The Story behind Sharing My Story

A Guest Blog by Jessica Kenley*

*Jessica Kenley is a mom and author of KIDOWED, a book in which she shares her own personal account of her family’s experience with EB and the impact of losing two of her children to the skin disorder. She was recently featured in a two-part Q&A series. Click here to read part I and part II of that interview.

This entry is about my experience in publishing a book about my life in a two-year snapshot for the world to see—an e-book—but still a book.

I started writing a diary every day on the sage advice of an amateur grief counselor. I should clarify—she was not an amateur at grief, having lost a husband who she had had more years on earth with than not, but possibly an amateur at counseling. Of the variety who thinks the glass is always half full if you look at it in the right light and that we of the grieving community should discard our negative thoughts and only voice and allow ourselves to think the positive ones. She didn’t quite know what to do with me.

Most of the people in our group were older women who had lost husbands of your everyday garden variety diseases of old age —cancer being the most common. I should point out that I am not discounting or minimizing their grief at all, but I did find it difficult to relate to them. I was the youngest in the group by at least 25 years and the only one who was there as the result of losing a child—well on my way to two, for that matter. I didn’t have any positive thoughts. I was furious. We eventually started having “individual sessions” and she told me one day after listening to me rant over iced teas for a while that I was going to “burn down the world” someday. I still don’t know what that means, but I think she meant it in a good way, as if I had the potential to change the things about the world that I didn’t like. In any case, that’s how the book began. Eventually it turned into something that I was writing as if I was talking to someone else, if only because I didn’t have anyone to talk to in such a frank and honest manner about what was running through my head on a constant basis, especially while I was watching my daughter die in front of me every second of every day while simultaneously knowing what was going to happen to her and being absolutely and completely helpless to stop it.

The bottom line is that the book is brutal to read. It asks people of all walks of life to stand beside me through my hellish experience and endure the aftermath, too. It is not an easy read. It wouldn’t even be an easy read if it were fiction. I wasn’t thrilled with the idea of people I didn’t know reading extremely personal and potentially humiliating things about me (such as my dating and drinking habits) while I was trying to cope with the deaths of my children, but I did feel like the importance of EB awareness trumped any qualms that I might have about judgment from strangers, which is why I published it, and I would encourage others to do the same.

The response I have gotten from people who have read the book is overwhelmingly positive, with some negativity and judgment that I believe comes mostly from misunderstanding sprinkled in here and there, which is not so bad, all things considered. You can’t win ‘em all, as they say.

Here are the things I wish I would have known before I published the book or that I wish a friend might have told me, even if it was hard to hear:

  1. You’re not likely to get rich or famous. Not even close, especially with an e-book. Authors who make a living from writing do it for a living, all the time, every day, and fail continuously before success, even if they have something that is extremely important to say, and these are the ones with advertising and agents.
  2. People will judge you relentlessly and harshly, if only because they cannot identify with your situation. Do NOT, under any circumstances, reply or comment on negative reviews of your book. It makes the author appear petty and unprofessional. On the flip side, DO encourage people who liked the book to post positive reviews. The sad fact is that people who don’t like it are much more likely to take the time to review it than people who do, so when people contact you telling you how much they like it, tell them to post a review.

Here is what I can tell you…

  • If you think your book is worth publishing, I can guarantee you that a lot of other people will, too. You cannot fake passion or truth. If you truly believe that the world should know about it, then say it. Really, what do you have to lose?
  • You will most likely create a following of people who are passionate about what you publish, and even if it’s just a few people, who cares! Those are people that will spread the word where you couldn’t.

I published Kidowed because I thought that more people should know about EB. The e-book has been in existence only since July 2012, and about 10,000 people have read it. The vast majority got it for free, and I got some bad reviews, but I got many more good ones, and consider this—upwards of 8,500 of those people never knew EB existed before I published it, and now they do.

Because I published this book, I was afforded the opportunity to do a reading at a prestigious international conference that had doctors and researchers from 25 different countries who were all involved with EB in some way, which I count as the highlight of my career as an EB advocate. And my little e-book made it to #1 for free memoirs that weekend on, if only for a short time.

Also, I am currently a guest blogger on this fantastic website—would you have known that I existed if I hadn’t published a book? A difference is a difference, so don’t hesitate when given the opportunity to make one. You won’t regret it.

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