Friday, March 21, 2014

I Am Apparently My Own Bloodless Coup?

Over the last several days, I've been slowly wrestling with the possibility that the anemia is forever.  That it's not a matter of making sure I get enough of the right kind of iron, that this is not a thing I can eat my way out of.  That something is wrong with me beyond my ability to maintain my own health myself.

Two weeks ago, I had what I thought was the last hematologist appointment for half a year.  Everything looked good, she said, hemoglobin and hematocrit numbers holding steady.  My color is back, my energy is up.  My hair and nails have been growing much stronger and thicker, my skin is better, and I just, overall, feel healthy.

Then, Monday morning, I got a call from the hematologist's office.  My serum iron is in the 30's (normal is 50+) and my percent saturation is 9% (normal is 12).  Four more infusions.  Four more lost days of work.  Four more trips to the chemo lab to sleep away three hours in a Benadryl haze.  Four more anxious moments as I watch the first injection of the iron solution, knowing that if I have a reaction this door may be closed to me forever.  Four more weeks of my body pulling energy away from cognition and motivation, to turn the glut of iron into healthy blood.

What the numbers mean, by the way, is that I'm walking a tightrope of deficiency.  I have enough oxygen in my blood *now*, but one false step and I don't have the reserves to cover it.  One bad nosebleed.  One nasty cut while slicing vegetables, and I can't replace what will wash down the drain.  And as the cells die, I'm at the very edge of being able to replace them.

Through it all, the anxiety.  Is this just what my life is now?  Semi-annual injections of something the entire rest of the world can get from a spinach salad or a hamburger?  Watching for the pica, the shortness of breath, the cracked nails and the diminished energy, all the little ways my body tells me it's failing?  Second-guessing every groggy morning and every brief moment of chill?  Looking, every time I miss it, for a new metric that would have warned me?  Accepting, after each episode, that that wasn't the right way to track it.  Even a home iron test wouldn't have found this; it tests hemoglobin and hematocrit, which were fine.

Adding 'hematocrit' to my spell checker, because it seems I may need to be using it a lot.  It suggests 'crematorium' instead.  No, thank you, spell check.

The scariest thing a doctor can say to you is "I don't know why this is happening to you, and I don't know where else to look."  I have no symptoms of deeper problems, no signs of cancer or internal bleeding or failing bone marrow or my liver gone rogue, mad with the power to destroy blood cells.  That would be reassuring, except...I have no symptoms of anemia either, and I seem to have that.

Feeling simultaneously betrayed by my body, which is refusing to conform to the agreement we made in which I will give it good food and exercise and it will function as I need it to -- and compassionate towards it, because I can feel myself *trying* to compensate, to keep up, to do what is needed with what I have.  It really doesn't help that within five minutes of the confirmation phone call, I started feeling cold and dizzy and weak.  No, I told my feet, I can feel you just fine, dammit.  This is psychosomatic and you KNOW IT so stop it!

The thing is, anemia doesn't kill you, because it's resolvable and treatable.  It's not a thing people really die from, because iron is easy to replace, until it's not.  Once you have a reaction to the iron treatments, your options become very limited.  I've been in the lab, once, when someone started to have a reaction.  He said, "It's swelling.  It doesn't usually swell like this.  Is something wrong?"  I drifted into the Benadryl haze about that time; my last conscious thought was a panicked glance at my own injection site.  When I woke, he was gone.  I don't know where he went, or what his options are now.  I asked, once, what if I can't have infusions any more?  The nurse looked away and said, "Don't worry about that right now.  Just focus on getting better."

The part of my brain I call Traitor Brain is having a field day.

"You're broken," she says.  "You have bad blood.  There are secret things wrong with you, things you should have seen, but now they're going to kill you and you're missing the significance of the only warning you're being given.  This is your fault, for all those years when you couldn't get a job that gave you insurance.  You'd already know what was wrong, but you were too busy being a fuckup to have the stability to find out."

She also says, "Get over yourself.  This isn't a real illness.  This isn't a thing.  You know people with real things.  They have real, bona fide illnesses and you're, what, a little chilly?  Put on a fucking sweater and tough it up.  Look around that fucking chemo lab and then say you're afraid with a straight face, that you're dealing with anything even close to what those people are facing.  You should be ashamed of this, it's stupid narcissistic weakness."

I know that Traitor Brain is a bitch and she wants me to fail.  That's why I named her that.  I've had her on the run pretty well the last year or so, and she's trying to make me pay for it.  I repeat her words here, because when I say them out loud I can hear how full of shit she is, but when she's hiding in my head, those insidious whispers are self-reinforcing.

There's another voice, too.  It says, "Um, what if there's nothing wrong with you?  What if this is you are?  How your body works?"  I have started finding things on web searches that say that with steady hemoglobin levels, lots of women function fine with a serum iron in the 40s if they're not having any symptoms.  That's not far from where I am.  It's possible, remotely, that I am at a confluence of 'does not absorb iron well' and 'turns serum iron into hemoglobin VERY FAST' so that what looks like cruising disaster is actually my normal state of being, and my crises were triggered by something as simple as "eating a heavily vegetarian diet without noticing."  This is where the lack of insurance comes in.  I have hemoglobin levels from 10 years ago, and they were low, but I've never really had regular serum iron tests when I was healthy.  I have no baseline, just the last several years of extremely problematic hemoglobin levels.  And in the absence of that baseline, the doctor treats what she sees, and what she sees is blood on the dangerous edge.  I'll talk to her about the possibility of it, and she's been very receptive, but "I think this may be an OK place for me to be as long as I'm careful" is going to be a hard sell.

I've wrestled with talking to the people in my life about all this, this week, but there are so many people who are important to me, that I knew I'd have to have this conversation too many times, and I'd forget things, or get angry when the same suggestion came from five people who didn't know I'd already addressed and considered it.

The long and the short of it is that while I've always considered my depression a chronic condition, it was something that I didn't really need medical intervention to manage.  It's been something that just *knowing* about seemed to help.  But this is the first time I have fully had to face the idea of the anemia as a chronic condition, one I must maintain with medical treatment, instead of an occasional one.  I can no longer shrug it off as "I should eat more steaks!" and ignore the possibility that there is something to be concerned about.  That's been really hard for me, this week.

And let me say one last thing:  every hemogoblin joke, every Magneto reference, Every goofy picture of iron toys, every offer to staple things to me because "every little bit helps, right?" is a blessing.  Making light of this is helping me, tremendously, navigate a very difficult and scary course.  My twisted, disturbing, irreverent and loving friends continue to remind me that I have chosen to fill my life with the right people.

I love you all.

Monday, March 17, 2014

Of Course I'm Not Picketing Fred Phelps' Funeral, Whenever It Happens

For the last umpty-some years, when people have found out that Kansas is one of the places I've called home, they all want to know what I think about Fred Phelps of the Westboro Baptist Church.

So here it is, in all its glory.

He claims Christianity, but neither exemplifies nor accurately represents it to me.  The Christians I know personally are people of thoughtful compassion, kindness, empathy, and love.

He may claim Kansas as a home, but he also doesn't represent Kansans to me.  Aside from a few frightened and misguided souls, the Kansans that I know are practical, thoughtful, kind and honest people with a sincerely broken political culture and no real idea how to fix it.

He has, for much of my adult life, been a screaming voice of hate and anger.  In recent years his church has become a caricature of itself, nothing more than a toothless tiger against which we take the opportunity to display our own defiance.  As a unifying enemy, the Westboro Baptist Church has done more to unite pro-equality voices than any other single person or group, because they've consistently placed pro-military and pro-gay rights voices on the same side of a picket line, where they could find out exactly how much their love of freedom, peace, and courage overlapped.  The Westboro Baptist Church has spent most of its history making its enemies into each other's allies.

Now, word comes that Fred Phelps, hated patriarch of the hated church, may be dying in hospice, excommunicated and scorned by the house his hate built.  I know a lot of people smugly rejoicing in that knowledge.  I'm not one of them.

Why not?  A couple reasons.  The first is easy: rejoicing at other people's suffering and misfortune isn't how I was raised.  Feeling glad that people 'get what they deserve' always seems to end in *you* getting what *you* deserve, and I'll be the first to admit that on a strict judgment of good acts to bad in my life, I've probably gotten off more easily than was strictly fair.  I'm grateful for that fact.  If that means some others get off more easily than is strictly fair, then I'm OK with that too.

The second is theological.  As a religious pluralist, I accept the validity of a variety of religious paths, including a variety of potential afterlife experiences.  The one thing that remains constant is that you get what you believe is coming to you, but not on your own terms.

At the end of your life, I think you face whatever gods you called yours, to determine the next phase of your experience.  And I believe you're given an understanding, at the end of life, of the near and far reaching effects of how you lived.  How many lives you touched.  How much of your world you changed.  The good you did.  The harm you caused.  And rather than live to avoid hell or a bad reincarnation your next time on the wheel, I think the best choices you can make come from a place of "If you had to account for this to someone without lying to yourself about it, how would you feel?"

As to atheism, by the way, I'm of two minds.  Either you cease to be, just as you always thought you would, or you're given the empirical evidence you always said would change your mind, and what happens next depends on how you change or don't change your perspective.  Same with agnosticism; the real test is whether you were sincerely questioning and evaluating in a search for understanding, not whether you ever found the 'right' answer.

In any case, I think that at the end of your life, you get Answers from the universe and you may well be asked for them.  And I don't envy Fred Phelps, as his days wind down, the conversation I expect he'll be having with his god.  I don't envy him that moment of perfect understanding.  I look at the possibility that he'll fully grasp the mark his life has made, the corrosion his hate has spread, the children whose spirits he destroyed, and I can only find compassion for what he's about to experience.

By all accounts, Fred Phelps is an abused child who grew up to be an abuser, locked into the cycle of abuse as victim and perpetuator, given power by religion and money and pure visceral meanness to spread his childhood damage beyond the usual reach.  I'm glad on some level that his tormented days will end, and hope that after understanding what he's done, and facing all his harm, he can find some of the peace and forgiveness that he's denied for so long lie at the core of the Christian faith.

Because if he's judged as he has judged, what waits for him is far beyond any hell I can imagine.  And whether it would be fair for him to find that hell or not, I fall back, like Marcus Cole, upon my faith in the general unfairness of the Universe.

Friday, March 7, 2014

I Think The Devil Can Speak For Himself

Right now, several states are considering or have recently considered laws that allow companies or government entities to refuse service on the basis of sexual preference.  For many, this is a clear return to the days of Jim Crow policies and 'Men Only' facilities, which divided our access to services and advantages based on race and gender.  It is a battle many people were pretty certain we'd already fought and won (at least from a legal perspective).

This is a complex issue for me.  The debate covers the philosophical, the social, and the practical, and those opinions are in conflict.

On a purely philosophical level, I support icky speech.  This means that I support the right of bigots to be bigots, the right of people to make hateful comments as long as they don't incite violence against others (the "gays are going to hell" vs. "Let's send some gays to hell" differentiation), and even the right of a business to decide whom it will and won't serve -- though I think anyone who wants to do so should have to post, on its door, a list of its bigotries so that I don't accidentally support someone operating from a place of hate.  I believe that if people were required to own their bigotry, they'd fast find out it's not a very good business decision.  I'm a firm believer in the idea that hate cannot long survive the sunshine.  I'm also a firm believer in limiting the power of government to make decisions for businesses.  I support environmental controls, minimum wage, employee protections, but I find myself balking at "You have to serve people regardless of your own philosophical position."  If you don't want to make a cake for a gay wedding, I think that the hammer of government is too blunt a tool to make you; the scalpel of shame is far more effective, though slower.

However, when I consider it from a social level, I have to admit that I don't want the icky speech out there.  The idea of people walking down a street filled with signs reminding them they're unwanted, or having to explain to a child "We can't have a pizza party for your birthday because they won't serve Daddy" is horrible to me.  I have no legal justification for not wanting it, because "The law should protect you from hurt feelings and feeling excluded," is outside my acceptable scope of governmental operation.  But I don't want to live in a society that deliberately agrees it's OK to make chunks of the population feel less-than.  I don't want to be Those People, and I understand that it's very powerful and tempting to want to use the law to do that.

Ultimately it has to come down to the practical.  The reality is that we don't have equal and consistent access to resources.  'Separate but equal' does not work unless both sides are really 'equal' and that's not possible in our current culture.  It's a Catch-22 in that if we *did* have the access to truly equal resources and opportunities that 'separate but equal' assumes, we'd have had to get it by destroying the attitudes and structures that prevent it from existing, so there'd likely be no interest in the 'separate' part.

I'm watching a lot of people discuss this, and it's hard for me because I agree with positions that demand conflicting policies.

Philosophically speaking, a pharmacist shouldn't have to be forced to provide birth control if he believes it's harmful because there should be a pharmacist who will at a nearby store, and people should be able to vote with their dollars.  Practically speaking, there are large chunks of the country where one person's choice in that matter has disproportionate power to reduce the choices and access of others.  Philosophically speaking, your gas station shouldn't be forced to sell gas or bottled water to people you don't want to serve, and if people don't want to shop at a bigoted gas station there should be one nearby where everyone is welcome.  Practically speaking, if it's the only gas station on a 100-mile stretch of I-10 through Arizona, that choice can be a matter of life and death.

Philosophically speaking, a state should be able to pass a law protecting the right to serve who you choose.  Practically, several of those laws (especially in Kansas) interfered with existing federal law, including election law, and could not possibly stand a court challenge.  They were used to smoke out moderate conservatives and divert the equality movement's attention and energy from marriage equality, which has taken on a juggernaut quality in recent months.  Though the laws are indicative of attitudes, it's unlikely that they'll become real, implemented legislation.  They're the flaily hand-waving of people desperate to retain control.

But here's the thing, and the reason I'm not participating in a lot of these conversations:  it's all well and good for me to debate the role of government and the right of people to be assholes, and I'll admit I've let myself get pulled into the conversation a few times.  But when I talk about it, for me it is abstract.  My daily life is not affected by any of these laws, so it's a matter of pure theory for me.

I can't have the philosophical conversation without acknowledging that it's personal for a large chunk of the American population.  We must have the conversation, sooner or later, about how much we want government to force us to play nice with one another.  But, as Melissa McEwan points out, we should never forget that we're discussing the realities of people's lives, the practicalities of their daily experience, even if it's just theoretical for us.

What is for me a thought exercise in access, legislative reach, and the balance of social condemnation vs. legislative control, is for someone else the very real experience of "I wonder who I've been giving money to, who would rather I wasn't but couldn't refuse it."  It's the experience of "The grocery store closest to my house has better prices than the one across town, but I wonder if the very Christian owner would take the opportunity to refuse me," of being told, in small and large ways, that your life is fair game for the judgment and approval of others, and that judgment and approval has the power to completely change the way you live.

And if I can't end the hate that feeds that experience in my lifetime, the least I can do is not trivialize it with Devil's Advocacy.  Because, well, that's not actually a Devil that needs many advocates in the modern world; he's got more than enough already.