Facebook brings more people together, and why not over PKD? Here's a new engagement vehicle for PKD patients and those that love and care for them. An inspired patient created a site for those who want to share their heartfelt feelings. The creator shares with us why during a recent interview.
Pkdcure.org:
Why did you decide to create a Facebook account called Polycystic Kidney Disease?
Kathleen Hooker:
I found out about my PKD almost 7 years ago during the delivery of my daughter and I remember not being able to express myself. I was someone who could always engage people and for the first time in my life, I felt void of emotion, cut off. I wanted people who learn about or who have PKD to have a place to share their worries, joys or hopes.
Pkdcure.org:
Why Facebook?
Kathleen:
I'm in Marketing and work with social media, but ironically have never used Facebook personaly. I suppose it was partly due to privacy, but I also just use other media. I found Facebook to be the perfect place to join others interested in the community of PKD, many of whom I might not know otherwise. And if I can help people feel safe to express their thoughts and feelings, I'm using the power of social media for positive change.
Pkdcure.org:
Tell us more about that photo on your page. That's fascinating. What is it?
Kathleen:
It's a photo of what I call "healing artwork" on my back. I asked an artist to paint this design for me to help me come to terms with my condition. In the enlarged photo you can see normal kidneys surrounded by PKD kidneys and then surrounded by wings. It's meant to show the journey from normalcy to disease to hope. And the words printed are: Strength, Vulnerability and Optimism because those were the stages I went through from normalcy to hope.
Pkdcure.org:
Wow. What was the process of creating "healing artwork"?
Kathleen:
For me, I wanted to have a moment (and in this case it was two hours while I was being body-painted) where I could talk with the artist about my disease and let loose all the pain that was pent up inside me. As it was happening, I can honestly say I felt a sense of freedom from letting go of the pain, of letting go of the sadness I felt inside by my change in circumstances. That freeing was what inspired the wings.
Pkdcure.org:
So incredible. So what do you hope will happen with this Facebook page?
Kathleen:
I really don't have any huge expectations. It would be nice if people could not only engage with other people who have PKD, but also have a place where they could lessen the burden on their hearts. I could only hope that they would find peace within and perhaps also gain some inspiration from others, much like I did with my body-painting exercise.
Pkdcure.org:
Well we wish you well and hope the best for you and those that will find solace in this site. Keep us posted on your progress.
Kathleen:
Will do. I hope to keep writing poetry, like my 2011 Valentine (see wall) and I'm looking forward to seeing what others contribute. It's truly an honor for me to gather the voices of the community in an attempt to find inspiration and hope.