In Part I of this series, I described the mind- and body-shattering symptoms of Crohn’s disease, a crippling autoimmune disorder of the digestive tract that also causes systemic effects like joint pain, skin eruptions and fevers. In Part II, I describe the horror of Crohn’s treatment which apparently one has to actually experience in order to understand or empathize with. In Part III I described my escape from the Western medical industry — after 2 years of suffering with only more suffering to look forward to, and no relief in sight, I packed one suitcase and made a reservation at a vacation rental property in a cannabis-friendly state where I had planned to stay for 2 months and heal myself with medical cannabis. 3 years later, I am still here and facing a terrifying and uncertain future as a seriously chronically ill cannabis refugee. In these parts, I hope to show how desperate and hopeless a situation I was (and still am) in as a seriously chronically ill person who was not responding to conventional treatment. From there, I will let the reader surmise what would have been an appropriate response from friends and family and hope that they are able to provide that considered, appropriate response if one of their own friends or family members fall ill, and to understand that they themselves are unlikely to receive the same considered response under the same conditions and to be prepared. Being let down by the very people who are supposed to be there for you is a devastating blow.
In this Part IV I will describe the fallout of my decision to leave my partner, my home, my state, my profession, and the Western medical industry behind.
While I have gotten significant relief and healing after ditching Western medical poisons and treating with 3 years of medical cannabis and I consider this a hard-won and unlikely personal success, the relief I have found has come at a price. To wit, I have spent my life savings, liquidated my assets, maxed out and destroyed my credit, and pissed off and confused almost everyone I know with my decision to take my health and my future into my own hands. What they do not seem to understand, but which I understand all too well, is that there are some things that are probably worse than death. I spent 21 years witnessing and participating in the medical crises and treatment of a chronically ill sibling and I believe he killed himself in the end to escape it. Having experienced his medicalized hell right beside him, and having spoken with him about it at length, I cannot say with any certainly that his decision was a poor one. In his case, his “suicide” was accomplished when he volunteered for the risky and medically unnecessary final surgery that ultimately killed him — he was determined either to get better and create a life for himself outside the reach of his oppressive medical team or die trying. That our parents, a doctor and a nurse, were a part of his oppression and part of his “team” surely factored in his decision as he had no respite from what I have come to see as essentially institutionalized and medicalized abuse. He had nowhere to go and no one to care for him outside of a medicalized setting, even our family home, and he was never well enough to make a home for himself. A safe, sane and private home and life away from doctors and nurses is what he was hoping to be able to accomplish with the help of his surgeon who ended up killing him.
In my estimation, languishing in an emotional, physical and medical limbo of fighting with Medicaid to approve painful toxic conventional treatments that not only do not work at all, very much, or for very long but which actually make me feel worse and cause additional complications and side effects is one of those things that is probably worse than death, or at the very least I think anyone could reasonably be forgiven for thinking so. That is the situation in which I found myself, but even if conventional Crohn’s treatments were free and freely available I would never acquiesce to, let alone enthusiastically participate in them if they didn’t work and were only making things worse. I think some people just do not have it in them, in their DNA or elsewhere to be disempowered and victimized in this way and to acquiesce to what can rightly be seen as institutionalized ritual abuse without resisting it with every fiber, every cell, every last breath in their failing human bodies. Some people would willingly die first and I am one of those people. I do not expect anyone to understand that and most people in fact do not understand it.
When planning this trip to seek treatment with medical cannabis out of state I had the strong feeling that I would either end up dead or in jail and I could not afford to care — anything, literally anything would have been better than further enduring the relentless agony of un- and undertreated Crohn’s disease. I had to try. I could easily end up in jail for some kind of marijuana-related offense such as DWI/DUI or even trafficking if I tried to leave the state with my medication. I could end up dead in any number of ways, including a natural death from the progressive autoimmune disease that I really felt was killing me. When you strike out on your own with no familial or other support, death or jail is easily where any of us can end up and doing so with a failing body and tormented mind only increases the chances of a bad outcome. When I practiced benefits and anti poverty law, I saw that people who do not have financial, familial or other support often have run-ins with the law and that their chances only increased if they were chronically ill — if you can’t pay your rent and can’t or won’t leave when you are legally evicted you will be arrested. If you cannot control your behavior for any reason, including severe untreated or intractable pain, you might first be taken to the hospital, but once you are released where are you supposed to go? Homeless shelters do not have to take in poorly behaved (or medicated) residents and you can be arrested for panhandling, rough sleeping, suspected (or actual) prostitution, and even for using your medical cannabis on the street. I knew I was in a bad way whether I abandoned Western medicine or not and I chose to seek actual healing and real relief regardless of the outcome.
Naively, with regard to my health, I had assumed that I would either die or that I would improve enough to go on with my life in some way, even if it looked different than it did before, but I thought I would most likely die. I just did not think it was possible to live with such a painful and disabling condition long-term and I assumed that any such condition would eventually be fatal and it may yet. I did not anticipate that I would blow through every financial, emotional and other resource I had to improve “somewhat” and then have to figure out how to live into the foreseeable future with no money, no credit, no eligibility for benefits, and little or no ability to earn. But this is where I now find myself. While I have tried to “help myself” by starting a successful small business, and have been able to work under these conditions somewhat, I have been unable to keep up with the intensive and regular bookkeeping requirements including state, federal and sales tax filings which makes applying for need-based benefits impossible. The large gap in my medical records beginning when I abandoned Western medicine makes me ineligible for disability-based benefits. And federal housing benefits are not available for patients with medical cannabis certifications (and can have an 18-month or longer waitlist even for qualified applicants). Very shortly my bank accounts will have liens on them due to defaulting on out-of-state lodging and living expense-related credit card debt. I will not be able to access or transfer money even if I had any, and now I don’t — I have blown through my life savings and liquidated my meager assets which consisted of a single IRA deposit from my final year of employment and my car. Any income from my small business, even if I am well enough to work, will be frozen, no rent checks will be written, no groceries purchased on a debit card. I probably have several months to a year before my accounts are levied. I have enlisted the help of an attorney ex-colleague to review my situation and to double-check my work but I think this is more or less how this is going to play out for me, and that there will be little to nothing I can do to stop it.
At this time, I have no clear vision regarding how this will end, or what if anything I will be able to do to positively influence the outcome. Increasingly exhausted and traumatized from thinking about it, I have decided to take a week or 2 and create content for this blog which describes my experience and my current situation. At this point, I don’t know what else to do.
This concludes Part IV of this series, in which I hope to shed light on the serious financial, social and other fallout of Crohn’s disease and why it is not “just” a tummy ache, although tummy aches are bad enough aren’t they? Everything we need to live is in our “tummies” which this fast- and junk-food obsessed, yet poop- and fart-phobic culture downplays constantly as it is. If your tummy isn’t happy, you will not be happy, and when it goes on for a long time this is the very definition of serious, chronic illness.
In Part V I will describe the responses of friends and family members to my illness, my decision to take my treatment into my own hands, and the current dire financial straits in which I currently find myself as a chronically ill person who did not respond to conventional medical treatment. Friends and family members: take heed if you wish to be a positive force in a Crohn’s patient’s life instead of a nagging, dismissive asshole wholly ignorant of what Crohn’s treatment entails and how debilitating it is, and how the human body works and what it needs to survive, much less thrive. If it sounds like I’m a bit angry, it’s only because I am.