Last week, we shared Part One of a recent interview with Jessica Kenley, the author of KIDOWED. The book recounts the story of a single mom and her experience raising two children diagnosed with Epidermolysis Bullosa who quickly succumbed to the skin disorder during their infancy. Now as mom to young Lilliana, who has not been diagnosed with EB, Jessica continues to interact with other EB families, some struggling to manage the stressful day-to-day care involved and others trying to cope with the loss of their child to the ravaging disorder.
In this conclusion of the Q&A, Jessica talks about the outcomes of her experience and where she sees the greatest need within the EB community.
Q. EB Resource (EBR): What would you say is the overall message of your book, "KIDOWED?"
A. Jessica Kenley (Jessica): There are several messages that I think are extremely important that I tried very hard to convey with the book — the most critical one is that Epidermolysis Bullosa in all of its forms is a horrible disease that robs children and families of having a normal existence in multiple ways, and there is no good reason why more people shouldn’t know and care about it so that more money can be raised for better treatments and a cure. The "sub- messages" include ideas like how some people could be more sensitive to grieving parents, how the medical community could improve some of their practices (especially when it comes to honesty) with the parents of sick children and, with any luck, a message of hope to people who have lost someone very dear to them. It is possible to survive these things, even if one does get stuck in a stage of grief for a very long time.
Q. EBR: What has been the most unexpected outcome for you from writing the book?
A. Jessica: The most unexpected negative outcome of the book has been the judgment, rage and sometimes outright hatred that I got from some people, both people that know me and people that don’t, about my personal choices, my feelings and how I portrayed some people in the book, even though all the names were changed except for mine and my children’s. I never expected that the message that some people would get from the book would not be about spreading awareness about EB at all, but that I somehow was out to hurt people emotionally, even though I had made several disclaimers (both in the book, online and personally to people) about how the book is a journal and was not edited or censored in any way. I did not feel like the book should be censored, because it might take away some of the emphasis and meaning of my words. I did not want it to come across as "sugar-coated" in any way. I also was surprised that some people in my family stopped talking to me at all because they didn’t "want to be in my next book." Others asked me not to put pictures of them holding Ethan and Kaylee on the Kidowed Facebook page, because they wanted their privacy protected. That really surprised me.
I will always be extraordinarily proud that I was able to be Ethan and Kaylee’s mother, and that I got to be involved in their short lives to the extent that I did, and I guess I mistakenly assumed that other people in my family felt the same. Honestly, I have stalled on the second book because of these unexpected critical reactions. Obviously I knew that not everyone would like the book, but I did not predict some of the very hurtful reactions I got.
The most positive unexpected outcomes of the book have been the great many new friends that I have and old friends in the EB community that I have been given the opportunity to reconnect with. I was extremely honored to be invited personally by the President of DebRA Canada to speak at the DebRA International Congress in September of 2012, especially since the book had only been published in July and only in an online format. I also got a lot of help in spreading the word about the book from people in the EB community, many of whom I didn’t even know, which was a really wonderful surprise, since the book has never been formally advertised. I just cannot express how much it means to me when people take the time to message me or write lovely reviews out of the kindness of their hearts — or follow the Facebook page. It is really heartwarming and inspiring that the book has reached thousands of people. It makes me feel like it was well-worth it to publish it when someone who has never heard of EB reads it and then becomes involved in the cause. There’s just nothing like that kind of feeling. It makes me feel like I am doing my small part in spreading awareness.
Q. EBR: Since releasing your book, you’ve been very open in sharing opportunities for others to talk with you about your experience and have even made the book available on several occasions as a free e-book download. What were your reasons for offering free e-book downloads?
A. Jessica: I wanted to make sure that even people who maybe couldn’t afford the book could still have the opportunity to read it. I would never want it to be cost-prohibitive, and the point of the book was never to make money on it. It was and is to spread a very important message about a devastating and little-known disease. This is why I have also put the Kindle Free Reader Apps link on the KIDOWED page several times. I want people who don’t have a Kindle to be able to read it too if they want to. The most successful free giveaway was the weekend of the DebRA International Congress, where in only two days, 5,360 people downloaded the book for free, and it actually made it to #1 on the Amazon site for memoirs, thanks to the advertising efforts of the wonderful people at DebRA Canada. It was simply amazing, and nothing could have made me happier. My dream is that one day soon EB will be a disease that the whole world knows about, so that we can finally have a cure. Too much time has gone by already without good treatments, especially for children whose families are underinsured or do not have health insurance. This has to change.
Q. EBR: Have you been involved with any specific EB-focused organizations or patient/family advocates to collaborate on educational campaigns or other efforts to raise awareness about EB? And if so, can you talk about those?
A. Jessica: I am on many EB-focused Facebook pages, and several personal pages or blogs of people who have EB or a child with it, and I try whenever I can to offer what I know about it when someone has a question about wound care or advocacy programs or really anything that I can help with. I have also recently gotten involved with Debrabox.com, which is out of Ireland, and is a new company that is just getting off the ground that will sell merchandise in order to raise money for EB charities. Unfortunately, I have only just recently become involved with this company, so I don’t have a whole lot of information about it, but I have high hopes for their efforts, especially since the man who founded it has a son with EB and is very motivated.
Q. EBR: From your own communication with EB-focused organizations and other families who have shared their stories, whether it’s through social media, blogging or talking with local media, where do you see the greatest needs of the EB community?
A. Jessica: The greatest need that I see is still money for struggling families, better insurance coverage and more patient advocates, especially in hospital settings. EB is an extremely expensive disease to treat, even with health insurance, which is not something that everyone realizes. When a child is diagnosed with EB, the entire family’s whole existence often becomes dealing with it, and things like traveling to doctor visits constantly can be taxing on even well-off families, especially if they need to go to an EB clinic that might be thousands of miles away and require a lengthy stay. This might also include hotel stays and large food bills, not to mention all of the specialized equipment that this might necessitate.
I hear heartbreaking stories often about families trying to raise money for a special seat, a wheelchair, a van or even actual wound care supplies that they just cannot afford. Other supplies that EB children and adults might need that are rarely covered by insurance include things like specialized feeders, special diapers and clothes, nutritional supplements. The list goes on and on. This should never happen. These families undergo so many hardships as it is that they just should never have to worry about being able to afford the best care possible for their children. My children both had two different insurance companies, and even eight years after Ethan was born, my finances have never recovered. It is also extremely difficult for single parents to afford caring for a child with EB, as working is often nearly impossible, and for people who have adopted or are in the process of adopting a child with EB, especially from a different country, because then they might not be eligible for health insurance for an extended period of time. And of course, God forbid the worst happens, funeral costs are very expensive too, as are headstones. The cost of this is also something a parent should never have to worry about, as they are already enduring the most painful thing any parent can. I’ve even read one particularly heart-wrenching story about a child who died at a hospital that was very far away from the family’s home, and they had to have a fundraiser in order to transport the child’s body home and to pay for funeral costs. How awful.
The other great need, as I mentioned, is more patient advocates. The ones that I know of are fantastic people who seem to literally eat, sleep and breathe EB, and they do a WONDERFUL job, but there just aren’t enough of them. I realize that this must be a very taxing job to have emotionally, physically and financially, and my guess would be that there aren’t more very active EB advocates, because they probably suffer from "burnout" or "compassion fatigue," such as is common in health care and social work. My dream job would be one that entailed going around to hospitals that currently are treating an EB patient and stay at the hospital with them to support the families and the patients and educate the medical staff on how to best care for an EB patient and also to give the parents "breaks" to sleep or eat or get out for a while without having to worry about their child. I would have loved it if someone was there for me when my son was in the hospital who knew better how to handle the medical professionals and also the basic "ins and outs" of the health care system. Studies have shown over and over that any patient gets better care when they have a strong advocate and goodness knows that these families can never have too much help or support.
Q. EBR: If somebody out there reading this interview feels inspired by your story and wants to do something similar by writing their own book, what advice can you offer them?
A. Jessica: Even though it wasn’t my first choice, I actually would recommend putting a book online first to gauge the reaction and success before spending the money to advertise and having to go through the many inevitable and discouraging rejections from publishers. Part of the reason I hadn’t published my book sooner is that I didn’t have the resources, and had I known how fast and easy it is to publish online, I would have done it much sooner. I still do hope to publish "KIDOWED" and its sequel in print, but the online publishing option was really a blessing to me. My other bit of advice would be to "Just Do It!" I agonized and put off publishing "KIDOWED" for years, because I just didn’t know how it would be received, and basically I was scared that it would end up being a terrible decision, but it wasn’t, and I’ll never regret it even if it never sells another copy. It has given me the amazing opportunity to reach thousands of people that might otherwise have never heard of EB, and that’s nothing to sneeze at!