Sunday, July 28, 2013

Stepping Outside Of My Comfort Zone

On July 3rd, I started a thirty day Kickstarter campaign to try and raise money to self publish my first book, Tales From The Dry Side: The Personal Stories Behind The Autoimmune Illness Sjögren's Syndrome. You can read more about the Kickstarter campaign on my blog entry: Tales From The Dry Side Kickstarter Project. The long and short of it is that I am trying to raise $7,000 by August 3rd. It is an all or nothing venture which means that I need to raise all of the money or I receive nothing to publish the book. If people want to donate, they go to my Kickstarter website where they pledge whatever dollar amount they want, as little as $1.00, and their credit card is not charged until the deadline and ONLY if all $7,000 is raised. The $7,000 that is raised is used to publish the book and includes a lot of services which you can read about on my Kickstarter page. It also includes fees and the cost of rewards as it works on a rewards system based on your level of donation.

As of right now, July 28th at 6:40pm, $6,075 has been raised and there are five days left. If that seems somewhat incredulous to you, you are in good company. I am sitting here tonight quite amazed myself.

This is the first time I have undertaken a project like this and I have to be honest, I absolutely HATE asking for money. I always have and I always will. And, it will be a very long time, if ever, that I do something like this again because it makes me that uncomfortable. I did not go into this project without doing my homework and exploring other options. I pursued the traditional publishing route for nine months and I couldn't even get someone to read the manuscript. I considered publishing the book exclusively as an eBook through Smashwords or a service like Amazon Kindle but I feel strongly that this book needs to be accessible to the people who need it most, those with Sjögren's syndrome. And many of us are disabled or broke from medical bills and do not have the access to that type of technology.

Now there are five days left and I am 86% towards my goal. Anyone can have a Kickstarter campaign but my belief is that it takes a lot of work to have a successful one. I have spent anywhere from three-five hours a day on it. And it has been difficult at times, very difficult. Because of the limited time I have to raise the money, I have felt pressure to push past my own bad physical days to get at least the bare minimum done to make the project successful. Thank you e-mails to contributors, social media promotion, canvasing towns with flyers, newspaper interviews, returning the thirty-fifty e-mails and Facebook messages I have been getting every DAY. The list goes on and on. I have also endured criticism from a few people who feel the need to try and knock me down; complete strangers who think that it is their place to criticize my choice for doing a Kickstarter campaign and promoting that campaign. I think in the social media world they are called "haters". I will be honest, I have let a few get to me in the past few weeks. I cannot help it. I am a sensitive soul; more so than many people realize.

I have also had to step outside my comfort zone. I am very uncomfortable talking on the telephone with people I do not know extremely well, yet I have given two newspaper interviews over the phone and talked to many other people I do not know at all. I have walked into countless businesses and medical offices with flyers and letters and had to explain what I am trying to accomplish. Excluding my own doctor's offices, each time I have done that, it has made my heart race and my palms sweat. I have had to learn the ins and outs of the self publishing world as well as the fundraising world, both of which were completely foreign to me until several weeks ago. Because fundraising is typically frowned upon for something like this, I have had many doors slammed in my face both on social media and in the non-social media world; often from the very places that people turn to for resource information about Sjögren's. Rejection is never easy, especially when you are asking for help on a project whose goal is not to self promote but rather to assist other people.

So in addition to some anxiety and extremely long days, where has stepping outside of my comfort zone gotten me? It has gotten me to a day where I have been able to raise over $6000 and more importantly, be able to spread the word about this illness that has not only taken so much from me, but also given me so much back. It has gotten me to a place where upon coming home in the middle of the night, I stayed up an extra hour last night to read two letters that arrived in my mailbox from complete strangers; each with their own Sjögren's story to tell. There is something strikingly personal when people reach out to you in that manner.

Stepping outside of my comfort zone has reminded me of the resilience of the human spirit. So many donations that have come in also have come with a story. Sometimes just the stories themselves come. When I had my first Sjögren's symptoms five years ago, I never imagined that there were so many other people who suffered in such a similar way. People who, until they saw the newspaper interview I did last week, thought they were suffering alone. Every moment of stress and anxiety I have had over the past several weeks is worth it just to know that even one person in this world feels understood and less alone.

Stepping outside my comfort zone by doing this funding project has allowed me to see so much good in my family and friends as well as in complete strangers. So many people are investing their time and energy to support me in this cause; some have Sjögren's, many do not. I have had the opportunity to hear that my taking on this book and Kickstarter project has encouraged some people with chronic illness to step outside their own comfort zone. To demand better care from their medical providers and in some small way, to start pursuing their own dreams. Because as one woman mentioned to me in an e-mail, being disabled does not equal being non-productive.

No, it certainly does not.


  1. You are doing great Christine... Wow. You have inspired me, even to speak with my doc about more of what I am feeling and it not just fibro. I so hope your story can be published. I just may bump my $25.00 to $50, so I can get a book!! .... or I will buy one, one way or the other, but I am sure this will be a good read for someone who has Sjogrens.