How did you spend your summer vacation? John Creveling, a PDF Research Advocate from Philadelphia, PA, spent it sharing his story with the Parkinson’s disease community.
At the beginning of the month, John’s story was featured in Neurology Now, a magazine widely featured in doctors’ offices and read by people living with Parkinson’s disease and other neurological diseases. Just a few days later, the Parkinson’s community voted for John’s photograph, Transformation, to be featured on the cover of PDF’s 2016 Creativity and Parkinson’s calendar.
We sat down with John to hear about his own transformation into an advocate for Parkinson’s disease — one committed to living positively and creatively on the way to a cure.
Q: Over the past month, your artistry was selected by more than 1,000 voters for the cover of the PDF Creativity and PD Calendar and your personal story of living with PD was featured in Neurology Now. How are you feeling about both of these events?
A. I’m thrilled that my photograph was selected for the 2016 PDF calendar cover and that so many people voted for all of the wonderful entries! It’s been especially gratifying to be recognized in this manner. Each of the nominations was beautiful and a “winner” in its own right. I’m very proud to be a representative of the hundreds of other exceptionally talented artists within the PDF community. When you visit the PDF.org website and view the section Getting Involved / Get Creative, you realize how many creative and artistic people there are living with PD. It’s an impressive visual!
I also am delighted to have had the opportunity to be photographed and interviewed by Anne Levy for Neurology Now. The magazine has an impressive ten-year record of providing information for people with neurological diseases. Over the years I’ve read a number of inspiring interviews with high-profile people published in Neurology Now. I have found it helpful to learn how others respond to neurological challenges. Neurology Now is an inspiring resource.
Q: In your profile in Neurology Now, you talk about being more present and living in the moment since your diagnosis of Parkinson’s. What does that mean for you?
A. To me it means living every day aware and alive in the world, mindful that the time we have is limited. I take nothing for granted. There are moments when I’m painting, taking photographs, learning to play the guitar, and writing poetry when I’m so involved with what I’m doing that I forget I have PD. I want to be fully present to those moments, to experience the joy of life, the joy of living. When I’m with you, I want to be with you. Not thinking about what I did yesterday, or didn’t do. I want to have more moments of seeing the beauty around me, not focusing on the negative aspects of life. It’s strange to say this, but, PD has given me the gift of today. I truly feel blessed in so many aspects of my life.
Q: In the article, you talk about staying active. In fact, you are very active in the PD community as an artist and as a Research Advocate along with your wife, Christina. For example, the two of you have shared information about PD with your community at health fairs. Do you enjoy this involvement and why is it important to you? Would you encourage others with PD to become involved as well?
A. I want to be perfectly clear on this point. I’m on a quest. I want to see Parkinson’s disease eradicated, in my lifetime. Not the next generation, or the one after that, but this generation. The only way that’s going to occur is when enough people empower themselves to get involved. I was stunned to learn that many research studies are delayed because not enough people participate. One person can and does make a difference! I have said to as many people who will listen to me, HAVE PD – WILL TRAVEL (Admittedly I borrowed most of that from an old TV show in my youth.) By the way, participating in research can be a “family affair” and a fun event. For example, last year my wife, daughter, grandson, and I donated our DNA to a research study where they also needed participants for a “control group.” This was in NYC and after we provided our samples, we went to the theater. We had a memorable and wonderful day. When you can, and where you can, volunteer as much as you can. Your involvement in research gives us all hope.
Q: You also mention that your creativity changed after your PD diagnosis. How so?
A. My wife might respond to this question differently. She would say that for many years I’ve been creative and artistic through my imaginative photography. And she would be right. However, about five years ago I started to draw and paint and experiment with a variety of mediums, including painting on exterior house shutters, mirrors, cigar boxes, or making collages with my wife.
At the time I remember thinking how much fun I was having experimenting. It was as if I had given myself permission to do something I had not done before, and (this was significant for me) not caring about the outcome. Creativity brings me much joy! For me, it’s like being on a personal journey and all along the voyage learning, experimenting, and from time to time, stepping back and looking at what I created – sometimes it provides my wife and me a lot of laughter too!
Every once in a while I can still hear my fourth grade teacher saying, “Stay within the lines.” Well, I don’t want to stay within the lines, real or imaginary. One secret I’ll share with you is that often when I’m painting I wear headphones and play music I love, such as rock n’ roll, take off my shoes and truly get lost into what I’m doing!
A. The word transform literally means to “go beyond.” As I was photographing these particular flowers I recall wondering what it took to get them to the stage where they looked so spectacular, so beautiful. Was it one individual that nurtured them, watered them, and provided the attention they needed? Or was it several people? How much time and energy had it taken to transform a seed to what I saw the day I took the photograph? What occurred passively?
The parallel can be made to us as individuals. From the day we are born we’re in a form of transformation.
Q: For readers of Neurology Now and those who order the 2016 calendar, what do you hope they take from your story and photograph?
A. Being diagnosed with Parkinson’s disease, as difficult as that can be, is not an ending. It’s another chapter in our lives. No one chooses to have PD. But we can decide how we are going to live with it going forward. My approach to the disease works for me.
Each individual that has an illness, or none at all, makes a decision as to how they will or will not respond to the challenges they are confronted with – there are no right or wrong ways. I know that I want to stay focused on the now that I have. To be present in the moment of living and not thinking about “what if,” or things I have no control over. The Irish writer Jonathan Swift said more than 250 years ago, “May you live all the days of your life.” That works for me!
Q: Your wife, Chris and you love to travel and have been to a number of countries. Is there one place where you have a particular memory or lasting impression you would like to share with our readers?
A. I have in mind a special place, but it’s most likely not for the reason many people might think. Last year in October and November my wife and I traveled to Spain, Portugal, and Morocco in a group tour with about 40 people. Many of the people were either from Australia, England, or Canada.
While I took my PDF baseball cap and shirt with me, I hesitated wearing either. I didn’t want to focus on my having PD. As I’m sure you understand, it’s a personal decision, particularly if at the time it may not be obvious you have PD. On the third day into our tour, in Lisbon, Portugal, I decided to wear the PDF cap – I’m so glad I did!
When the bus stopped I was among the first off and began almost immediately taking pictures of this beautiful city. At the time, unbeknownst to me this wonderful woman from Boston, England, had noticed my PDF cap and was asking Chris about it. Chris acknowledged that I had PD and just as quickly she mentioned that her brother-in-law also from England had PD. Angels appear when you least expect them. This very special ‘young 82′ year-old woman full of life shared with us that she had signed-up to donate her brain to PD research “at the appropriate time of course!”
When Rita and I chatted about PD we both shared a few tears. But she taught me a very important lesson, and one so obvious. If I want to help find a cure for PD, I’ve got to be willing to engage people in the conversation.
During the remaining almost three weeks of traveling with this wonderful group of people, many approached Chris and I and shared their very touching stories of friends and family members who had been diagnosed with PD. All this and more happened because I wore my PDF cap! In honor of Rita, I, too, have signed to donate my brain. At the appropriate time of course!
John Creveling of Philadelphia, PA, is a PDF Research Advocate and a member of the PDF Creativity and Parkinson’s Project.
View John’s interview in Neurology Now here.
View John’s artwork and order a free Creativity and PD Calendar here.