Last night, late, I came up with an idea. Or rather, I revisited an old idea that didn't take off when I first had it. Let me explain.
Three years ago, I was really wallowing in self-pity over this whole crappy fibromyalgia diagnosis thing. I somehow got onto a chronic pain message board on Yahoo and started sharing about how awful I was feeling with multitudes of other people. There was no shortage of chronic pain and illness back then, just as there are no shortages now.
While I was there, I came up with an idea. What if all of these people who are suffering from chronic, invisible illnesses and pain were to tell their stories in their own words in a book? I put the idea out there and got exactly one story from a woman I had gotten to know a little bit through email. Nothing ever happened and eventually I realized that all that board was doing was making me feel worse and I needed to "unjoin" the group. So I did and kind of forgot about the book idea. Until last night.
Okay, here's the funny thing. I actually brought this up with Toni Bernhard (author of How to Be Sick) on her Facebook page late last night and she generously shared my request for stories with her 5,000+ fans and agreed to write the prologue for me. Then I took my Ambien and went to bed. Woke up nine hours later and, when I resurfaced, there were all these people who were emailing me, wanting to be a part of my book. My little idea now, three years later, has suddenly come back into my life in a huge way. I don't know if it's God, or Karma, or what, but I think somehow I wasn't meant to do that book three years ago. I was meant to do it now. Okay, I'm cool with that.
So, I need to tell you exactly what I'm looking for. And I also need to let you know that I have set up a separate email address for your correspondence and submissions, to make sure I don't miss anyone who wants to be part of this project.
The address to submit to is: firstname.lastname@example.org.
I have not yet had time to really figure out exactly how I am going to do this or how I will decide things like whether I will take more than one story for the same illness, what the deadline is for submission, or how many people I will include. I think that probably a huge factor will be whether I feel your story is something that people who have that particular illness can relate to and that will also appeal to a more general audience with other chronic illnesses and chronic pain.
My goal is to tell my story and yours. No doctors, no medical advice. This is a book about you and what you have gone through and continue to live with. So, with that in mind, here is what I am currently seeking for my book. I may come out with other requests as stories come in, so this is not fixed in stone.
To be included, you must:
- Have a chronic physical or mental illness (I think to make your illness chronic, you must have been experiencing symptoms for at least three years. I will consider less if your story is compelling)
- Be able to tell it within 10-20 double spaced pages in a readable way in a Word document (copies of your story from your blogs are acceptable if you want to cut and paste, but please include anything else you want people to know or that I am asking for here)
- Be willing to sign a legal release that will allow me to use your story. I will be self-publishing this book out of my own pocket, so I think it's only fair that if any future revenue is generated, I will be paid back. You will not receive royalties, but you will be getting your story heard.
- Please spell check your work. Ditto punctuation and grammar. I will, of course, be editing all stories that are included and I will also be asking someone I trust to read for errors before it goes into the book. But it will be easier on me if you are being careful and re-reading what you have written before you send it to me.
- Do not include any information you do not want made public. If you do not want me to use your real name, please let me know what name you would like me to use. I also think it would be best if we don't use real doctors' names, so please just put in "Dr. M." or "the hospital." I don't want any lawsuits from angry medical professionals.
- Please do include your whole story from the time you began experiencing symptoms up through the present. Tell me about your journey through chronic illness. Did you get good medical or psychiatric help? If so, why do you think it was good? If not, why not?
- How long did it take for you to get a diagnosis? Or, if you haven't been given an official diagnosis, what do you think is causing your illness?
- How has your illness affected your day to day life? Did you have to retire or go on disability from your job? How much or how little are you actually able to do in a day and do you have "good" days and "bad" days? Are you home-bound or bed-bound by your illness? What restrictions do you have because of your illness?
- How has your illness affected your life with your family and friends? Have you lost a spouse or significant other because they couldn't handle your illness? Are you no longer able to socialize?
- If you suffer from chronic pain (and I would prefer stories that have this component. because it's the information I am trying to get out there), tell me about how much pain you have. Is it constant? What does it feel like? How well are you able to cope with it on a day to day basis? What helps the pain? What makes it worse?
This is a huge project for me to take on, with all that I have going on in my life and with my own fibromyalgia, so I will need to take frequent breaks. If you don't hear back from me right away, don't worry. I promise to consider every submission. If you have further questions, please feel free to email me.
Again, that's email@example.com.
Right now, there is no submission deadline. That will obviously change in the future, as things begin to come together, I see how many stories I get, I decide which stories I am going to use, and a potential publishing date becomes clear.
Thanks for taking this on! I think the world needs to know about invisible and chronic illness. With your help, maybe we can get our stories out there and heard. And a huge thank you to Toni Bernhard. Toni, without your book, this would not be possible. You are an amazing inspiration. You can find Toni on her website at How to Be Sick or on Facebook at her fan page How to Be Sick.