The book that I am talking about of course is the one that we have been working on for three years now. It is a collaboration of authors, bloggers, writers of all types and artists who for all intents and purposes live every day of their lives with some type of invisible illness. The idea was started by a friend and fellow blogger who writes a blog called Pajama Daze. Here is how this came to be…
She got in touch with me three years ago with the idea of approaching all these friends she had made throughout the years of writing her blog and she asked me what I thought about everyone writing a small essay (500-1000 words) on certain topics that we could turn into a book. Now, you have to understand, she has always kept an upbeat tone to her blog where it is a place that people with invisible illnesses can come to get positive vibes to try to improve their outlook on life when they are in the dumps. I guess that I should probably explain invisible illnesses to you so you know what I am talking about before I get too far into this.
An “invisible illness” is a disease that is just as devastating as losing a limb, losing your hair from chemotherapy due to cancer treatments, having a large scar on your chest from open heart surgery but our illnesses are NOT visible to the naked eye. Our illnesses are like having MS before any neurological symptoms start to show, having Chronic Lyme Disease which strips you financially of everything that you own and attacks every organ system in your body as the co-infections steal your short term memory and cause light sensitivity and inability to tolerate noise, other diseases like severe chemical sensitivities where if you happen to walk into a store and the woman in front of you is wearing perfume you have to run out immediately because you cannot breathe and will end up in an ambulance on the way to the hospital, or fibromyalgia where you wake up every day hurting all over but are expected to continue to perform the duties of a “normal” person just because the pain isn’t visible and you can’t possibly be hurting THAT MUCH that you can’t get out of bed to get the kids off to school. This is what I am talking about when I say, invisible illnesses. We have serious, oftentimes life threatening diseases that cause us debilitating symptoms but because people cannot SEE them with the naked eye, they don’t believe that we are sick.
Let me be the first to tell you that everyone who contributed to this book IS VERY SICK. However, by sharing their stories and their coping mechanisms we have put together a book that is over 230+ pages of incredible personal tales of courage, medical information about these illnesses and profound viewpoints that these amazing people came to realize along their journeys, as they faced a society that often mistreated them in a way that will shock you.
The first part of the book is the Warrior’s Tales where each person had a chance to introduce themselves and tell their stories. After that, we took a different direction and created a section on tips and tricks on how these people found new ways to cope with their new lives in these bodies that now had significant limitations. Then we provided a section on medical information, testing information, resources, glossary terms, charts and things you should be asking your doctor if you have suspicions that something is not right in your own body.
This book is a true gem and after being the editor, I have had the chance to read it cover to cover searching for grammatical and punctuation errors. I can truly say that the stories will grab you in awe as you shake your head reading how some of these patients went to 15 or more doctors, all over the country, looking for answers as to why they were getting sick and some of these doctors actually laughed in their faces!!! Thankfully, they never gave up and the ones who kept pushing are the ones who are the success stories now.
When you get to the second section, you will be amazed at the lengths these people have gone to just to find the simplest treatments to decrease their pain from an 8/10 to a 6/10 so they can get out of bed for 5 minutes a day to eat dinner at the table with their children. Some of their marriages have failed because their spouses couldn’t take the pressure of losing the “person that they married.” It is a crushing blow because this is when they needed family support the most. You will hear about treatments that you never knew existed and about people who came to the United States from other countries because their own countries don’t even acknowledge that their diseases exist!
Yes, in the 21st century we are still fighting battles with the medical system here in the United States and all over the world just to get our illnesses recognized and the ongoing battle with insurance companies to pay the bills is an even bigger battle. We are going bankrupt, losing our homes, fighting to be recognized just to get disability when we are already in wheelchairs and cannot even think about working. We are going to food pantries to feed our families because we are being denied services that we paid into throughout our entire working lives, simply because our illnesses are “invisible” and the CDC/NIH is using this as an easy way to get out of paying for our care despite all the supporting documentation from our doctors. What is worse is that they are now going after the doctors that are trying to take care of us!!! They are scrutinizing the charts in these doctors’ offices and taking them to court to remove their medical licenses for treating us with the necessary doses of medication to get us well. The politics surrounding our illnesses will astound you.
This book will be the biggest eye opener, whistle blower to hit the nightstands of the reading community in decades. I would like to encourage you to keep your eyes glued to Amazon.comfor the release of When Bodies Break: How we Survive and Thrive with Illness and Disability which should be coming out in the next few weeks.
If you cannot remember the entire title, that’s ok. I thought it was a little long but the author wanted it. I originally edited it and it was called “Our Broken Bodies” which I LOVED but she has chosen a title that she wants her labor of love published as, so she gets the final word. If nothing else….just remember When Bodies Break….. and the Amazon search will likely do the rest. The paperback print version is only going to cost you $6.99 which is AMAZING for a 230 page book with this amount of incredible content in it. If you want it sent to you by ebook to your Kindle it will only cost $4.99!!! I was stunned that she decided to charge so little but again, it was her choice. I think that she just really wants to get this information out into the hands of the public as a community service more than anything else.
Here is the most touching part that will make you want to buy the book if you aren’t already convinced. ALL of the proceeds made on the sale of this book are being donated to the Benaroya Research Foundation. No one that worked on this book was paid a dime. Everything was donated to us. A good Samaritan gave us the money to get the first batch printed, people along the way have helped us by doing the cover art for free, not only was I a writer for the book but I donated my services about four months ago to do a preliminary editing job on the entire manuscript and was called upon again later to number the pages but most importantly, the author has coordinated gathering all of the submissions from all the writers and organized the layout of the book herself!!
This has truly been a labor of love from everyone involved and when it comes out on Amazon.com, we will all be jumping for joy (some of us in our beds, others on their canes or even some in wheelchairs) to finally see it in print. Why did it take us three years to finally get it out to you? Well, when sick people decide to write a book we are at the mercy of our health. Collectively, we have had heart attacks, fallen out of remission and back into full blown illness, been diagnosed with cancer and started treatment, we have moved multiple times, lost loved ones, fought insurance companies to pay our medical bills, swallowed 60 pills a day, gone to 15 doctors’ appointments a month and generally tried to live our hectic lives of illness while trying to also meet the deadlines of putting out a book that was done purely by donations. We also did this with no prior knowledge of how to publish a book. I would say that we did ok for a bunch of people who struggle every day just to get out of bed!
Keep your eyes on the Amazon website for our book When Bodies Break….. If you can set a notification for it please do. It definitely won’t break your bank to get a copy and it may be the best thing you read during the holiday season. We gave you everything we had writing this book and I hope that you know how much it means to us. Thank you in advance. I know that Benaroya will use the money to help us find a cure if they can for some of these invisible illnesses, if not in my lifetime then maybe for someone in the future. We have done our best to make a difference in the world and that is good enough for me.
From Pajame Daze and Lyme Lens….