welcome it back, and rest in the faith that from this moment, the darkness loses hold and begins receding.  The bitter cold of winter will remain, but this moment, here, this is the turning point of light.  We no longer travel into winter, because now we are moving towards the spring.

The world will keep on spinning.  The light will come again.  Though there will someday be an end, that end is not today.

Into every life the dark seasons come.  At some point, almost every living human has had a night they weren't sure would end in sunrise.  Almost everyone has, at one time or another, wondered if they were staring into the beginning of a permanent, inescapable darkness: it will never get better, there will never be beauty and bounty again, I will never again stand in the sunlight and feel warmth on my face.  I will forever be here, eating turnips in the darkness.

The people who survive the dark seasons usually do so by putting faith in the fact that the world keeps spinning, time keeps inexorably moving forward, and that the cycles of light and dark will turn, as they always have, to return to sunshine and the summer days.  This must get better, we tell ourselves.  The world will return to balance, the cycle of the year will proceed, and if we can just hold faith through the Longest Night, the sun will return, and hope with it.

Not everyone makes it.  Every Yule, in the safety of the risen sun, I take a moment to think of those who held on as long as they could in darkness, but whose grasp failed before the light came.  I have, at various points in my life, been angry at them, been broken-hearted at losing them, felt guilty for failing them, and almost been one of them.  But now, when I think of them, I feed my own fire, building it up in hopes that if there's someone whose grip is weakening, they might be reminded of the sun by the light of my burning.

I love you all, and Blessed Yule.

Monday, October 5, 2015

Getting Blood Without Trading A Pound of Flesh for It

As many of my friends know, I have chronic anemia.  Its cause isn't really known, except that I don't appear to be bleeding internally or destroying my own blood cells, so it's more of a "hey, keep an eye on that" thing instead of a "constant battle with death" thing.

The last two weeks, I've had what could be termed a health crisis, essentially caused by my body's tremendous adaptivity.  Oh, the body says, you figured out you should go to the doctor when you feel tired?  Well, let's make you the same level of tired at life-threatening low iron, as with your sort of average regular low iron, and let's improve our efficiency at the same time we develop asthma that explains all this extreme shortness of breath.  So instead of thinking, four months ago, "Holy cow, this is heavy-duty tired!" I've been thinking, "Yeah, feels like I oughta go see my hematologist before the end of the year."

A couple weeks ago, I made an appointment with a new doctor for the newly-developed asthma and recurring foot pain.  He ordered a routine iron test, which happens most times I visit a doctor and usually triggers a call a day later that says, "Yep, time to check in with the hematologist.  I called her office, and scheduling should call you today or tomorrow," followed by a month of infusions.  This time, it triggered a call that said, "You need to go to the hospital NOW.  You have critically low iron."  They didn't tell me on the phone, but there's a high risk of heart attack and stroke when your iron gets sufficiently low, because, well, there's no oxygen getting to important things like your heart and your brain.

I let the receptionist know I was leaving, and headed to the ER.  I spent the next seven hours or so getting a blood transfusion.  Starting with that first appointment with my doctor, I have had:


  • One doctor's office visit with lung capacity test
  • One iron test
  • One chest x-ray
  • One emergency room visit
  • Two blood transfusions totaling four units of blood
  • One bone scan on my foot to rule out stress fracture
  • One consultation at my hematologist's office, with blood tests
  • One iron infusion
  • One fitting for a supportive boot, including the purchase of said boot
This week I have another blood test, another hematologist consult, and another iron infusion, followed by two more over the next few weeks, and probably a prescription for a daily asthma inhaler.  Ordinarily, I'd be awash with money anxiety.  Many of these are expensive treatments (when my first iron infusion was not covered because of a 'preexisting condition' it cost me a thousand dollars out of pocket).  I know that a lot of people, including my own past self, would look at this list and despair.

I'm not, though.  At this point I have not taken a single cent out of my checking account, and it's not likely I will.  You see, not only do I have what I'm finding out is the Really Good Insurance, my company provides something called a Health Savings Account, with which most folks are familiar.  For those who aren't, I have a certain amount of money taken out of my pay and placed into a special account, and my company gives a lump-sum payment for taking the 'high-deductible' insurance plan -- a lump sum that conveniently covers almost that entire deductible.  I carry a credit card attached to that account, and what this means in practical terms is that I have a reserve of cash especially for medical expenses, that carries from year to year if I don't use it.

I don't say this to gloat over those who don't have this sort of safety net.  I say it because I want people to understand what the effect of that net has been.  Ten years ago, a call to go to the ER would have been greeted with, "I can't afford the ER.  How necessary is this?"  I'd be doing my best to struggle along with Urgent Care centers, wouldn't be able to afford a hematologist, and wouldn't *remotely* be able to afford the blood transfusions and iron infusions.  I don't make enough money that a $6,000-8,000 outlay over the course of two months every year is even a thing I can contemplate.  Every care decision, along the way, would have had to balance "How do I afford it?" and "Can I do without it?" against "I need to buy food and keep power on."  The safety net has left me free to think only of my health and the best course of treatment with regard to my healthcare decisions.

It's also drastically decreased my anxiety levels.  And, well, when you have a condition that increases your risk of a heart attack, and another one that affects your ability to breathe, anxiety can be a serious detriment to your health.  My only anxiety has been around trying to get the infusions scheduled so I can still attend an out-of-state wedding I *really* want to go to.  That peace of mind?  Directly contributing to the expectation that I'll get better.

I joke about feeling 'like an adult' because I have finally established that sort of safety net, combined with a savings account and a steady budget, so that a drop in hemoglobin doesn't completely derail me, but this is not "adulthood."  This is "what living in a developed nation should feel like for everyone."

This sort of security, this ability to make my decisions between me and my doctor, not me and my creditors, for my health is a human right and I believe that everyone deserves that right.  It should be available to the stay-at-home parent, to the entrepreneur starting a business on a shoestring budget, to the self-employed artist, to the fifth-generation farmers working their family's land.  You shouldn't have to take or keep a bad job based on the level of health security you need.

What we have now is an imperfect system.  Some aspects of the ACA, like the erasure of the 'preexisting condition' and the availability of healthcare exchanges, are great.  Others, including the penalties for people who don't buy insurance, are not the best solution for the problem because they still drag insurance companies into the mix and put some families into a pinch.

However, I look at it as a waystation stop on the road to real, fully socialized medicine.  I know that socialized medicine has its problems, but that none of those problems is "Do I go to the Emergency Room because I am having chest pains, or do I pay the electric bill next month?"  None of them is "Can I afford my meds *and* my food?"  None of them is having to do what I have done in the past: putting off essential care, even the basic doctor visits, because doctors get really angry when they tell you that you need a treatment, and you agree, but tell them, "I probably won't get it because I simply can't afford to."  And I've had more than one hear, "I respect your opinion, but I cannot afford to eat if I follow the course of treatment you deem essential," and refuse to treat me at all because I "just don't care about my health."

A lot of people I know argue that the problem is the 'high cost of medical care'.  I won't argue that's a serious problem.  But even if costs were half what they are, or a quarter, I could not easily have afforded the last week and the coming ones, and I'm relatively comfortable.  I get my infusions at a chemotherapy center.  I sit there and look at these people, many of whom can't work, who are spending tens of thousands of dollars a year in a direct and active battle with death.  Even at a tenth of the cost, most of them would have to give up treatment; 'reducing the cost of care' without keeping a safety net in place is not a viable, reasonable option.

Perhaps it's the self-interest of a chronic health condition that makes me an advocate for a centralized, single-payer healthcare system.  Perhaps it's the laziness of not wanting to have to individually bargain down the costs for every procedure I need or spend hours doing cost-benefit analyses of insurance programs, or a pessimism towards us ever having a fair system as long as it's partially run by profit-based insurance companies.  I don't know.

But what I do know is that I have something I want everyone in this country to have: peace of mind regarding my health options, and a life without the fear that a serious illness or injury will destroy everything I have built in my life and leave me stranded, dependent upon others, and hopeless.