ADVANCE WARNING – This post will be more personal than poetic … more raw than polished. Although a metaphor (or two) might end up weaving its way into the words, this will be accidental rather than intentional. It will be full on rambling narrative and will probably be devoid of any kind of literary structure. There may or may not be wisdom revealed and there may or may not be themes that emerge. We shall see. This post is for me. It is for me to start making sense of everything that has happened over the past few months. I’m sharing here because it will help solidify my thinking and because it’s possible that someone out there will be able to relate and ultimately benefit from my somewhat unhinged freeform musings. I have foreshadowed that this “part 1” as there might be more to come. There usually is. This instalment will cover the events that led up to my decision to take a leave from work.
But where? The story has no identifiable beginning … no crystal clear moment in time that can be used as a starting point. So I guess I’ll begin with the diagnosis … a diagnosis with multiple threads that can be followed into the nebulous web of the past as well as threads that will undoubtedly form part of the tapestry of what is yet to come.
I was diagnosed with an autoimmune condition in early December. Yes … that sounds super frustratingly vague to me too. People have asked me “what kind of autoimmune condition?” and I have no answer for them because I’ve been given no answer myself. I think that’s about as good as I’m going to get. As I’ve begun to wrap my head around it all and have begun to poll the “experts” (those with lived experience and those with theoretical knowledge), I have come to understand that this underlying autoimmune dysfunction is creating secondary conditions that have actual names. Names like psoriasis and panulcerative colitis. I have come to understand that there may be more names to add to that list … especially if I don’t start to take things seriously and do something about it.
I have learned that once you have triggered an autoimmune condition you will have it for the rest of your life. It is a disease “in which your immune system mistakenly attacks your body. The immune system normally guards against germs like bacteria and viruses. When it senses these foreign invaders, it sends out an army of fighter cells to attack them. Normally, the immune system can tell the difference between foreign cells and your own cells. In an autoimmune disease, the immune system mistakes part of your body — like your joints or skin — as foreign. It releases proteins called autoantibodies that attack healthy cells” (healthline.com). Your focus post-diagnosis becomes one of symptom management rather than achieving a cure. The goal is to create conditions within the body that encourage periods of remission. That is my mission right now. It has taken me a while to get here.
Over the past several months, my health has been compromised in a variety of ways that I kept well hidden from pretty much everyone … most determinedly from myself. A little over a year and a half ago, my body stopped working entirely. One friday in october of 2017, I got home from work and collapsed on the couch and literally couldn’t move for the next 48 hours. I had never felt so weak. The low point was when I said to my partner that “I feel like life is leaving my body”. I have written about that before but (to recap), I didn’t mean to be dramatic and I didn’t mean to scare him. I was actually quite relieved to have words to explain how I was feeling. My partner was not relieved. He was terrified. He forced me to call my doctor and make an appointment for monday morning. He drove me there and made me promise to tell her what I had said to him. He threatened to tell her himself if I didn’t. My doctor was incredibly supportive and told me that she wanted me to take a leave from work RIGHT AWAY. I honestly didn’t have a choice so I did. For 2 whole weeks. It felt so dramatic at the time … such a huge decision.
But really? Looking back I realize how ridiculous I was to think that 2 weeks was even close to enough. It was enough to get me back on my feet so that I could keep doing everything I had always done. I even added new things into the mix to really over-compensate … challenging myself to do more than ever before.
Despite my incredibly active denial about the big picture, that leave did put me on the path towards recovery. It triggered my doctor to order a bunch of tests to try to get to the bottom of what was going on with me. Between october 2017 and november 2018, I went through a tonne of blood work and countless other tests. I went through cancer screening – skin, breast, colon. I saw specialists. I did (most of) what I was told … which is definitely a sign that my deepest intuition was trying to be heard over my stubborn creative brain that worked overtime to keep my favourite delusion intact … the delusion that I am invincible and that there are no limits to what I can do physically, mentally, and emotionally.
I was tired. Tired in my bones. I didn’t even recognize the person who would stare back at me on those rare occasions that I actually thought to look in the mirror. There were permanent black circles under my eyes and my body had puffed up with cortisol. There was no sparkle in my eyes. My skin looked dead. My limbs hung weak and my muscles had begun to waste away. I was malnourished and sleeping no more than 1-2 hours a night. I was living on potato chips because it seemed to be the only food my body could digest. And yet … and yet … I continued to work 50+ hours a week in an environment that was not at all conducive to creating / maintaining physical and emotional health. I continued to teach 4 evening yoga classes and to pick up the occasional sub class to help my teaching community. I went to spin classes and practiced yoga. I made a point to visit with my people and remained active in my roles as a partner and as a stepmom. I was doing everything and then some.
Until I couldn’t.
I went to see one of my specialists (a gastroenterologist) in early december. I was expecting her to order more tests as the last ones had disproved her original theory about what was going on. I walked into that appointment with my guard completely down. I was expecting no real news. I was wrong. Instead, she gave me news that would turn my world upside down. She told me that I had an autoimmune condition that had been confirmed by biopsies she had done earlier in the fall. She said I had something called panulcerative colitis and that I would have the condition for the rest of my life. She didn’t pause for even a second to register the look of shock on my face. In fact she didn’t make eye contact with me at all. She scribbled notes in my file without ever looking up from her desk. I was just the latest anonymous person on her conveyor belt. She wrote up a requisition for a chest xray that I had to do as soon as I left her office (to confirm I didn’t have TB?!?!? random?!), a blood work order that I had to complete that same day (10 vials), orders for several other tests, and two separate prescriptions. She asked if I understood. I shrugged my shoulders. That was the end. The whole appointment lasted less than 7 minutes before she ushered me out the door towards her receptionist who booked a follow-up appointment for me to see her again in 4 months.
Then I wandered into the abyss. Alone. In a state of shock. Blinking against the bright winter sun. Shallow breathing. Heart racing. Teetering on full fight or flight mode for the next several hours. I did most of the tests that day and I dropped off the prescriptions. I went through the motions and kept trying to push away the awareness that was tenaciously and relentlessly forcing its way to the surface of my conscious brain. An undeniable fact. The fact that I had done this to myself. I had done this to myself by pushing myself too hard for too long, by never giving myself time to slow down, by avoiding obvious signs that something was amiss, by accepting things that were truly unacceptable for far too long.
I stayed in denial for as long as I could. I kept doing what I had been doing and I pushed aside thoughts of what all this would really mean.
The haze finally lifted when I picked up my prescriptions. I listened numbly to the list of side effects that I could expect when taking the first drug … an old-school steroid that was supposed to fast-track my healing. It was when the pharmacist pulled out the second prescription that my brain screeched “no fucking way! that is NOT me!” It was a giant bottle of giant pills … pills that I would supposedly have to take 4 times a day for the rest of my life. I pictured that bottle on my countertop and I had a full melt down. That pill bottle had nothing to do with how I see myself. It represented everything I am not – old, weak, fragile. A victim. I knew instantly that was not how I was going to tackle this. I knew there had to be a different way. A better way. A more sustainable way than simply managing symptoms with pharmaceuticals. I knew in my heart that I had to find a way to come back to life and to tackle the source of the problem – my autoimmune health.
So … I booked an appointment with my doctor and my naturopath and they agreed. Medication is not the answer or at least does not have to be MY ANSWER. My doctor ordered me to take a leave so that I could get on top of this. After one final failed attempt to reorganize my work life so that I could tackle this without taking time off, I had to officially throw in the towel. With the support of my doctor and my family and my friends, I chose to take a leave.
That was January 1.
What came next will be dished out in the next instalment of AWoL … if I get around to writing it.