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“How Illustrator J.G. Jones Is Using His Art To Raise Awareness About MPNs, Myeloproliferative Neoplasms”

No matter what journey you’re on, it’s important to take life one day at a time. While there have been speed bumps in the road, I’ve been working in the comic book industry for about 25 years, and I’m looking forward to continuing to create stories for 25 more.

As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing J.G. Jones.

J.G. Jones is an American illustrator who made his debut in the comic book industry in 1994. Since then, he has become renowned for his work on many well-known comic book series, as an in-demand cover artist and illustrator. In 2009, J.G. was diagnosed with a rare, chronic blood cancer called polycythemia vera (PV), which transformed into myelofibrosis (MF). Both PV and MF are part of a closely related group of progressive blood cancers known as myeloproliferative neoplasms (MPNs). Following his nearly decade-long journey living with an MPN, J.G. is using his talents to bring to life the powerful and personal stories of individuals impacted by MPNs, drawing on his experience living with the disease. These illustrations are part of a larger campaign called Rare Reflections: MPNs Unmasked, which intends to bring to life the impact MPNs can have on the lives of patients, their families and caregivers, and help those across this rare disease community find their voices and feel heard. Despite considerable challenges over the years, J.G. emphasizes the power of a positive mindset when managing a chronic illness as he strives to raise awareness and educate about MPNs.

Thank you so much for doing this with us! Can you tell us a story about what brought you to this specific career path?

I was always interested in comic books as a kid, but sort of drifted away from reading them when I went off to college and my first newspaper job. After I earned a graduate degree in painting, I moved to Brooklyn, NY, where I was working at a small weekly newspaper company. That’s where I met a coworker and friend of mine who was also interested in comics. We would go into the comic book shop every Wednesday when the new releases came out and decided to see if we could make our own comic. We wrote a story and I drew a few pages that we took to a comic book convention in NYC and I was hired on the spot! I quit the newspaper job, and I’ve been making comics for over 25 years now.

Can you share the most interesting story that happened to you since you began leading your company or organization?

There are so many stories I could share. It’s certainly not been boring, despite the fact that I spend long hours working alone in a room.

One thing I can share involves my discovery of my PV (polycythemia vera), which is a rare, chronic blood cancer that is part of a group of blood cancers called myeloproliferative neoplasms (MPNs). A little over 10 years ago, I was working on a big ‘event’ book, which had a massive workload, and tight deadlines. I had always worked long hours, but I was suddenly tired all of the time, and my brain felt foggy and unfocused. I remember putting my head down on the drawing board, just to rest for a minute, and waking up hours later and further behind on my deadlines. I ended up being unable to finish the project by myself, and we had to bring in another artist to help out on the final few issues.

I had never missed deadlines like that before, and the exhaustion and fatigue were pointing toward a problem that did not get diagnosed until I finally went for a physical. The doctor noticed something was wrong when it took an inordinate amount of time to extract a vial of blood from my vein. I was sent to a hematologist who diagnosed me with PV and confirmed that diagnosis with a bone marrow biopsy.

I had thought that I was exhausted just from my heavy workload, but the fatigue turned out to be a strong indicator that something else was amiss.

Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?

I’m sure that I’ve made tons of mistakes in trying to figure out how to do this job well, but one story that comes to mind is when I was contracted to do a cover for the comic version of the film, SNAKES ON A PLANE. I always start with sketches, so I did any number of variations of a possible cover featuring the film’s star and producer, Samuel L. Jackson, along with the snakes and plane mentioned in the film’s title. Most were film poster type montages featuring some variation of these three essential elements.

The problem was that there were three or four different people who were acting as editors. Each wanted to have something to say about the cover. First, I was asked to lose the plane. Really? Are you sure? Yep. Next, someone got the great idea that we didn’t need the snakes on the cover, either! That makes no sense. The film’s title says it all. But that’s what they wanted, so I acquiesced. By the time they were done, all I had left was a drawing of Mr. Jackson’s character holding a gun.

Months later, when I was at a large comic book convention in San Diego, the “editors” came and collected me from my table so I could witness them revealing the printed comic to Mr. Jackson. Upon seeing the cover, his predictable response was, “That is a very nice drawing of me…but where are the snakes? Where’s the plane?” Exactly! I felt like an idiot for not fighting harder for what I knew was the right way to go in the first place.

Can you describe how you or your organization is making a significant social impact?

I didn’t expect to be diagnosed with PV, but going through the experience made me realize how rare diseases are often overlooked because many people don’t know much about them. Those affected, including the estimated 200,000 individuals in the United States living with an MPN, often face a long and frustrating road to diagnosis with difficulties accessing the information, resources and support needed to cope with their disease. Raising awareness and educating others about rare diseases is critical to helping improve the lives of individuals and families affected by these conditions.

Through Rare Reflections: MPNs Unmasked, I’m raising awareness of MPNs by bringing to life the powerful and personal experiences of individuals impacted by these diseases, including my own journey, through illustrations. Art has the amazing ability to connect the viewer to the subject beyond the surface. I’m using graphic art to bring to life the unique stories of individuals impacted by MPNs and I am trying to provide this community with the national attention they need and deserve.

Awareness is crucial and knowledge is power, and I’m thrilled to use my art to shine a light on these individuals and their resilience.

Can you tell us a story about a particular individual who was impacted or helped by your cause?

I have heard from a number of people since I began this project, people who have been interested in the stories and informed about MPNs. I have even discovered other people in the comics community who are dealing with their own MPN journeys.

I had someone approach me at a convention who told me, “I’m a fan of your work, and I read about your PV in an interview. I just found out that I have PV, too!” I have since become friends with this wonderful person, and we talk regularly to keep up with how things are going, and how life is going for each of us.

Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?

Every person in the MPN and rare disease community has the power to 1) impact 2) inform and 3) inspire others. By sharing your story, you are helping the rare disease community find its voice, feel heard and deepen understanding of conditions like MPNs. The more people are aware of what you are going through, the more they can help.

How do you define “Leadership”? Can you explain what you mean or give an example?

A leader is someone who motivates and brings others along to achieve a shared goal. It’s not pandering to preconceptions or seeking sycophants, but bringing people together to work toward a useful outcome.

I think of someone like Joanna I of Naples, who fought her entire life not only for her right to govern her realm but to keep it independent of the political and religious powers that wanted to swallow it up.

Or perhaps someone like Al Smith, the former governor of NY, who grew up poor, without a high school education, but rose to the NY State Legislature, where, after the Triangle Shirt-waist Fire, he spearheaded an overhaul of labor and workplace safety laws. He went on to serve a number of terms as governor and even ran for President.

What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.

1. Be your own health advocate: When dealing with a rare disease, it is not uncommon to be misdiagnosed, which is what happened to me. Before I was diagnosed, during pre-operative bloodwork for a surgery in 2009, a doctor noticed my blood counts were elevated. While this could have been a sign of several conditions, we moved forward with the surgery anyway. Before you visit your doctor, I recommend that you do your own research about specific concerns you might have and have a list of questions prepared to discuss during your appointment.

2. Educate yourself: After my diagnosis, I immediately began to educate myself about MPNs, which helped me to take an active role in the management of my disease. Educating myself about this disease through trusted resources like www.VoicesofMPN.com and going to doctors’ appointments prepared has made the biggest difference in my disease journey.

3. Listen to your body: One challenging part of this disease is that some symptoms are common in other diseases or associated with aging. In my case, even though I was consistently experiencing symptoms — such as light headedness and extreme fatigue — I chalked them up to working too hard and working late hours. I now know from experience that if your body is trying to tell you something, listen to it. Because progressive diseases may worsen over time, it’s especially important to track your symptoms, as it can help you and your doctor identify subtle changes in your condition. I found this vital when my PV progressed into myelofibrosis (MF), another type of MPN.

4. Find a support system: Living with a rare disease can be isolating because it’s easy to feel that no one truly understands what you’re going through. Finding online support groups really helped. Now, not only do I have the support and comfort from my wife, but I have friends online all over the world who are going through something similar. We share information and experiences, which is hugely helpful.

5. Stay positive: When you are living with a rare disease, it’s inevitable that your journey will be filled with ups and downs. You are going to experience a range of emotions and even on the worst days, I encourage other individuals living with an MPN or rare disease to live their life to the fullest, regardless of constraints they may have. While on this journey, the most important thing you can do is stay positive and stay informed. Live your best life, and always remember you are more than your disease.

You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂

I’m not a cheerleader, that’s not my style, but I’d like to see people learn to trust in science and evidence, not ideologies and superstitions, whether ancient or culled from internet disinformation. I love Isaac Asimov’s quote: “Anti-intellectualism has been a constant thread winding its way through our cultural life, nurtured by the false notion that democracy means that ‘my ignorance is just as good as your knowledge.’”

Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?

“Get up and keep going” has been my mantra almost all of my life and having an MPN has not changed that. Although it has been one of my life’s biggest challenges, I make a point to grow from it each day. This journey has shifted my perspective on life a bit — I’ve decided to stop putting things off and to get rid of the narrative that something can wait to be done another day.

For example, around the time of my myelofibrosis diagnosis, I wanted to begin oil painting again, something I put aside for most of my career in comics. I decided I had to stop putting it off for another day. I did research in painting “clean” without all of the toxic paints and solvents. My wife, Dawn, who’s my biggest support, helped me reorganize the house to add an oil painting studio. I have also started work on a graphic novel that I had been playing around with for years. Time is finite and not to be wasted — I threw myself back into all the things that I wanted to do for so long but had put on the back burner.

No matter what journey you’re on, it’s important to take life one day at a time. While there have been speed bumps in the road, I’ve been working in the comic book industry for about 25 years, and I’m looking forward to continuing to create stories for 25 more.

Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂

Hmmm. I’d probably say I’d like to chew Tom Waits’ ear and hear how he approaches song writing. He creates such vivid, evocative stories in the vehicle of a three- or four-minute song. I’d love to have him soundtrack my next graphic novel.

How can our readers follow you on social media?

You can follow my Twitter at @JG_Jonesfanpage and my Facebook at @JGJonesArt.

You can also learn more about Rare Reflections: MPNs Unmasked and view my illustrations at www.VoicesofMPN.com/RareReflections.

This was very meaningful, thank you so much. We wish you only continued success on your great work!