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Month: August 2023

Waiting Around to Get Sick and Die

Waiting Around to Get Sick and Die

At my first visit, my new rheumatologist asked some questions about my symptoms (I had none save the one time blue finger) and ordered additional labs. When all the results came back, I had a second appointment and the Dr. basically told me that I had markers of a possible, future autoimmune disease, but in the absence of symptoms, there was nothing to do but wait and see. I pressed her for solutions, things I could do to keep the odd in my favor — is there a diet I could follow? preventative meds or supplements? I am not a lazy woman, I explained to the doctor, I will do whatever it takes, just tell me what to do. I am, a doer after all.  But rheumatology doesn’t focus on disease prevention, it doesn’t know much about what causes the body to start attacking itself in the first place; a rheumatologist just writes prescriptions to manage symptoms once a disease has explicitly arisen.
I left the appointment thinking that the doctor, the entire field of rheumatology was crazy –everything has a cause, if I can do something now to prevent the cause of a diseased state, I can mitigate the result. Waiting and seeing seemed like crap medicine to me. I seriously didn’t want to just sit around waiting to get sick and die.
But then I thought about it more –isn’t my whole life just waiting around to get sick and die? Isn’t everything after birth just a distraction — circles we run in, while we sit in Death’s waiting room?   If this seems like a crazy approach to managing my health, how on earth do I find it an acceptable way to live my life?
And yet, it is inarguable that this little arrangement, birth into Death’s waiting room, was one I willingly embraced: Everyone already knows damn well this is part of the contract, exactly what we sign-up for.
I don’t want to wait and die– why be born?
I don’t want to be sick –why have a body?
I don’t want to suffer — duh, this is built into the fabric of the world, why entrap and tether myself to it?
The answer is, I think I can game the system. I think I can trade painful things I don’t like for awesome things I do, and somehow walk away net ahead. It’ll be worth it, I know.  I accept what I imagine will be brief hiccups of time I don’t like for periods when I can be happy. Or at least periods I imagine I will be happy. This is the siren song of hope. It is fueled by the sometimeses. By the belief that some trait or characteristic, the force of my will –I am a doer after all — will mean I get the last laugh.
But in the end, I can do, I can bring the force of my will,  knowledge, preparation, with me into that waiting room. And what does it really buy? Duration –either upping or lowering. A change in the details of the circumstance –either better, or worse. I can laugh and I can cry, but none of that changes the reality of the situation: I am just sitting around waiting to get sick and die. If this is unacceptable to me, I had best identify and mitigate the causes, otherwise, long or short, over and over I will wait and then I will die.
A Disease of the Body to Fit the Disease of the Mind

A Disease of the Body to Fit the Disease of the Mind

Waiting for more information from the doctors, waiting for a diagnosis, waiting for the symptoms of illness to set in, waiting to get sick and die, I got to thinking more about what exactly autoimmunity is and how it is an illness that fits my own brand of crazy…

What is autoimmunity — it is my own body attacking myself. It fits. It fits my personality. I am so harsh and unaccepting, of others, but especially of myself. It is part of my effort to curate who I am, to curate a world that I find acceptable to live in. I forcefully reject what is unacceptable in an effort to define not me, not how things should be. I use self control, and discipline, and self loathing, to force me to be more of what I want to be. Just look at my old gym routines and dieting, my extreme efforts to be a fit-not-fat-alana and you, I, can see just what kind of person I am.

I see my body as servant. There to do what I want. To be forced into the shape and function I think most reifies my belief of who I am/want to be. I am relentless. I don’t accept my body for what it is. I don’t accept the world for what it is. I pretend I don’t have to yield to this body. I think it is there for me. Of course it is attacking itself. Attacking the cells and tissues it sees as “not me”. That is exactly what I do. I live on the attack of things both inside and outside myself, when they don’t align with my limited views of who I and how the world should be.
Underlying all this is a deep misunderstanding of the world, of myself.  I believe there is something I can become, that there is something the world can become –some state of perfection that follows my definitions, my will. And if I can’t curate the whole world, at least I have power over what I claim, the things closest to me. My body. My people. My “personality” and desires and actions. Those, at a minimum, will be what I want them to be. I will whip them into shape. Whip them when they come out of line. Walk faster Eric, Walk faster.  I am, unaccepting of the world as it is. I am unaccepting of the things I call “mine”  being as they are, as being part of this world, following the worldly laws, instead of mine.
Why do I do this? On some level, I think my best lever for manifesting the world as I want it is through force. If I am soft it won’t change. Acceptance is soft, this is an arbitrary view, but still because of it I believe that if I accept then things will never change. I use harshness and lashing out as a mechanism to motivate myself to try and force change.
Even more fundamentally, I believe the world should be what I want, that is can be shaped, by me into a state I want, and held there indefinitely. The world being otherwise is unacceptable. It is a sign of failure. My own failure in cases where things are mine, and the failure of other when I perceive them to be involved in the generation of an unacceptable state.
The question is, how can a natural state of this world be unacceptable? It arose based on causes and conditions. It is unacceptable in my mind alone, the reality is that the world is exactly as it should be. I may be unaccepting, harsh, unyielding, always on the attack, but none of that changes what this world, what this body actually are. I am like an idiot who bangs their head against the wall in the hopes of knocking it down. For all my force, all I come away with is a headache, pain, suffering. I suffer because I can’t accept the world for what it is. I can’t accept by body for what it is. I look at and endless cycle of cause and effect, of flux and change, trying to figure out how exactly to ‘fix’ it. Forcing fixes, attacking what not broken. I have a disease of the body that fits my disease of the mind.
Death is a Symptom of Life

Death is a Symptom of Life

Suddenly, my finger turned blue, and with a momentary sting, a shock of color, my whole life changed. The pain was over in a flash. The fingers back to their normal pink within 2 days. But the Drs visit, and the subsequent lab work, uncovered abnormalities –markers of autoimmune disease — with a lingering effect. I was referred to a rheumatologist, and as I waited for my appointment with the specialist, I started down the google-rabbit-hole to try and self diagnose what may be going on.
Endless hours of research later, I was laying in bed, arms aching from the effort of my Googling, and I started thinking about a dhamma topic that I had taken-on as self assigned homework: Find daily examples of my suffering an trace it back to a cause.  Arms throbbing, I thought about the suffering of my physical pain , and as I considered the cause, the most obvious thing popped into my head. The cause of pain is having a body. If you have a body, you will always be subject to pain, you will inevitably encounter it. This was part of the fine print, the agreement I made: I so deeply desired a birth, a body, to play in the rupa world, and with that body I got the pain that goes with it.
I thought more about it, the pain, and I realized it was a symptom. The arm pain. The finger pain. The elevated autoimmune antibodies in my blood work. The itchy spots on my nose. The recent knee sprain. The old nagging hip injury. The suffocation of an asthma attack. The fatigue and wooziness of an allergic reaction. All these are just symptoms. So what was the disease? Birth is the disease, having a body is the cause.
After days of research on lupus and connective tissue disorder (which is what elevated autoantibodies, like what my labs showed, often indicate) I started thinking about birth, having a body –about my own body — in the same dry terms as all the medical journals I had been slogging through used:
Disease — Having my body:
Significant morbidity. Mortality – fatal 100% of the time.
Prognosis varies by patient, with symptoms often waxing and waning, with brief remission possible, relapse inevitable. Some have a relatively stable course of illness while others have sudden ,severe, outcomes and death.
Symptomology highly individualized. With the possibility of systemic illness and organ involvement.
Muscle atrophy . Dental involvement. Weakening eyesight. Decreased lung capacity and breathing difficulty.  Excessive weight gain. Skin discoloration. High urinary frequency. Susceptible to both bacterial and viral infection.
I just kept thinking about all the issues I, and others, experience and realized that being in this body is a disease. It is, in and of itself, a state that leads to what the medical establishment calls morbidity and mortality, aka. suffering and death.
Here I am, so anxious over the imaginary future of lupus: A future of decrepitude, where I can’t enjoy life and do all that I want. Of kidney and heart involvement, early death, painful medical tests and  high healthcare costs. Morbidity and mortality. So why wasn’t I this scared of birth? When this is exactly the same prognosis of being alive and in a body. What on earth made me sign that agreement, ok the the fine print  that inevitably insured  this outcome?
I remembered something I read in one of LP Thoon’s books — that we think all this is normal. I got to wondering how exactly we all normalize death and disease and pain and considered some of the blogs I had been reading of folks who had an autoimmune disease. One woman didn’t worry about tests, or blood markers, anymore, she just cared about symptoms. Another had positive labs for years before her diagnosis — with each passing day, she worried less and less about the labs, letting them sink to the back of her mind. Till , of course one day when got sick.  In retrospect, she said she was so happy to have ‘lived a normal life’, ignoring the sings of impending trouble, while she still could.
I am sure once upon a time, these women, like me now, were in the early phases. Just getting initial labs. Just figuring out what was going on. Freaking-out, trying to imagine a new diseased life, mourning he loss of the healthy life they imagined their future selves would have.  But they adjusted, adapted, integrated this new information into a new imagined identity and future. And voilà — the true terror of their own morbidity and motility — got dulled, eventually normalized by the new routines of their life, new limitations, new imagined future.
I suppose that is it. It is the same way I ignored the disease of life when I sought out birth. I focused on the good parts. I figured I could worry about the disease later, letting it sink to the back of my thoughts till boom — a blue finger. I had factored morbidity and mortality into the equation, but only abstractly, it was a future problem (though actually it is an every moment problem). Everyone faces it. Its inevitable. With each new pain, new symptom, I adjust. I normalize. I accept he disease. But should I? Mae Neecha once said to wait, I will see, that all there is in this life is suffering. Periods of more suffering and periods of less. now I am waiting, waiting around to break and die. Seeing that life looks pretty much like a text book disease, and I am beginning to see her point.
The Trap of Arbitrary

The Trap of Arbitrary

A note from present-day-alana (April, 2023):

In recent years, the concept of ‘arbitrariness’ has, over time, become a core point of contemplation in my practice. As I consider the idea of ‘identity’, where it arises from, and, ultimately its hollowness, considering arbitrariness has been a key tool for me. Afterall, if the characteristics we choose to build our uniqueness – our identity— from are just arbitrarily selected, could have been anything, THIS OR THAT depending on the circumstances, can we really claim that the identity we have built is inherent and absolute?

Is my identity really so damn special if I just choose characteristics arbitrarily, choose the meaning I assigned to them arbitrarily, and then arbitrarily claim I possess those characteristics and therefore I am a certain thing? What is arbitrary is just a random choice, a personal whim, it is meaningless. The identities we build –that seem so solid and important to us – could have just as easily been something else if the stars had aligned, if that is what we had selected, and curated, and convinced ourselves of. There is nothing so special about what we chose, what we believe ourselves to be. There is no significance to an arbitrarily constructed ‘alana’.

But, I am getting waaaaaayyyyy ahead of myself here. We will, I promise, in due time circle back…I offer this introduction only to highlight just how important, and nuanced, a tool ‘arbitrary’ has become for me, because this blog here is going to share one of my earliest, nascent considerations of the idea of arbitrariness.

It all started because I had sent a brief line to Mae Neecha, sharing a bit about my recent contemplation efforts on the 5 aggregates of clinging, and asking for a bit of clarification about #5, consciousness. Something Mae Neecha said in passing really got my wheels turning. She said:

“Basically, it is a process that relies on arbitrary permanence (choose A or B – there’s no real meaning) and then builds upon that uncertain foundation (well, last time you chose A so since you’re familiar with A, let’s choose A again… over and over until you “become” A)”.

Below are the contemplations spurred on by her comment:


On Mae Neecha’s point that the creation of self-starts with some arbitrary ‘choice’:

I was thinking it is like moving to SF. I moved, once I was there, I came to identify with it. It became me, me an SFer. When I left, I was devastated, losing a part of me. And in NY I hated it because it was so ‘not me’.

Birth in a body is much the same way, I end-up in a body, just as I ended up in the city of SF, and over time it becomes who I am. I am defined by the body, I imagine that it manifests me, that I have a specific future with it. The thought of leaving it is painful.

Of course, from my current perspective, it is hard to see the ‘choice’ that went into my body, but in other circumstances, the choice is more clear. For example, I shop for homes, I buy one with architecture, or location, that reflect me, my preferences, who I think I am. I choose features I think will bring me comfort. In the selection process I imagine a future with the home, a future I believe the home will bring about (note to self alana: this didn’t work too great with the Manhattan loft or the country home in Connecticut).

If you have the resources, you can pick a home, one you believe reflects you. One that conjures an imaginary future you like. Of course, with less resources, you have less choice. With a body, this is likely how a transgender person is born into a “home” they don’t see as reflecting them (trans folks are the perfect example of how the 4e body really doesn’t manifest our imagined version of our self –I have used the idea of being trans in several contemplations about if our body can ever really reflect our identity).

Of course, even in a case of less resources, the identity built, and the objects selected to reflect that identity, are still arbitrary. Based on old aggregates, which were also arbitrary. Like the study of kids broken up into blue and brown eyes and told blue eyed kids are inferior and brown eyed kids superior: Before the study, the physical trait existed, but there was no identity. But the identity was planted, and then the trait used to prove it. Just like with the beaver dam (you can read the beaver contemplation here): I am the one who chooses which trait to focus on. I am the one that assigns one meaning over another. It truly is arbitrary. Worse, I don’t just choose the trait, the rupa, to identify me with, I choose a particular state of rupa, 1 arrangement in the continual shifting of a form that is optimally me/mine. And when rupa shifts past that peak state, I am stressed and saddened.

I call something mine. Mine is in my mind and not the object: At KPY one time I saw a ladder with a post-it note that read, “Mine not yours”. The writer was claiming the ladder. But every reader, from their perspective, would read the ladder is “mine”. No where buried in the ingredients of the ladder is an extra element “mineness”. That exists in the mind alone. No 1 ladder acts fundamentally different than other ladders: It is, as all things, a product of causes and will continue for as long as the causes allow, and then it will cease. Sticky note and imagination aside, there is no special ladder.

Just like all bodies are made of the same elements, none is special. I just choose a specific set of traits, give them meaning, claim they identify me or reflect my identity and then I try and force the particular body I am in to reflect those traits. Or, I choose the traits because they already exist in the body I am in. On and on this cycle goes. Trying to use form to manifest self.

But that is not what from is. That isn’t what form does. How do I know? Because everyone can use this body, just like everyone can use that sticky-noted ladder. Every woman knows anyone can use our bodies at anytime; we grow-up with stern warnings about the dangers of walking alone at night, of leaving our drinks unattended at the bar, we live in fear of rape.  If this body is free for anyone to use, how do I claim it is something that will uniquely reflect me, my desires, my vison of who I am, my vison for my future?

If this body really manifested me, made my identity reified in form, then it wouldn’t change into states I despise. How do I reconcile a shift into aging, or ugliness, or smelliness, or sickness, or death, or post death decay, with a form that manifests me? Those aren’t traits or states I would claim. They are not how I see myself or what I imagine my future to be.

When my body, my objects, my traits -the As and Bs I have chosen – shift/decay/disappear, I am forced to adapt, to adjust, to accept; if I am the one needing to adjust to the objects (a little botox to bring that brow back to smoothness, a new car when the old one has broken down, devastating mourning over the lost ex and the quest for a new lover to fill the partner shaped hole in my heart) then can the objects really be proving anything about me other than my beliefs –my desire for them, the ignorance that I have that drives me to  continue to chase and cling to what shifts and slips away?

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