The Weirdest Luck and/or a Complicated Woman

Since recording this podcast I’ve struggled with what to write in this blog post. As you will have learned from listening to our conversation, I’m a very complicated woman. So where do I begin when I don’t even really know what’s going on? One thing that I never really mentioned but kind of becomes apparent throughout our conversation is that generally speaking, I have the weirdest luck. For one, I am living with a very rare and mysterious illness. Possibly even more than one. That many highly experienced and very intelligent doctors haven’t been able to figure out. So that's pretty weird. But these “what are the odds” scenarios extend far beyond my health and into all aspects of my life.

From a very young age I realized that there is something kind of funny about me. Aside from being slightly more sickly than my peers, by all appearances I seemed and still do seem quite “normal”.  But for those close to me it is obvious that my normalcy is somewhat of a facade as time and time again I find myself in these incredulous situations. Like, I once had my car stolen within hours of my car insurance expiring. I have been the first responder in emergency situations an unusual amount of times. I can always find a great parking spot, even in the busiest locations. I somewhat regularly find lost pets and children. I once clumsily dropped a bowl while trying to make dinner, which led to a small chip of ceramic flying across the room and hiding itself deep in my food. I later bit into it and cracked my tooth. That same food also gave me food poisoning which happened to kick  in while I was driving my car through a tunnel and unable to stop and pull over so I subsequently puked all over myself and my car. Seriously, WHAT ARE THE ODDS?!

These events happen to me so frequently that I forget how unusual my never ending comedy of errors actually is. Every now and then I have moments where I will casually mention something that has happened to me and jaws will literally drop. This was very much the case when recording this podcast. It was the first time I have ever gone into so much detail about my struggles with an unknown invisible disability to a group of strangers (albeit very kind and welcoming strangers) that were not medical professionals. I’m used to the strange looks of wonder and confusion from the students and doctors that I see when I try and tell them about my vast array of symptoms and complicated history of weird medical issues and to some extent i’m used to those responses from my peers who have been a great sense of support to me over the years. But It honestly had not registered to me the extent to which it all just sounds so unbelievable until I had to try and describe it all in the context of this podcast.

Since recording I have had a lot of time to reflect on our conversation. I regret not focusing on some of the “funnier” aspects of my illness, like that time a better looking doctor version of Matt Damon with the most gentle voice asked if he could look at my urethra while I coughed. Or the time I was at work and had to run behind a dumpster to have public diarrhea because every fucking public washroom in the neighbourhood was out of order and  I inadvertently found myself up to my ankles in marijuana (this actually happened). Oddly, it’s those ultra humiliating moments that remind me that one of the best things I can do to make myself feel better is to laugh at myself and the situations I end up in.

Living with an undiagnosed illness that is slowly causing problems in all systems of my body has often left me feeling hopeless, so I try hard to make myself feel as good as possible in the moment. I try not to get caught up in what may or may not happen to me, while recognizing that the fear that comes with near constant testing is valid. I try to remind myself that even though my illness is progressing, it's progressing slowly and for that I am grateful. I try to remind myself that I don’t need a diagnosis to validate my disability. I try to remind myself that there is something kind of awesome in being a rare medical mystery. It gives me strength that I didn’t know I had. It makes me feel powerful in difficult situations. Even though it feels like my body is breaking down, I feel stronger and more resilient than ever.

I have no idea if they will ever solve this mystery. Sometimes I really think they will and other times I think I will probably never really understand what is happening to me. One thing I’m sure about is that for many people my experience will seem extraordinary. It’s certainly unique. That being said, if anyone listens and my story sounds similar to yours, get in touch ❤❤❤