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. In Part IV I described my treatment successes as well as the fallout and negative consequences of my decision to leave my partner, my home, my state, my profession, and the Western medical industry behind. 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 V I will describe the actual responses I have received from friends and family regarding my situation which have been so inappropriate, unhelpful and physically and mentally draining that I have had no choice but to cut off all contact with almost everyone I know.
“Consume, conform, reproduce, obey” is a reference to the 1988 American science fiction film “They Live” which suggests that subliminal and other cultural messages essentially program people to behave in certain ways which benefit the state and for-profit corporations. Although the film was fictional, there is an excellent case to be made that it was also based on real life and the real experience of human beings existing under the brutal systems of capitalism and patriarchy. Here, we are expected to conform to society’s rules with an alleged “greater good” prioritized over the needs of the individual; to obey the mandates of our elite corporate and public overlords created by them to benefit themselves at our expense; to reproduce if we are able and to seek medical assistance to conceive if we cannot; and of course to consume as many products and services as possible which generates income for the most wealthy and powerful among us. Most able-bodied Western people do these things without thinking too deeply about them or they do it for as long as they physically and mentally can. But what happens when, due to a serious chronic and debilitating illness or injury, we are no longer able to conform or obey because our illnesses direct our lives? What happens when our ability to consume is hampered because we no longer have an income?
Here, in the face of serious and disabling illness or injury, the coercive reality of our station is writ large: the new role to which we will conform is that of a professional patient; we will consume medical goods and services whether we want to or not and whether they improve or further damage our health or not; and we will obey this mandate or, without means to supply ourselves with food, shelter or the necessities of life, we will be left to die. This is the foundation and essence of the disability-based benefits structure and it is very real indeed. As a seriously ill Crohn’s patient, this is my current (and likely future) station and I am furious about it. Recognizing my immense vulnerability as a disabled person I am also saddened that it has come to this, horrified that I will be unable to stop it, and terrified for my future.
I started having noticeable issues with gastrointestinal symptoms and food intolerances early in life, if you can call diet sodas and artificial sweeteners “food.” I was about 12 years old when NutraSweet went on the market. It became immensely popular and was used in the diet sodas and sugar-free candies and gums all my tween-aged friends were drinking, eating and chewing. Personally, I couldn’t stand the stuff. It made me nauseated and bloated and made my mouth water sickeningly. Over the years, other so-called sugar substitutes came to market and I tried them all, but every one of them made me sick. My grandmother’s Sweet n’ Low was clearly poison and I never touched it. As for reacting badly to actual real food, that didn’t start until later.
Firstly, I have to clearly state the following: this blog is not intended to constitute legal or medical advice. As an attorney and an American citizen, I have a First Amendment right to free speech, and I am exercising it here. These are my thoughts, experiences and perspectives meant for entertainment purposes only. If you are seeking legal advice, please contact the Bar Association of your state of residence and ask for a referral for your issue.
The last day of my life was sometime in February, 2013 the day before I was first diagnosed with Crohn’s disease, a progressive and incurable automimmune disease that targets the digestive tract. As many people with Crohn’s probably know, and as none of us is allowed to think or say out loud, your life is essentially over once you get a Crohn’s diagnosis. If not from the disease itself then from the treatments.