Even though I only have 20-something followers, I’m going to post a link to my Fluoroquinolone Toxicity story…I think. It reveals my real name, something I’ve been reluctant to attach to this blog. The anonymity of writing here is freeing. However, I have found that writing my story for hundreds, or even thousands of people to see WITH my real name attached has also been freeing. I’m no longer hiding my negative health experiences for fear of being judged as mentally ill, nor am I succumbing to the shame surrounding getting sick. Those days are over.
I honestly never thought I’d allow my experiences to challenge commonly-held beliefs about the illnesses I’ve endured. I’ve wanted to shrink away, even to pretend none of it happened once my health began to improve. I tried to ignore it, but it never lasted long. I saw people posting about FQs on Facebook all the time. Group posts showed up in my feed even if I went weeks without visiting the groups. I worried about people in my life being prescribed Fluoroquinolones, or being exposed to chemicals which can induce MCS. I saw clues that people I knew were reacting to their environments when they developed food sensitivities, or suffered migraines after dying their hair. I saw news stories about things like Post-Ebola Syndrome, and knew that medical professionals were likely ignoring the true, underlying cause of this “Syndrome”. I saw remnants of my suffering everywhere I turned, but felt so much post-traumatic stress from anything FQ or MCS-related that I’d get paralyzed and haunted by terrible memories. No wonder I wanted to run from the past.
Living with the knowledge my illnesses taught me really is like living in the Twilight Zone. I’m no longer in the matrix, and can never go back. I feel like I know all kinds of terrible secrets now – secrets about how the world operates behind the scenes – and I can never un-know them as long as I live. Nor can I pretend they don’t exist. Nor would I want to.
Eventually, I began to realize that I can’t sweep my experiences under the rug. Why on earth should I treat myself the way doctors, pharmaceutical executives, and industry lobbyists have treated me? I shouldn’t. Besides, if people like me are too afraid to tell their stories, nothing will ever change.
And just to clarify, I’m not implying that others should feel obligated to share or speak out if they are not comfortable. I think healing is a long and complex process, both physically and mentally. If you’re not ready or able to tell your story, you should honor that feeling within yourself as long as it’s there, even if it’s forever. Some people move on and live normal lives, treating their FQ Toxicity or MCS as a bad dream they’ve woken up from and want nothing more to do with. And that’s okay. Not that they need my permission, obviously – but the point is that people should honor their own healing in whatever form it takes. Speaking out is not for everyone, and I’m no better than anyone else for being compelled to do so. After all, it took almost 7 years for me to tell my story. And frankly, I’m still a little surprised that I told it.
Everything I write about is my experience, through my own perspective, which may vastly differ from yours. For me, I couldn’t move on. I couldn’t pretend my health ordeal never happened. I felt a strong urge to write my story, to not only help others, but to process my own experience. In the end, I found it incredibly healing. I feel like a weight has been lifted now. I feel more free than I ever have. And I feel a sense of accomplishment, knowing my words have the potential to help someone suffering feel less alone, or prevent someone from knowing the horrors of FQ Toxicity and MCS. Or maybe, just maybe, something I said could open the mind of skeptic, or challenge someone to offer more compassion to someone in circumstances they don’t understand. Maybe, or maybe not. I can hope, anyway.
“We don’t have to engage in grand, heroic actions to
participate in the process of change.
Small acts, when multiplied by millions of people,
can transform the world.”
~ Howard Zinn
And now that I’ve told my story the way I needed to tell it, I can move onto other projects. It’s opened doors, proving that I don’t need to fear showing myself, or being true to myself. I’ve struggled with that my entire life. I just hope I have enough time in this wonderful, crazy, and still really, really hard life to do some other things. I have art projects I want to do, writing projects, and even ideas for merchandise. Some of my projects are health-related, and some aren’t. I hope I can tackle most, if not all of them now.
“Tell me, what is it you plan to do
with your one wild and precious life?”
― Mary Oliver
You know what’s funny, though? I think I couldn’t tackle other projects until I had written my story. I think that, subconsciously, I knew it was the most important thing. I feel it in the way I look back and notice my former, underlying anxiety which was saying “There’s something I should be doing, but I’m not doing it.” I didn’t know what it was, except for the general knowledge that I’m not fulfilling my passions in my job or in my daily life. Many of us aren’t – many of us have to work and survive, often in professions that aren’t aligned with our dreams.
But this feeling went beyond that. This feeling was telling me to write my story. I know this now, because of the way I can breathe more freely now that’s it’s done and out there for everyone to see. I know by the way my world feels more expansive, more open to different possibilities – like a shell has cracked open for a seed to grow. Telling my story was the cracking of the shell which encased me as long as I’ve been alive.
I have to point out, too, that something I thought mattered to me in telling my story didn’t ultimately matter much at all. See, I posted it on my personal Facebook page, after 6 years of reluctance to discuss my health issues with people who didn’t already get it. Doing so was a huge step out of my comfort zone. I expected more of my friends and family – people in my immediate life who I don’t know from an online forum – to read it and comment, or at least press “like”. After all, health issues aside, I did something cool. I wrote something which someone published, for the first time in my life. Like an actual adult. (LOL) I was proud of myself, and expected more people to be proud of me, too.
That didn’t happen, though. In all fairness, the article was long. Maybe they didn’t have time to read it. Maybe they missed it. After all, not everyone has time to haunt Facebook all day. But I was a little disheartened to see that something I poured my soul into got fewer likes than some of my goofy posts about cats or dreams about Dan Aykroyd and the afterlife. I was a little bummed out…but not for long.
I realized I didn’t much care what my friends and family thought when I started getting compliment after compliment from floxie after floxie. Compliments, thanks, personal messages, and more. I even made a few new friends. What really got me, though, was the number of people who thanked me up and down for articulating my story in a way they couldn’t – because through telling my story, I told theirs as well. People expressed their gratitude, and some even said my story made them cry. Comments like those made ME cry.
I hope my real-life friends and family will heed my warnings about Fluoroquinolones, yes. But more than anything, I’m humbled and grateful that my story touched the people who understand what I went through – the people I shared this insane, horrendous, Twilight Zone experience with. The people I unknowingly wrote this story for. Because I’ve realized that perhaps the most rewarding aspect of telling my story wasn’t the potential to educate others or prevent harm; it was being a voice for people who are suffering so horrifically, feeling alone in the world. Knowing my story provided a small measure of comfort to people – the people whose ordeal I know intimately – means more to me than anything.
So, here it is.
P.S. I don’t mind embedding a link that reveals my identity in my blog, but if I do a google search for my name and this post somehow appears, I’m going to remove the link. Why? Because I’ve complained A LOT about how unhappy I am at my job. I don’t think general complaints are grounds for termination; like I mentioned earlier, many people work at jobs they consider unfulfilling – and mine has the added bonus of being grueling at times, as well. I haven’t complained about specific people or verbally trashed my workplace, just expressed my personal unhappiness, but still. I don’t want anyone associated with my workplace to read any of this, or know how unhappy I am. In spite of my lack of job satisfaction, and the fact that I rarely use my degree and feel overworked and underpaid, I am grateful to have a job that allows me to somewhat pay my bills and have health insurance. I don’t want it to end over some silly blog posts, especially when 90% of the people I know share a similar dislike of their jobs. I’m not exactly an anomaly, here. Anyway, there’s my disclaimer in case the link to my story disappears.