Shortly after I started this blog, which was sometime in 2012, I was knocked out of commission by a terrifying illness that left me paralyzed from the waist down. Over time, I slowly gained some strength back, and I learned to walk again. Still, I spent over a year with no diagnosis and no treatment other than copious amounts of rest (sitting on my butt) and exercising when I could (walking maybe to the end of the block on a good day). There are so many reasons for me to be bitter about the time I spent fighting with doctors and trying to plead my case that I was not simply suffering from spontaneous laziness or even mental illness. It was a frustrating time, but I tried really hard to keep my head up and not let the bitterness seep into my soul. Talk about an exhausting experience.
Fortunately, that time has come to an end.
If I’m being honest, it came to an end quite a while ago, but I’ve been hesitant to write about it for fear of jinxing myself. I’ve been sick with something chronic for most of my adult life, and I know the feeling of “relapse” all too well. I was worried that if I celebrated publicly, the Universe would promptly reward me with more crap.
I suppose that could still totally happen, but I’m going to celebrate anyway.
In September 2013, I finally received the correct diagnosis. My acute scary episode that landed me in the hospital in May 2012 was just the latest straw in a long-building haystack, and it was that last piece that pushed my body over the edge. The diagnosis I received a little over a year ago accounted for an entire decade of illness and weird symptoms. What was once thought to be Lyme Disease turned out to instead be Brucellosis (look it up), and that is why previous courses of antibiotics had been marginally helpful, but why I would still relapse like clockwork after a certain amount of time. Because it’s also virtually non-existent in the US, no one had tested me for it or even thought of it as a possibility.
Thank goodness for my small-town doctor who just couldn’t let this puzzle go unsolved.
Since I first got weirdly sick in 2005, I never thought I’d know the feeling of “normal.” Symptoms then persisted for so many years – I had just come to accept the fact that “healthy” was a relative term and that I would always have the monkey on my back. I can hardly believe it, but it has been over six months since my last round of treatment, and I am totally fine.
Let me define “totally fine.” I have absolutely zero symptoms. None. Not one. Even in my times of remission in the past, something has lingered. Now, nothing. I am totally fine.
I recently moved across the country. Totally fine.
I recently went on a hiking/camping trip. 5.8 miles carrying a 40lb pack. Totally fine.
I go out dancing at least once a week, sometimes more. Totally fine.
I say all of this not to brag or rub it in the face of anyone who is facing something chronic and debilitating. Believe me. I have spent so much time in that space – I would never dream of disrespecting anyone “fighting the good fight” as they say. I’m saying it because I’m grateful. I’m saying it because I’m excited about the things life may have in store for me after all (after thinking for so long that my life was more or less over).
More importantly, I’m saying it in case any of you out there are suffering without a diagnosis for something. In the worst moments of my illness, I was ready for anything. Cancer? Fine. MS? Fine. ALS? Fine. I no longer cared what it was – I just wanted to know. I got to the point where I could handle even the scariest of diagnoses, because at least I’d know what I was in store for, and at least I’d know what I was up against. The not knowing was the worst of all.
Actually, no. The worst of all was being told by medical professionals that I was making it up. That I was too weak. Too sensitive. “A pretty girl who was clearly starved for attention.” That I was someone who enjoyed being sick and was obviously looking for a break from working hard. After hearing enough of that crap, I actually started believing it. Every day became a test. I would say, “I’m going to try and walk a mile today just in case I’m making it up. If I’m just making it up, I’ll be able to walk a mile no problem.” Then, I’d find myself unable to get out of bed for a week because I had tried to push myself so hard. It was a cycle of mental torture.
For any of you who may be caught in a similar cycle – try like hell to hold onto what you know is true. Don’t let someone else’s insecurity about not having the answer affect your life or your wellbeing. Doctors will say crazy things. Well-meaning friends and family will say horribly mean and insensitive things because they just don’t know any better. You have to be your own best friend.
There is absolutely nothing heroic about what I went through. It was what it was and now it’s over. The heroic thing to do now is to grab life by the balls and make sure that I never, ever take anything for granted. I have seen what it looks like when the simplest of things are just snatched away in the blink of an eye.
So go have a good day, whatever that may mean for you and your current situation. Tomorrow could be bringing a whole bunch of weird with it, so enjoy what’s in front of you right now.
Now, please excuse me while I go dance in the rain.