Recycling

To all my family & friends who have visited, called/messaged and especially tolerated my doped-up rambling, thank you.

This is a post about other posts. I’m recovering well from surgery, but I have to limit my time on the computer or it starts generating nausea-inducing special effects. Also, I’m re-reading David Foster Wallace’s A Supposedly Fun Thing I’ll Never Do Again and his writing humbles me to the point of paralysis. Further justification for my laziness: while this blogging thing is wonderful, too often posts appear and disappear like calendar pages flipping by in old-timey movie montage of time passing. I wish some would stick around longer.

I had my first blogging anniversary while I was recovering, and looking back at posts from last year, there are two that stand out for me:

You Know Where You Are? You’re In The Jungle, Baby : This helped me forget that it’s February in MN for a few (much needed) minutes.

The Vargus Debacle of 2010: On dolphins and other dangerous dashboard creatures. And how funny Urban is.

They were both written around and about the time we went to Belize, which makes me wonder if we should be thinking about a vacation. You know, for the sake of my writing.

                    I can make sacrifices for my art


But true love is better than a vacation. Urban wrote a moving and romantic  post about my illness and his experience as a caregiver (he also threw in some helpful post-surgery care tips). Isn’t he sweet? Yeah, and more than that …

 
He’s trouble  

By turns funny, sweet and troublesome (i.e. perfect), lately Urban has just been really supportive. Not only with the surgery stuff, either.

I have an article at the Huffington Post that I’m very proud of, and not only for the obvious reasons. It’s the first thing I’ve submitted to the HuffPo that wasn’t self-consciously written for the HuffPo. Like, I just wrote it because I was going to fucking implode with rage if I didn’t. Deciding to send it in to my editor came later, and after some deliberation over how much of myself I really want to share with the public.  

There a lot more to say about all of that, but that is a post for anther day. I’m tired and the screen is getting all wiggly.

Thanks for the love, y’all.

The Witch of Endo pt.2 : It only hurts when I laugh

*I know a lot more people are reading this blog, so be warned: I swear. And I’m crabby. If that will bother you, go away. For inspiration and non-swearing, read my HuffPo stuff or look at pics of kittens.*

It’s time for the unique Haas holiday held in January: SAUM’S SURGERY-FEST! Practitioners of this tradition explain that its purpose is to drive out the malicious spirit “Endometriosis.” In ancient times, it was celebrated several times a year, but modern innovations such as controlled diet and Cranio-Sacral therapy have reduced this once quarterly observance to a mere annual event. The surgery in a hospital is only the beginning of this holiday; the bulk of the festival is observed at home and goes on for a week or two. It is characterized by curtailing professional responsibilities and social interactions, imbibing analgesic narcotic substances, and taking part in activities resonant of childhood: eating soft foods, reading comic books, watching animated cartoons and being cared for by a responsible adult (Urban). This way, the whole Haas family can celebrate together! 

Ok I’m done trying to be funny. Here’s the deal: the Endometriosis is back, I’m in pain all the time, and I’m having surgery next Thursday: one day shy of a year since my last surgery. My goal was to make it a year. I know, I know…almost. It should count. But still. ONE FUCKING DAY! Come ON.

I have no reproductive organs left so how come I still have a reproductive disease? 

Actually, that’s not true. I do have a cervix, although they want to take it out. I’ve drawn the line. Leave my cervix alone, you bastards. It’s mine and you can’t have it.

So, it’s nothing life-threatening or even organ-threatening. We are just doing another laparoscopic clean-up surgery: I think of it as being vacuumed out, but it’s much cooler because there are lasers involved! I’m like a superhero!

All-Natural Cleaning Supplies

It’s no big deal: I’ve done it at least a dozen times. But you know what? It sucks. I have health insurance, an incredibly supportive husband who takes care of me, I won’t get fired for being sick (plus I don’t make any money anyway), and it still fucking sucks. Every time.

My body doesn’t give a damn what I do or don’t have time for. I resent this. You’d think after all these years I’d have gotten a little better at acceptance, a little more graceful. Nope. I bitch and swear and stomp around (well, I cant really stomp right now but I would if I could.) I listen to loud music and sulk. I stay up all night and worry. I draw: traditionally, this has helped. I try not to lose my shit. I breathe. But still…

I took this semester off to focus on work. I have a huge amount of paperwork to do to get my 501(c)3 (non-profit organization) off the ground, the Healing Center is opening this spring which means I have to start paying rent, which means fundraising—Headwaters/Delta has a grand total of $20 right now. I can’t afford to lose (at least) two weeks of work. But I’m going to and that’s that.

And don’t give me that “my sister had a laparoscopic procedure and went back to work the next day!” crap. Fuck your sister.

Hair-Metal Wisdom

The worst part of this? I don’t like surgery, but I hate needles. I HATE hate them. My veins hate them too. When I was in the hospital in 2002 (or 2003? it blends together), they wanted to put the IV thingy IN MY JUGULAR because my other veins were so surly and uncooperative. I was like…nope. Sorry, before that happens I’m going home and I’m taking my un-punctured Jugular with me. Figure something else out or find someone else to operate on. They figured something else out. I still have the scar in the bend of my elbow.

Luckily I have surgery frequently enough that everybody in pre-op at Abbott knows me now. It’s wonderful to be greeted enthusiastically by my surgery team (“Spending much time in New Orleans these days?” “How’s school?” “How are the horses?”) but it’s sort of depressing, too. At least when I come in, they know to get Scottie: Magic IV-Starter Dude. Scottie begins with a massive shot of Novocain in my arm so he is free to dig around without me shrieking at him. So, that’s not too bad.

Ok, I’m tired now & I’ve had enough of trying to hammer this out in a way that might be comprehensible to other people. I don’t know if I’m trying to be expository or descriptive or what. If I could tell you one thing it would be: the absence of pain after sustained pain is not the lack of something. Being-without-pain is a full feeling. 

When I come to after surgery, even through the immediate pain of having my guts yanked around, I will feel a gorgeous sensation which signals that Endo is no longer eating me from the inside. I will be free. It will fucking rock.

For a year, at least.

The Witch of Endo

The Witch of Endo, part 1

This just in: It’s really hard for me to ask for help. I’m sure you’re shocked.

I had a midterm due at the beginning of the week; I have been dealing with pelvic pain from the endometriosis and feeling crabby and useless. I had every reason to ask for an extension on my papers but…I felt like a loser. I didn’t want to ask. It was hard to admit that I *couldn’t* do it. I hate “can’t.” I hate it in myself. I would never judge another person who asked for an extension on a paper because it felt like their pelvis was eating itself (and, actually, with endo, that’s not far from what is actually happening) but oh no, not ME. I can do anything, dammit. Except I can’t. It was humbling to look at my notes strewn around me, books piled up, Word doc open and ready to go, and realize: I can’t fucking do this. I need to go to bed.

I have two choices when I’m in pain and have a paper/project due: I can grit my teeth and work through the pain, or I can take a painkiller and work through the narcotic haze. The pain pills work pretty well but they make it hard to focus, retain information and express myself coherently. In short, everything I need to write a paper.

I have learned the hard way that the pain will not just go away because I ignore it.  Ignoring it will make it worse. So although I am capable of working through it, I will pay for it when the work is done. Often that payment is more than I can afford and --listen to me! I feel like I have to justify my decision to not stay in pain. It’s a little excessive. I have such little sympathy for myself.

There is some crazy part of me that believes that if I wish hard enough, or do the correct breathing exercise, or stop eating dairy (for the record, I’ve tried: it’s bullshit) or something, this disease will go away. So if it doesn’t go away it must mean that I don’t want it gone enough. Some strange part of me thinks I should be able to wave a magic wand and make it all go away: some part of me believes I can do anything, so why can’t I do this? It’s like the dark, distorted side of empowerment. I’m always hearing how tough people are, they beat cancer, just fucking kicked it to the curb. I don’t even have a life-threatening disease and I can’t kick it out of my own way, never mind the curb. It makes me feel inadequate and weak. 

Now I know that makes no sense, but at the same time I don’t know it. I remember being at the pre-op appointment before my last surgery, going though the litany of diet, meds, everything from the previous few months, trying to figure out where I went wrong, when my surgeon, who has been my doctor, therapist, advisor and friend for the last 20 years (yeah, I’ve had surgery often enough that I’m buddies -–good buddies-- with my surgeon)-- looked up from his note-taking, waited for me to stop, then said “Saum, this isn’t something you did.” I burst into tears. Because I needed to hear it.

I don’t have magical powers (Or if I do, they’re not that kind of magical power, but only good for conjuring 80s power ballads and rain). What I do have is a disease with symptoms I can’t predict or control. I have issues with giving up control –- and, baby, it is allllll about giving up control.

I also have a TF who rejected my request for a 48-hour extension on my midterm but instead gave me 5 days... and said if I needed more time it was not a problem. I burst into tears then too. Luckily I was just reading an email so there were no witnesses.

Something else my surgeon said that day has stuck in my head: Men are stronger, but women are tougher. They are also tougher on themselves. I don’t know if that’s true, but it certainly resonates. I doubt that it has anything whatsoever to do with my gender, but I have high standards for myself: I push myself, I love a challenge, and I do stuff that I am afraid of doing. I don’t give up. I think those are all good things. But, I also judge myself very harshly. I would never speak to another suffering creature the way I speak to myself.

Sometimes I think I’ll never be enough for myself. I construct and overcome hurdle after hurdle: going back to school wasn’t enough, I had to get into Harvard. Getting into Harvard wasn’t enough, I had to maintain a 4.0…and ok I’ll admit it, there’s times that I think my 4.0 at Harvard is worthless because all the really smart people are over at MIT.

There is a part of me that, assuming I get an A in this class, which I will move heaven and earth to achieve, will feel like I don’t deserve it because I got an extension on my goddamn midterm.

It’s telling that while pain is part of my everyday life, it’s not something I’m comfortable talking about. It hurts everyday, and I don’t just mean physical hurt. I have not ridden my horse in over a month. I live to ride, and I cannot ride.

I have blogged about pain it in the past but it’s something I struggle to express. I avoid writing about it. I avoid talking about it. I’m not registered with the disability support office at school although I ought to be. Ignoring it doesn’t make it go away, but it does keep anyone else from knowing about it, from witnessing my vulnerability. I want to be tougher than I am.  I want a life that is miraculously free from “can’t.” I don’t want to need help.

But I’ve realized, while writing this, that needing is good for me (sorry, Buddha). It opens a part of myself that would otherwise remain closed. It humbles me and introduces another kind of empowerment: one that acknowledges that maybe I can do anything…just not on my own.

I titled this post The Witch of Endo, part I The “part I” is a promise to myself. I will keep writing about this. I will keep needing, too.

Thanks for your help. I appreciate it. I couldn’t do this without you.

The Vodou that I do.

Recently, a friend at a party asked me what, exactly, it is that I do as a Vodou priestess. I was silent for a moment, then launched into an explanation heavy on the giving-of-counsel–regardless-of-faith and general hand-holding, as if I am primarily an unpaid social worker who just happens to keep a lot of rum and candles around the house.

I find myself doing this a lot—the secular priestess act. I can’t lay the blame on cautious representation of the Vodou taboo to the fearful. I have to admit it: this is just how I am. My intellect tends to overpower my good sense, and I then suddenly it’s like I’m behind a podium. I reduce my religion to historical context and social components. The answer I should have given—the answer my friend deserved—is very simple. As a Vodou priestess, I serve the Spirits, and I serve the community.

So what the hell does that mean? Well, let me tell you, it varies. Lately, it’s kind of sucked. Here’s why.

My surgery was less than a week after the earthquake and I was furious that I had to stop what I was doing; I mean, surgery always makes me furious that I have to stop what I’m doing, but come on!  This is life or death for thousands of people. I’m busy fundraising here. I kept thinking: please let me continue to help somehow.

I got what I asked for. Lucky me. Stupid me!

I've had a good number of surgeries in the last 8 years; but that is a post for another day. What’s relevant here is that while under anesthesia, I occasionally meet the nearly or newly dead; it’s not usually a big deal, they show me stuff, or talk for a bit & then drift off. It’s always peaceful: misty and bright in a based-on-a-true-story, I-saw-an-angel, spiritual porn kind of way.

This is not what happens when I go in for the latest surgery —this is hardcore. Countless people are begging me to bring them, or their loved ones, to the hospital I am in. There are many crying out in helplessness agony, begging to be rescued from under the rubble. They don’t realize they are dead at first; I think many are dying as they speak to me. Later, I wonder, how did these souls find me here, so many hundreds of miles away from where they lay dying? I imagine a big blinking arrow on a Google map in the Ether: “Manbo Here.” I guess distance is only a physical concern. But right now, these are not my thoughts. I am here. I do my best to reassure them, hold their hands, send them on. Once they realize they are dead, most become very peaceful and drift off, but some still want me to help their families. They are desperate.

This is not frightening; I do feel beleaguered, like the only airline employee at an airport in a war zone, where nobody knows how to get to their flights but everybody knows they’re late.

Things are getting hazy. I see some people join their loved ones. A woman gives a cry of fierce joy and swings a lanky boy into her arms. I smile before I remember. He’s here because he’s dead.

Waking up post-op is always pretty disorienting. Recovery from surgery is always a little rough, often leaving both Urban & me emotionally ragged. This has been a tough one. I’m moody, whiny, angry. I feel the Dead hovering just out of the range of my vision; as I drift off to sleep, as I wake up, as I pass though moments of transition, they come forward. They are not all polite. I feel wrenching sympathy for them, but sometimes I want them to leave me alone for a bit. Narcotics withdrawal is enough on its own just now, thanks. There are times I feel totally overwhelmed, clueless and wretchedly unworthy. I fumble around in the blur of my own life; as lost as anyone. How am I supposed to help these souls find their way? I feel selfish and tired and my stomach hurts and I yell at Urban.

I remember going into initiation last year and being told: if you are doing this to make your life easier, leave now! This will make your life harder, but truer. I remember nodding and smiling and thinking I knew what that meant. I realize now, we never know what a vow meant when we take it. That’s why you have to make vows—duh, so when the challenge of reality exceeds your imagination, you don’t scarper. When your heart breaks, your conscience keeps beating. It can be as brutal as it sounds. You’ve had that moment of hesitation in a doorway, aching to leave but knowing you promised to stay.  Romantic imaginings (I’m going to be a Vodou priestess, how cool is THAT?) are a pale, pretty shadow of something greater. Beyond ideas of how it ought to be, there’s a genuine way of being. I feel an incredible outrushing of gratitude: for the Dead and the life they’ve had, the life I’m still living, and the trust they show in me. In their final moment it does not matter where I am or how I feel or if I’m worthy. I promised to serve. I’ll just have to work with what I’ve got.

I've done some brief ceremonies as I've recovered from my surgery. This Friday is Shivarathri, the festival for Shiva (yeah I’m Hindu too, by birth--that is definitely a topic for a different post). I will try to do some focused work over the weekend to help the Dead, as He's (kind of) the Hindu Gede, and my long-time patron.

My community in New Orleans has also been doing ceremonies for the Dead; every Vodou house I know is doing ceremonies to guide and honor them. They media has shared lovely pictures and footage of Christians singing and praying, but be assured there are also many, many people, both in Haiti and around the world, who are not Christian, or not only Christian, serving those in need, those who live and suffer and those who have passed to the next life. If you are one of the many who offered prayers for the Dead, your prayers were heard. They thank you.

So what, exactly, do I do as a Vodou priestess? It varies. Right now, I light candles, coax, pray, chant and sing the Dead on to Guinen, the homeland waiting under the Waters. I tell them they will not be forgotten, that now they are our memory, history, inspiration. They are our guides. In leading them home, I’ve found my way.

Comfort & Joy Division

I’m hanging out in the big dome room of my farm, listening to Joy Division and talking to a new Twitter friend about his day. He thanked me for my efforts to get help to his family in Haiti. His uncle is still buried under rubble, but they think he is alive. I feel a warm wave of pride, followed closely by a crushing sense of shame…what the hell did I do? I tweeted. I sent emails. I did stuff of Facebook. I donated. I asked others to donate. So little, in the face of so much.

I am overtaken by gloom; this is why I shouldn’t listen to Joy Division.

It feels wrong to go about my day. Everything I do feels acutely, embarrassingly, wrapped in privilege. I don’t feel well, so Urban brings dinner home; I think of people in Jacmel, traumatized and hungry, wondering when they will eat next. I wrestle yet another mangled rabbit away from the dogs and feel sick at the sight of the broken body. I take a painkiller and feel anxious about my surgery on Thursday; I think of people in Port au Prince sitting on the sidewalk waiting to have crushed limbs amputated.  Suddenly, I can’t take Ian Curtis moaning at me anymore, and shut off the music. I light my altar and think of the NYT article quoting a man holding his bleeding girlfriend in his arms and saying “Bless us, oh Lord, but please send a doctor to plug the hole in my beloved’s head.”

As I watch the candles flicker, my guilt intensifies, peaks, falls away. I feel something else. An emptiness and peace, a thankfulness for my comfort, for the universal ritual of light. I feel empathy—wait, it’s not what you think. I feel empathy for myself. I realize that I can only find myself where I am; I can only live the life I am given. I’m not in Haiti. I can’t trade my comfort for another’s suffering. I’ve given what I can and I’ll keep giving, as I can. If I could share my dinner, my Darvocet, my comfy couch, they’d already be in a shipping container. If I could donate my surgeon, operating room and health insurance, I would.

All I can share is what can be given. Right now it’s a moment: my awareness and the light of Spirit. To the people of Haiti, know this: Legba of the crossroads is with you. Ganesh who overcomes obstacles is helping you. Fierce Dantor looks over you. Mother Ayizan walks among you. Ezili weeps for you. Ogun the warrior stands guard and works though the hand of the surgeon. Jesus, most gentle, is with you. Simbi moves as a river of compassion and communication, pouring the message across the world: Haiti! Haiti! Haiti!  Gede is there, immense and compassionate, taking the dead in his arms. They party with him tonight; rum and laughter flow freely beneath the Waters. You see these Spirits, these ways of being human, in the faces of the aid workers, your neighbors, family, children, yourselves. They are you, Haiti, and they are me. I am there, my brothers and sisters, in every one of you, in every way I know how.

I turn the music back on, sit in candlelight. And let it myself be what I am.