It's The Little Moments That Last A Lifetime

Every so often, something from childhood percolates to the top of your mind and you get a valuable insight to why you are the person you have become.  One of those has been rumbling around my mind this week.

When I was in seventh grade, my best friend was a girl named Dawn.  We had sleepovers and went roller skating and did all the things you do when you are a seventh-grade girl.

One Friday night, we were over at her house after an evening of roller skating.  Because her dad was still out of town on a duty assignment, it was just us and her mother.  She and I unrolled our sleeping bags in the living room and settled down a little after midnight to exchange gossip.

It was a little while later that we noticed someone moving quietly across the front of the lawn, headed for the front door.  Nervously, we got up, holding on to one another for emotional support, and walked over to the front door.

There, clearly outlined against the frosted glass, was the shape of a man.

She screamed.  I screamed.  Her mother came out of the bedroom screaming.  The dog howled and barked.  And the door...opened.  Her father walked in through it, looking both annoyed and confused.  He'd come back early from his assignment, unaware that we were sleeping in the living room, and was trying to come in quietly so as not to wake the household.

He asked us why we were screaming, and we said, "We didn't know it was you.  We thought you were an axe murderer."  What followed then was one of the more interesting conversations of my young adulthood, in which he explained that of all the choices available to us, screaming was exactly the wrong one.  Almost anything else we could have done would have been better.  Calling the police.  Waking Dawn's mother.  Hiding someplace safe.  Getting out the back door.  Fighting back.  He took us around the house and showed us all the different options we had for weapons, and all the best places to hide and hit someone over the head with a saucepan.

His lesson, though a little intense for 2am, was this:  when you're faced with trouble, panic is always an option, but it's rarely a good one, and there are any number of others ranging from 'seek help' to 'get away' to 'fight back'.  If you can keep your head, you can usually do something productive.

If I recall correctly, that was my last panicked freakout on record.  I have been terrified, I have been scared, I have been overwhelmed by a situation far outside my expectations, but outside of a few startled 'someone jumps out and yells boo at me' situations, I don't remember having a single "screaming paralysis of fear" moment since.  And even in those startled moments, I've always been inclined to punch first and freak out after.

Time passed and as Army Brats do, Dawn and I moved on and lost contact.  Eventually, that night fell out of my medium-term memory, but the lesson remained: you have so much else you can do that is not panic, that is not giving in to fear.  There are always options for response and reaction.

I doubt Dawn's dad has ever, again, thought of that night or the conversation.  Probably to him it was just another in the long line of lessons raising a daughter entailed, just one at which a friend happened to be present.  But when I think of all the times that keeping a clear head and putting the fear reaction in a box to deal with later has helped me, a small part of me wishes I could find some way to tell him just how far his words have taken me.

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 just...how 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.

In Which I Admit I Should Probably Not Be President

Today is the 12th anniversary of the attacks on the World Trade Center and the Pentagon, and everyone I know is talking and thinking about them.

I am generally considered a fairly calm, reasonable person in crisis.  Most who know me would say that I am very level-headed, and not inclined to make decisions in anger.

But twelve years ago today, I felt like this.  Fear set in later, but in the first few hours there was nothing but the bloodwrath.  I remember saying, at around this hour of the day, to one of the co-workers with whom I was on a field trip, "Someone did this to us.  I want the people who planned this dead.  I want to find them, and I want to bomb them until they are a sheet of glass in the desert, until they and everything they love are reduced to rubble.  I want to do it with my hands."

A few days passed, and my pain and temper cooled, and I was able to read the stories and marvel at who we became in that moment.  Everyone knows the stories of first responders running into danger and giving their lives to save others, and over a decade later I remain in awe of those who listened to final calls from their brothers on the line and still ran into the fire.  There are other stories, too, that have filtered out.  Two men lifting up a woman in a wheelchair to carry her down flights of stairs, so that she and the people trapped behind her made it out alive.  Total strangers stopping to lend an arm or a moment, supporting someone who'd faltered.  As I watched the news reports, I could see people in the background staggering to reach safety and other people running up to help them.  The passengers of Flight 93, who died in a field in Pennsylvania rather than sit passively and let themselves be used as weapons.  People opening their homes and businesses to the stranded and the frightened, huddling around televisions looking for sense, for meaning, for familiar faces among the survivors.  So many people, reaching for the small heroisms within their sphere of influence, affirming humanity and empathy in the face of terror.

I watched as the world reached out, and said, "Oh.  Oh, we are so sorry.  This is terrible, and we weep for your pain."  We set politics aside, we set old fights aside, and for one moment in time we embraced a shared and common humanity.

However, I cannot forget that if the gods had granted me the power of life and death twelve years ago today, I'd have rained down the fury of my own pain and anguish on anyone I felt was responsible, whether I had proof, whether I had justification.  In that moment, in my wounded rage, I would have gladly accepted whatever the cost to become a dark avatar of furious vengeance.  That is my lesson, that I must be profoundly grateful that the gods did NOT choose to endow me that day with the power of life and death, and that I must always be mindful of the emotions influencing my decisions.

In the aftermath of the 9/11 attacks, a lot of decisions were made.  Sweeping restrictions of free speech and privacy were enacted, laws were passed trading privacy for the illusion of safety, and individual people targeted people in their own communities for retaliation.  A sidewalk bench through a coffeeshop window.  Hateful graffiti on a mosque wall.  Vicious threats against a Muslim community center.  Women in hijab were harassed while shopping or walking down the street, and dark-skinned men were greeted with suspicion and hostility.

My rage passed, and with it my desire for vengeance.  My fear passed, and with it my need to be protected.

I look around, twelve years on, and see that there are people in this country who still allow that rage and fear to divide us.  I see Islamophobic rhetoric, I see militant Christian propaganda, I see warmongering in the name of crushing the Other, and all I can think is that while I'm glad the gods did not give me the power to destroy everything I touched that day, to abandon every guiding principle I cherish in the name of blind obedience to my demons, I wish that perhaps they had not given that power to my fellow Americans, or that more powerful voices among us had been wise enough not to use it.

Resist vengeance, my loves.  Acknowledge your rage and let it pass through you without leaving its footprints in your heart.  If you are frightened, be frightened but never let fear make your decisions for you.  Take time, when emotions are high, to fully understand before you act.  We all carry the potential to be dark avatars of rage and destruction, and we carry the potential to be voices of calm and reasoned response to crisis.

In every moment, in times of crisis and times of respite, we are given choices that indulge one side or the other.  Small choices: "I will not snap nastily at the barista who has screwed up my latte for the fourth time in a row."  Large choices:  "I will not hit that person with my car."  The more power you have, the more capacity you have to make those choices:  "I will not drop nuclear weapons on every suspected al Qaeda stronghold in the world."

The greater your power, the greater your consequences.  Be glad, my friends, that my rage did not find its vengeance, and be hopeful that the echoes of those that did will fade in time.

I love you all.