Rage

Oregon is beautiful and I am staying with sweet friends in Hood River, an hour outside of Portland. I am in a warm, bright, cozy little loft next to their house, and I am happy to see their faces when we cross paths at night. They are gentle, loving people. I also have the time and privacy to reflect and sleep well and take walks. It is cold and rainy every day and it is dark at night, without city lights to turn the sky pink. Sometimes when I am in the woods, I remember quiet.

I am also something of a mess right now; a mess that doesn't match my lovely surroundings. I started to say to someone the other day that life just sucks right now, but then I realized it is more accurate to say that I just suck right now. I feel like I should be reveling in the nature here, and the rest of this time away from work. But I'm not. I haven’t been outside much in the last two weeks since the biopsy under anesthesia. I went into the procedure with a sinus infection, and woke up with a chest infection (they say it’s normal to inhale snot under that kind of sedation, so the infection in my sinuses moved into my chest). I’m on antibiotics but they don’t seem to be helping much. I also came out of it with a thrombosed (punctured/swollen) vein where they inserted the fluids and sedation, so my left arm is swollen like a heroin addict and hurts like a mother fucker because there are blood clots in it. The anesthesiologist also said that some of the fluid sedation may have leaked through my punctured vein into my arm tissue, and is slowly releasing itself into my body over days, which could be why I'm so grim and tired. Or maybe I’ve been low because it keeps raining, or maybe it’s the insulinoma/low blood sugar deal, or just because I’m not exercising enough.

Or maybe I feel low because I have a decision to make that feels impossible to me, and that I have yet to feel a sense of clarity or agency in relation to. 

Here’s what was learned from the surgical test. First is that the tumor is confirmed to be what they thought it was, an insulinoma or insulin-producing neuro-endocrine tumor on the pancreas. It is almost certainly not cancerous or malignant. Insulinomas are benign 95% of the time. It is less than a centimeter in size, and is a “perfect circle” (which is unusual and strangely pleasing to me for some reason). It was also confirmed that there are no other tumors on my pancreas or surrounding organs, which is incredibly good.

I also learned that the physical symptoms I’ve been experiencing are directly caused by the insulinoma. Now that that diagnosis is confirmed by the biopsy, they are willing to say that all of these things perfectly fit the bill. I’ve been told that surgical removal of an insulinoma creates insulin-related symptom relief in all cases when a procedure is successful.

What makes the decision difficult, is the fact that I have been told that the most likely type of surgery I will have is a procedure that removes a large part of my pancreas and all of my spleen. And this is not something that I want. The loss of large parts or the whole of these organs holds the potential for life-long consequences that are as difficult, or more difficult, than what I'm experiencing now. So maybe needless to say, I don’t want to lose them.

I am definitely tired of feeling this way. But not sure if I’m tired enough to risk doing something that could make me feel worse. I don’t want to feel worse in my body than I do now. And in a case like this, where an answer isn't clear, I have only ever had success with relying on something like an internal compass. A feeling of intuition, or rightness, inexplicable lightness, or a sense of feeling one possible scenario as home. I am searching for that internal sense of direction. But I don't feel it. I just feel stillness. I feel no clarity about how to proceed. I can't seem to find that feeling.

~

I started period of silent meditation a few days ago, in the hope of finding it. And I’d like to report that I am rising with the sun and meditating three times a day and taking long walks and journaling and doing yoga and writing creatively and generally making the way open for clarity to appear. But that is not what’s happening. AT ALL. I am more like wasting an endless number of hours watching The Young Turks while occasionally eye-balling my spreading thigh fat, and marveling at the xenophobia and fascism that have sprung up among my countrymen in the short time that I’ve been residing in the rural mountains. I’m eating a lot of snacks. I am also spending a seemingly endless number of hours raging over my entire life’s history of relationships with doctors. People I’ve gone to for help in the past only to have them pat me on the head and say “you’re a smart, sensitive young woman and nothing is wrong with you," for months or years until they finally TEST me for what I came in concerned about, and find that it was indeed the problem.

Like with this insulinoma. I was concerned about my blood sugar crashes three years ago, and with blood sugar test results in the 30s and 40s (super low) from as far back as 2012, I asked for help. But no doctor bothered to explore it until I pressured them to this summer. Or like with the brain tumor I was finally diagnosed with at 21, which I went to the doctor about for a whole year prior, explaining that I felt there was a tumor there (I was too young to know that you have to pretend to not know things about your own body, and let them think they figured it out for you). For a whole year they told me I was "stressed out" and "having migraines" until I had a big enough seizure for them to give me an MRI and they found it. Or like the parasite I had for nine months—NINE MONTHS—ten years ago, after I went swimming in a lake in Tennessee and swallowed a bunch of water. For nine months I had diarrhea, and lost pounds until I looked like a walking skeleton. Each time I went in asking for help, they told me I “must be stressed” and that I should “eat some bread” to settle my stomach. When I finally couldn’t stop vomiting one night after NINE MONTHS of this, a doctor on-call finally ordered a simple stool test, and found two water-borne parasites. They were gone after two days of antibiotics.

I know well that I am not the only woman who has been dismissed and disbelieved about her own body in the history of medical science. When women's awareness of our own bodies is somehow, for some reason, written off as sensitivity or imagination, an institution that is meant to support and aid people becomes something of oppressor. Being told by an expert in a position of authority that you don't know your own body, and that you can't trust your own mind, is destructive. Western medicine has a long and impressive history of treating women as Invalid, as incapable of discernment. It also has a a sad history of using invasive technologies to control or cure women of things that they didn't ask to be cured of. (If you're confused, google Rosemary Kennedy.) There are echos of that paternalistic history that can be hard to shake off. And I seem to have enough rage about my own experience with these behaviors to fill an ocean. 

It sucks enough to be sick. It sucks even more to go looking for help, and have an expert tell you that you're wrong about your own being. I am furious about lifetime of experts telling me that I don't know my own body. Ten punches to the pillow for every time a doctor has ever said that I am a Sensitive Young Woman while I waited months or years for them to give me a fucking test that confirmed my feeling and let me get help. Ten punches for every person who ever looked at me and thought,“You don’t get to be the authority on you. Because of this white coat, this degree, this title, I get to be.” Fuck them all. 

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Another thing that I'm twisted up with rage about goes hand in hand with that medical mistrust of my ability to sense a problem. Which is the out-of-hand dismissal of my ability to participate in a problem's repair. Just like I know when my body is sick, I can also participate in helping my body heal. Whether or not we are in conscious relationship to it, we all have an awareness that can direct that process. That isn't acknowledged much by doctors, if at all. The idea of the mind/heart/soul's relationship to physical health is sometimes mentioned like a cheap plattitude ("Attitude is everything!") on posters in doctors' offices, and forgotten about otherwise. This subject is a whole other can of worms that I won’t open fully here, but it is something I am also REALLY ANGRY about. To me, participating in a healing process opens up a landscape as rich and potent as dreams. And it defies the popular idea that our only resources are external and must be paid for. Doctors don't have to foster that relationship, but they sure as shit should not discourage it. Because trust in ourselves, in our discernment, and in our life-force, is a resource that we need when recovering. 

I should pause here and be clear that the doctors here in Oregon are great. Not only are they wise and skillful and greatly respected, but they are also gentle, kind, and respectful of me. They are rare and smart people. But even in the offices of the nicest doctors, there is an accepted transference of authority over a body. Which is difficult for me. Even though doctors are scientific experts on this system that I live in, I also want a doctor to see me as a consultable authority on myself. I want that awareness to be included in our conversation.

And I want some humility from doctors... an awareness of the limitation of their own knowledge. Like, instead of saying "There is no cure for X," try "We have not found a cure for X". Just that subtle distinction acknowledges that western medicine is not the only healing resource there is, and avoids imparting a sense of doom. Even saying, “If you don’t do what I say, you will only get worse,” is claiming too much prescience. If a doctor can rephrase that with, "In the patients I have seen" or "based on my experience", they succeed in relaying the information without intoning a prediction of somebody's future. Because that is not anyone's right. Words have a lot of power, and we can deeply, quickly and unconsciously internalize them when they're spoken by someone we respect as an expert.

I am not suggesting a doctor withholds information. Statistics are incredibly valuable in decision-making. But they are not a prediction of an individual's reality. Saying to someone "You have a 70% chance of dying from X" is lying. Percentages exist in a broad group of individuals. They don't play themselves out inside a single human body. What would be true to say is "70% of people with this condition have died from it." Which leaves 30% of individuals who 100% did not die from it. Which leaves a person with a much more real hope and life-will. Both of which are needed in a difficult moment.

There is a part of me that wants to explain all of this to every doctor that I meet with nuanced, respectful patience. But behind that patience is something like a dragon that lives in and remains fiercely awake to the wordless vastness beyond numbers, and growls “Tell me one more time how I am not a miracle, and I will sink my teeth into your face.”

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I mentioned earlier that I had a brain tumor when I was 21. It was deep and in a difficult location to operate on. I was having seizures and a bunch of other unpleasant symptoms that I won't talk about if you ask me, because it is viscerally unpleasant to remember. Not only did doctors not believe me when I told them that I had it for a year, but they also told me once they found it that things would definitely "just get worse" if I didn't have medical intervention. But I didn't choose to do that. Instead of having immediate surgery, I found a neurosurgeon who would support me in taking some time. He was the head of neurosurgery at Cornell University in New York, and he gave me MRIs every three months over two years, which showed the tumor growing, slowing in it’s growth, stopping growing, and then getting smaller and smaller until it healed. I didn't undergo surgery or chemo or radiation. Someday I will talk more about that experience of getting well. Right now, all that I'll say is that it happened. Which does not mean I controlled it, or that I knew what the outcome would be. I didn’t. But I participated. And I drew upon things that were not accounted for when a guy in a white coat told me that if I didn't have surgery, I would "just get worse."

I understand the human compulsion to measure and quantify things. And I recognize the lack of ease people have around acknowledging things that are real but not explainable. In an attempt to categorize my experience of healing from the brain tumor, the few people that I've told about it have projected various things onto that experience, from saying that I “prayed the tumor away” or “willed it away” or “thought myself well” to “it must have never really been there in the first place”. But none of those things are it. The tumor was there, and it went away, and I got to participate. I learned things during that time that changed the rest of my life. I learned about asking, listening and trusting, and about joy as a compass and the inevitability of overwhelming gratitude for life when I am paying attention, which feels like healing, regardless of how the body goes. I learned about giving over, and being willing to experience something that I couldn't intellectually understand, and would never be able to explain. I agreed to the loneliness of that. I learned about the discipline it took to take my own healing as a subject, and to give it time, energy and attention that might have gone to other subjects in my early 20s. I learned about the truth available in dreams, stories, and waking experiences. I learned about trusting my life. And I learned about the opposite of lonliness; a kind of always with-ness that is a disembodied love in abundance everywhere, which I only occasionally find my way to feel. 

Right now, I’d be glad to have back my relationship to some of those things. Right now, as I was saying to begin with, all of that feels far away. And I know that I need it to get through this time, no matter what I decide to do. For all the importance I've been giving to this relationship with trusting oneself, I don't even feel like I can find me right now. I wish I didn't feel disconnected, lost, angry, unsure about what to do, and far from home. But I do. 

So, all this is just to say that I don’t have a decision, I am a muddle of hard feelings, am processing a bunch of anger, am coughing so much that I can't sleep, and distracting myself by watching lots of Donald Trump videos. Probably because his popularity is alarming enough to distract me from my own mental tangle for periods of time.

The other night though, after being lost for hours to some ridiculous marathon of watching him blab like an over-confident child, I found myself all at once sitting in a different part of the room, away from my computer and on the corner of my bed, my hand smoothing my hair across my forehead like a mother. And I heard my voice say out loud to me, “Oh I see. You are scared. No wonder you are trying to hide. No wonder.” And even as I write this, I am beginning to consider that maybe, being with myself and aware of my feelings, involves joining myself right where I am, instead of expecting some profound and resonant clarity. Maybe I join myself in this fear, this confusion, this anger, and I am with myself.