I have to say something about the history of this domain or it will haunt me. I launched it once before, in 2008. The circumstances were so bizarre & traumatizing that despite the passage of so much time, it’s been difficult to tell the story. For 12 years it’s stood as an irredeemably horrific experience. Finally, in 2020, I have found the first upside to it: it’s made COVID-19 isolation seem not so terrible in comparison to what I went through then. That’s honestly something I’m glad to feel and to be able to convey to my kids and others. Do not take this to mean I believe everything happens for a reason. I do not.
Originally, I picked up the domain because I thought the idea of a petition to repeal Murphy’s Law was hilarious. My original plan was to have a funny site, a place to defuse frustration when Murphy’s Law took hold. I also hoped to raise awareness and perhaps money for some good cause, something to do with advocacy around women’s health care, probably autoimmune issues. I had even approached a friend about doing some funny artwork to go with the slogan on things like mugs and t-shirts.
Then the shit hit the fan.
The short version is that I got really, really sick. I developed a dental infection that went systemic and remained undetected by dentists and doctors alike. My health was exponentially worsened by the treatment I received, which included complex extractions of several rear molars followed by a bone graft being poured into my jaw. I was told this was to preserve its shape, and with it, the option of implants in the future. The thus-trapped infection literally took me down and my body attacked the bone graft with everything it had.
Because of some previous deeply weird medical stuff that had happened, my educational & work history, & the fact that I’m damn smart (no false modesty here), I figured out the gist of what was happening fairly quickly. My blood work did not show the usual clinical markers for infection and local doctors threw up their hands. Eventually (we’ll come back to this) I connected with an incredible doctor who validated my understanding of what was going on. After multiple antibiotics, narcotic pain relief, prescription-strength NSAIDs, a short tapering course of prednisone to confirm my immune system’s assault on the graft, and the removal of the graft itself, I found myself on the road to recovery.
About that “eventually”: it was not days or even weeks – it was months. Months during which I was desperately ill, in increasing agony, bedridden, and virtually alone. My description of the pain in my mouth was that it was like radioactive barbed wire kryptonite. Even eating or talking was excruciating. The tremors and shocks that constituted my body’s assault on the graft I described as feeling like restless leg syndrome, times 100, & through my entire body. And that’s all I want to say about that, except that it was hell on earth and brought me quite close to death.
The doctor who saved me was here in Toronto, which is not where I was living at the time. I was living in a small city – the only time in my life that I ever did, or ever will do, that. Eventually I came to understand that a house of cards had built up around me wherein everybody decided it seemed more likely that I was crazy (that’s almost a verbatim note from an ER visit), nobody thought to tell me this, and everybody urged everybody else to simply ignore my frantic pleas. Because that’s what they do there to treat mental health issues, apparently. That’s a story for a different day.
If I had not had the knowledge, means, & will to escape to Toronto, I truly believe I’d be dead. But I made it there, with the medical records I instinctively collected from everyone who had (mis)treated me. I discovered falsehood after falsehood and the extent of the house of cards as well as the danger to me if I were to return home. Learning all this broke my heart, but saved my life.
Because this took place over the summer, the doctor who was treating me and virtually all of his colleagues were away for weeks between the time my infection was treated and the graft removed. I spent that time becoming weaker and weaker in a hotel room. Quite literally afraid I would die, I launched this site and posted about a half dozen entries consisting entirely of the email correspondence between the good doctor and me. That was the closest thing I had to valid medical documentation. I had no strength to do anything else. My hope was that if I died, those posts might provide some insight into what had happened and ideally provoke an inquest and some changes. At the very least, I hoped it would help my kids learn the truth when they were older. Fortunately they learned it directly from me later and we are very close, which is my greatest joy.
You already know there was a happy ending. It took a very long time though. The consequences of having let the problems fester so long were significant. Physically, the worst part was the vertigo every single evening. It was only on my left side, where the graft had been dug out of my jaw. That side felt like I was on a sailboat in a storm on the Pacific Ocean. It was so disorienting that I often wondered if it wouldn’t be less so to have it on both sides. It was a solid couple of years before it subsided, though in the interim I happened on an unusual and very effective way to moderate it. That’s also a story for another day.
In the course of this experience, I lost almost everything I valued. When I was on the mend, I set out to replace what was important: people to love and be loved by, people who had my back as I had theirs. That was, and still largely is, how I measured success. I found my tribe, and among them, people who have been family of choice for a decade now.
I’m not going to name any of the people who let me down. Part of what’s made it so difficult to talk about this is the question of family members, as in where were mine. I’ll only say that with one exception – a kindness extended from afar that meant everything – they weren’t there, and that the shame that caused me, I now realize, was misplaced. Beyond that, I’d like to preserve my privacy and more importantly, my kids’. I’ve made peace with some family members, including my mother and my late father. I fired some friends. Am I well healed, psychically speaking? Hell no. The experience broke me in ways that may never heal. Beforehand, I spent much of my personal and professional life advocating in health care on both individual and systemic levels, so much so that I was actually awarded a medal back in the 90s: the Commemorative Medal for Canada 125, given “in recognition of outstanding community service & work to improve the quality of life in the community”. Virtually all my life I’ve been fearless – the first to stand up and fight for anyone in need. But the experience of advocating for myself was, in a word, horrific. There were many times I almost gave up. Only the thought of a friend, a mom like me, who had died for lack of seeking timely health care, kept me going in the darkest moments. I am not that fearless warrior any more though.
Understand though that I am not what anyone would call a snowflake. For example, like virtually every woman of my generation, I’ve experienced a boatload of sexual misconduct – countless microaggressions and some not at all micro. I am not triggered by discussion about that or any other issue with similar impact and relevance. But this article by Maya Dusenbery about how women are so poorly served by the health care system made me curl into a ball, and a year after starting it I still have not been able to finish her book on the subject, Doing Harm. One thing that helps immensely is that I am fortunate to have a truly exceptional family doctor now. I have informed him that he needs to stay in practice for the next 30 years.
I do hope to unpack some more of the experience in ways that may help myself and others. I guess this is a start. For now, I want to move on to talk about other things.
I have to mention just one more aspect of this experience, a terrible thing, yet one that has helped some old wounds begin to heal. There was one family member to whom I turned almost immediately after the graft, as soon as I began to understand something was terribly wrong. This was someone who could have easily helped me nip this thing in the bud, hold people to account, and prevent much of the cataclysmic fallout. To this day, I have no idea why this person very cruelly rebuffed my desperate appeal. It ate me up for a long time, as did the silence of so many others. Recently I have come to see that that person had more influence over those others than I knew, and that they played fast and loose with the truth.
This family member has gone through some tragic circumstances of their own in recent years. I feel great empathy and have expressed this to them. That empathy has not been reciprocated. This person has gone on to significantly harm other family members, and has posted egregious lies online about several of us. While it’s been a nightmare to deal with all of that, it’s allowed me to let go of the toxic belief that their actions toward me were somehow personal. I won’t name them or dignify their writing with a response. I hope they find peace.