Thursday, August 31, 2017

6 years!

I celebrated my immune system's 6th birthday on the 26th! I finished with the trial last year, so no followup in Chicago this time. Dr. Burt wouldn't use the word cure when I last saw him, but did say that he doesn't expect me to have to worry about Crohn's again. That sounds like a lot of words for "cure," to me. I'm still symptom and medication free and, considering how much better the rest of my health has gotten over the last year, I'm not concerned about pursuing any testing.

I read one of the most empowering books I've ever read a few months ago called You are the Placebo, by Dr. Joe Dispenza, which helped me to understand and explore an aspect of my stem cell transplant that I tried to write about after my two year followup but I couldn't figure out. The book explores the placebo effect and how your past memories, states of being, thoughts, feelings, attitudes, beliefs, and perceptions interrelate to influence your health.

These ideas helped me recognized that, even during the worst parts of Crohn's during my teenage years, a small part of me maintained the belief that I would eventually be healthy, and not too far along into my life. I of course had no idea how this might happen at the time. It felt as if there was a block on my mind that kept me from imagining too far into my future. I remember daydreaming and finding it believable that I could become healthy and figure out how to trick someone into entering a relationship with me, which would give me the opportunity to explore the intimacy and love I was lacking (which happened). I didn't consciously imagine a lifetime of suffering, though part of me implicitly knew that's what was in store if something didn't come along to heal me, as is customary with an incurable, chronic illness. Amidst my daydreams and fantasies of my own demise that regularly accompanied dissociation from my pain and misery in hopes that something would remove me from that suffering, the blockage of imagining a prolonged, suffering-filled existence too far into the future allowed a more open space for me to imagine the possibility of becoming healthy. While I still have no idea how reality actually works, it is completely clear to me now that things are more likely to happen if you believe they are possible and things are less likely to happen if you believe they're impossible. These beliefs would not have taken root had I not sufficiently entertained them.

My belief in this stem cell transplant was amplified by seeing the promising results of the trials. It seemed too good to be true. I got as carried away as I could with the idea of a stem cell transplant fully restoring my health. I was all in. The two most likely outcomes, in my mind, were achieving a very high level of health or dying, both of which, at the time, were preferable to my dance with Crohn's. Still having a strong preference between health and death, I spent much more time imagining what I might get to do when I became healthy. The death option didn't evoke further potential imagining because I didn't understand death yet, which spared my attention for more productive, life-affirming uses.

Despite being allergic to one of the chemotherapies, I had pretty much an ideal transplant. Other patients I talked with generally didn't tolerate the chemo as well as I did and had other issues pop up. I fully believed the stem cell transplant would make it so Crohn's wouldn't be a problem for me again. Dr. Burt was even updating to a new protocol with the intent of getting even longer remission for patients which only fueled my fantasy of being fully healthy and never having to deal with Crohn's again. The fantasy, as I best understand it, was ultimately comprised of the past memories, thoughts, feelings, states of being, attitudes, beliefs, and perceptions that Dispenza explores. My memories of childhood before Crohn's helped me to recall that being healthy is possible in my life. These memories connected me with thoughts about living life as a healthy person, and what it might feel like. Through these thoughts and feelings my imagination had the capacity to take me beyond my typical state of being, which was rooted in fear and despair, and entertain a more peaceful, healed existence. While it feels impossible to quantify, I am left to suppose that these aspects planted and nurtured the tiny seeds that would grow quietly in parts of me that blossomed into an attitude of perseverance, that things would work out, which came with the optimistic belief that I would be healthy. Having a semblance of connection with this belief, seemingly enough to keep it functional, let me be open to perceiving the ways that life could orchestrate such a grand recovery for me if I was able to be open to it and work towards it.

Having this knowledge of how the mind works, and my personal encounters with its dynamics, I am left being very cautious about how to optimally view my health. How would I consciously balance a grim prognosis of illness, and what we've learned about health and medicine, with the knowledge that I am likely to be healthier with a mindset which involves not believing that a terminal diagnosis means I will likely be unhealthy and die? How much do I choose to believe in myself versus a very real seeming medical diagnosis, with potentially millions, billions, or trillions of dollars of industry and research behind it? Given my experience with a previous doctor saying that I don't need a stem cell transplant and that my Crohn's was all in my head, and my experience with mainstream mental healthcare proposing ideas that were off the mark of the roots of my problems, I'm uncomfortably familiar with the need to reject ideas that don't ring true or seem like they will serve me well, even if they come from an authority figure with years of knowledge and experience. If I crumbled to my doctor and went with his assertion that I didn't need a stem cell transplant and it was all in my head, I would not be as healthy as I am today. If I never saw through the wild goose chase the Western approach to mental health sent me on, I would not have secured my scant grip on reality, and probably be medicated, thrown into a psychiatric hospital, or dead.

The farthest I've figured to take this so far is to hold conflicting viewpoints as holding essential elements of truth. I might be afflicted with an illness that comes with a set of constraints that I have to honor to restore my health, but I would temper any pessimism or fears of fatality, and rely more heavily on nurturing empowering, optimistic beliefs. Just because there "isn't a cure" for something yet doesn't mean it's a good idea to assume you won't be cured. There is a certain degree of value to installing productive, life-affirming beliefs regardless of how true or believable they may seem at the time. This flirts with questioning the validity of science and medicine, which can be terrifying to confront, especially from a vulnerable-feeling position of illness, but it's also freeing if you go through the process. Questioning what ideas you accept as reality and the beliefs you permit to function in your subconscious is a birthplace for harnessing power and control over your health. No matter how impressive their lab coat is or their credentials are, be wary of buying ideas from anyone who seems overly certain of how reality actually works, especially when the ideas are unfavorable to your life. There's no substitute in the world for your intuition based on direct lived experience.

Where I would be without having spent a period of life physically healthy for comparison. Where would I be if the rest of my mental structure was steering me away from health because I lacked appropriate mental inputs for believing I could achieve health? I'm not sure yet what advice I would give to another person about all of this, but I know what I'd do. If I were to get sick, you would find me stacking the deck in my favor; leveraging my mind as much as possible, imagining pathways that lead me to health, and taking every step along those pathways I could to strengthen my body and supply what it needs to heal. I now view medical professionals as people who are well intentioned, hopefully will be helpful, potentially incompetent and having blindspots, and ultimately capable of helping me figure out my health, even if I have to do work on my own. I am ultimately the one responsible for wringing out all of the life I have here.

I'm still in the process of exploring and understanding how my trauma relates to my experience with illness and health. I can't help but notice parallels between immune system and psyche. Something compelled my immune system to identify my body as a threat and attack it. In a similar way, my childhood trauma installed negative beliefs about myself and the world that would generate negative thoughts and feelings, unhelpfully attacking my mind (hello, inner critic!), causing more damage the longer this went unchecked. This also left me susceptible to other threats (unhealthy relationships, tolerating unhealthy behavior, abandoning my own needs, taking responsibility for others' emotions, to name a few), in a psychoemotionally weakened, boundary-broken state. In a similar way, my body was more prone to getting sick and other ailments due to an immune system preoccupied with attacking itself, on top of the disruption from steroids and immunosuppressants. Destroying my immune system with chemo to reset it did the trick for my immune system, but I haven't had the same kind of psychoemotional reset. I think psychedelics hold promise for achieving something like this, which I can hopefully speak to from personal experience in the near future. In lieu of that, a guerrilla warfare style of healing has moved me along my path to mental health. Meditation, yoga, therapy, writing, dance, intimate relationships, nutrition, exercise, marijuana, studying trauma, psychology, spirituality, and other tools have provided guidance for identifying and uninstalling the negative beliefs that still haunt me from the past. The good news is, there's no shortage of replacement ideas and beliefs to try on to see if they will help me get to where I'm interested in taking my health and my life.

I intend to explore and share more as I glean more understanding of these disorienting experiences that I can put into (hopefully) coherent words. I know there's still much more to uncover, and I'm extremely grateful to have the physical and mental health to put these puzzle pieces together.

4 comments:

  1. Awesome Dude! As it has been said, The medical profession has a license to kill. We must always do our own research to find the truth to health. Unfortunately, MONEY is probably the problem of why they do not give us the truth. They lie to us to pad their pockets. Follow the money. Great retrospect buddy!

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  2. <3 <3 <3

    I am an awe of your strength! Thank you for sharing :)

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