Trying to Separate “Me” from “Me”

I have at least two public identities:  the author, and the chronically ill guy.
Kevins

Originally, I set up this site for the author “me,” to promote my book(s). The same is true of my Twitter account, @KevinReinholz.

However, it wasn’t long before I found myself drawn into the quite excellent communities for individuals like myself who suffer from chronic illnesses (and often lack another means of support, connections with others who “just get it,” or who cannot endure the strain of traveling or even being out past dinner time in order to take part in a physical support group).

Logically, I *should* separate the two Kevin Reinholzes, create separate websites and accounts for the author pictured on the left, and the chronically ill guy pictured on the right. (Note: since all of my debilitating illnesses are “invisible,” I’ve got the added insult of “not looking sick” which is a whole can of worms my fellow spoonies can easily relate to–the portrait on the right more accurately reflects how I feel even if the portrait on the left more accurately reflects how I look on the outside).

To be perfectly honest, my illness doesn’t leave me with the energy to bother separating the two, or spending the time necessary to establish an “author brand” or to promote that brand, an essential part of becoming successful at writing. (If you think writing a quality book is the biggest struggle for a writer, you are mistaken).

On a more fundamental level, as well, it feels disingenuous to separate “me” from “me.” There’s only one Kevin Reinholz:  I’m 37 years old, I’m married with four children, I have plenty of anxiety about the future, most of it illness-related, and I happen to write because it provides me with a much-needed release and sense of fulfillment. Since there’s only one “me,” why should there be separate “online Kevins” presenting different faces to the world?

Until recently I’ve been a very private person, and it’s not always easy to “put myself out there” or become vulnerable to potential criticism, or worse, rejection. Nevertheless, I am who I am, warts and all, and I think I prefer to maintain a single public-facing identity rather than promote separate “brands” as part of some master self-marketing scheme. I don’t make money from talking about my illness, nor do I want to. I want to change an unjust law that penalizes disabled veterans, in particular those retired from the US military due to a service-connected disability, and I also want to further scientific understanding of the root cause(s) of my condition(s) and advocate for a change in the way the US military does business in order to stop inflicting this sort of immune and nervous system damage on my brothers and sisters in arms, but those are primarily self-actualization goals.

I do want to make money from my writing. My work options are quite limited, and legitimate, well-paying “telecommute” or “work from home” jobs seem to be more the stuff of myth than reality. Plus, turning my hobby and passion into my career has an extreme amount of appeal to me. Still, I write because I enjoy sharing my imaginings with others. I have no desire to become a marketing expert who spends far more time doing entrepreneurial sales and marketing work, albeit with my own product, than actually producing works of fiction. I am sure many, many authors who are unfortunate enough to lack a wealthy corporate patron feel the same way. They write because they’re passionate about writing, not acting as a sales person. I could sell used cars if sales were my passion. I could help others establish their “brand” if marketing were my passion. Instead, I publish at a financial loss, because writing is my passion, not those other things.

Come to think of it, I don’t see the need to separate “me” from “me.” I’m one person, an author who happens to be chronically ill.

Being Chronically Ill

Well, I suppose it’s time I “came out” about having a chronic illness. In truth, those who follow me or who have read my comments on others’ posts on Twitter, where I go by the oh-so-original handle @KevinReinholz, already know that I have ME/CFS and Fibromyalgia, and Dysautonomia/POTS, among other conditions.

It’s funny, I started this website not with the intent of blogging, but in order to promote my book, Hoffnungslose Ziele. That was the realization of a childhood dream of mine. The motivation and sudden urgency to make that dream of writing and publishing a novel became a reality due to my illness, which for the past 3 years has been slowly robbing me of so much else in my life. For me, stubbornly persisting and creating something out of my imagination and then releasing it into the wild was my way of resisting my illness and the many limitations it has placed on my life.

I have written a very long page about my illnesses, the history, the struggle to get diagnosed, and the impact on my life. I’m not ready to “go public” with that just yet, so please bear with me if you’re interested in a long read about my evil health woes. Meanwhile, I just purchased Jen Brea’s film documentary “Unrest” and would put that out there as a “finally!” in terms of bringing attention to the oft-neglected and much-derided (but horribly debilitating) illness of ME (aka CFS). Everybody should see it. I’m not going to try to claim that my personal experience has been the same as Jen’s, because it hasn’t. Each patient is unique. But I do think her courageous work shines a much-needed light on a health epidemic that has been very much ignored and neglected.

I had no intention of ever going public with any of my illnesses. I planned to present a happy, confident public face like so many of our friends and families do on platforms such as Facebook (which I really don’t enjoy these days because it is so incredibly fake, largely snapshots created by people at their very best, or political whining and memes, or competitions for attention over who has the most drama in his/her life). After all, I was promoting a “brand”: Kevin Reinholz, freelance writer/author extraordinaire. I’ve been a relatively private person for quite a long time. Part of that was getting burned in the past for being too open, part of that had to do with professional considerations, and part of that had to do with a desire to protect/shield my family. A public person I was not.

Suffice it to say, something changed. I ventured out into the world of Twitter (which I have come to enjoy quite a bit), and between enjoying reading posts by my favorite celebrities and the occasional news story, I tweeted the occasional thought or promotional post related to my book. Then I read about a young woman suffering from two of my most debilitating conditions–ME/CFS and Fibromyalgia–on my go-to platform for news, the BBC. (Sorry, American journalists). I was absolutely appalled by her government’s heartless treatment of her disabilities, which struck a familiar chord with many of my own fears and insecurities about my own diagnoses as well as my future. So I reached out to her on, where else, Twitter.

That’s when I started making friends on the platform, friends who suffered from the same “invisible illnesses” I do. Friends who understood what I was feeling because they were feeling it themselves. There was something extremely validating, even comforting, in knowing that others felt and suffered as I did. Granted, I wouldn’t wish my illnesses on my worst enemy, but knowing I wasn’t alone meant a lot.

I was also impressed by the courageousness of this particular woman in going public with her chronic illnesses using her real name–no hiding, no pseudonyms, facing the full brunt of Twitter trolls and heartless idiots who don’t know the first thing about either her or her illnesses. She became somewhat of a hero and a role model to me. I respect her immensely. So, I resolved to try to emulate her, even just a little, by going public with my own illness story, in the hope that others unable or too afraid to go public could read about my experiences and feel validated about their own. In truth, I’ve already let most of the proverbial cat out of the bag, in the course of publicly conversing with my #spoonie Twitter friends.

I don’t expect to ever have nearly as many followers as my #spoonie hero, or as powerful of a voice, but in my own small way I hope to contribute to the conversation and the solution by lending my voice to the cause. More to follow as I save up enough spoons to write!