Interview Conducted by Samantha Barrett
Judi Riley is one of our fabulous Facebook community members. When we got word of her books with the incredible images that accompanied them, we knew we had to interview her. Judi, who has had CRPS since May of 2009, is an author, illustrator, graphic designer, artist, and mom who is conquering life with RSD or CRPS. After an introductions, Judi and I exchanged emails for this interview. Say “Aloha” to Judi, everyone!
Samantha Barrett: You write and illustrate children’s books, which is amazing! What inspired you to do that?
Judi Riley: I’ve always been a storyteller and for as long as I can remember, I have doodled pictures to go with my stories. My dad always encouraged me to publish my stories with my art.
SB: Out of all of the books that you have written/illustrated, which is your favorite and why?
JR: It is very tough to pick just one favorite! Every book is like creating and birthing a child, and reminds me of a period in my life. Right now, I am deep in a creative bubble while I work on a series of three books and I am completely in love with them.
SB: If you had unlimited resources, what would you write and illustrate a book about?
JR: What a luxury it would be to dedicate all of my time to just writing and illustrating! 98% of my writing happens away from my desk… through my life experiences, reflection and a quiet space where I dream up the unimaginable. With unlimited resources, I would travel around the world with my 9 year old (who is also a writer and artist, and who hasn’t left Hawaii since he was 2) and we would dream up stories based on our adventure. We would make an excellent writing team!
SB: That is so sweet. Does RSD/CRPS affect your ability to write/illustrate? How have you adapted?
JR: After a bilateral crush injury to both arms in 2009, I lost sensation in my fingers (my hands were like wood) and my arms were perpetually burning up with nerve pain, which I later learned was RSD. My fine motor skills were compromised and I didn’t think I would ever be able to paint again. Like many RSD warriors, I was misdiagnosed for several years, and consequently didn’t get the supports or treatment I needed to break the pain cycle. I didn’t sleep for more than an hour a night and I was in a constant brain fog. It was challenging to think, and thus impossible to write. Writing and art had always been my oasis and the further I fell into a dark abyss of chronic nerve pain, the further I fell away from my art and anything light. It is impossible to imagine RSD pain unless you have lived it. If you have ever needed a root canal, then you have tasted nerve pain, but you can never know RSD nerve pain. Imagine the sore you feel from cold hitting your exposed tooth root, but crank it up even higher. Like 10 times higher. Now imagine it is in your limbs and it never stops. Never. RSD never stops. Never. Not one second. I bring up the root canal analogy because my pre-RSD self used to think that it was the worst pain imaginable. Recently, my post-RSD self went to the dentist for a root canal and fell asleep in the dentist chair during a three hour procedure. It was nothing. A mosquito in my ear. The kind of continuous nerve pain that RSD brings is the kind of pain that breaks you. On the McGill pain scale, RSD pain is rated above childbirth. How can you function with pain that high? You can’t. I nearly gave up many times. In those sleep-deprived, darkest nights of abysmal, searing hot nerve pain, it would hurt to move. It hurt to breathe. During those nights. I would sometimes lie very still on the cool floor with my arms folded across my chest, and in that coffin position. I would imagine leaving my body. One of my favorite things has always been the warmth of the sun, but I remember absolutely hating the sun back then. The rising sun of a new day meant that not only did I have to move my body, but I also needed to carry the weight of it through my life. RSD very nearly took all of me. Did I write? Did I illustrate? Brushing my teeth was a huge accomplishment. But I refused to give up, and I was determined to find a cure. I didn’t listen to the doctors who told me there was nothing more that could be done. Instead, I searched for the right doctor and eventually found one who changed my life. After listening to my symptoms, she sat next to me with a posture that suggested she needed to break the worst news possible. I’ll never forget that day or how she looked at me. Until that moment, I had been free falling for 3 unimaginable years in a dark abyss of infinite pan and then with a dull thud, in that moment she gave me a diagnosis. I touched the bottom. Finally, someone knew what was wrong with me. Not only did she give my disease a name, but she also prepared me for the weight of what the news was going to bring to my life. Finding out that I had an incurable, degenerative disease of my sympathetic nervous system was devastating, but not nearly as devastating as knowing that I had suffered unnecessarily for 3 long years because I was misdiagnosed. A string of doctors had told me over and over that there was nothing more that could be done, when in fact there was lots to be done. This new physician cracked open a world of possibilities and was absolutely determined to bring my pain to a manageable level. RSD is nicknamed the suicide disease. A few months after we met, when I was doing infinitely better, she told me that right before she met me, she lost an RSD patient to suicide. When I first walked into her office, she knew as soon as she saw me that I had RSD and she was going to make sure that this disease wouldn’t take me. I never told her I was suicidal. But she knew. I did not want end my life, but I no longer wanted to be in my body. You cannot carry continuous, immeasurable pain without wanting to leave your body, and she knew that. She reached into the abyss, grabbed on, and wouldn’t let go. She surrounded me with a life force of supports. She taught me that nerves have memory, that we could retrain mine, and that it was going to be the hardest work of my life. She taught me that the sympathetic nervous system by its very nature is designed to override every treatment. Over months and months, she dragged me from the darkness and into the light. Before RSD, I was fearless and had always lived without boundaries. I was a free spirit and knew I could do anything I set my mind to doing. After RSD, I had to relearn the idea of living without boundaries. The physician taught me to dig deep to find ways to adapt to my new life. I researched many, many ways to find new ways of doing things that used to be so easy for me. Many technologies exist today that help me write and illustrate, which brings me to the next question…
SB: Wow! Can you tell us about your new book?
JR: My new book is called “The Original MerKINS: A Field Journal.” It is a book that almost didn’t happen. It definitely could not have happened without the healers and doctors who have kept me in the light these last few years. (You’ll find some of them on the attached dedication page). For the last four years, I have been learning how to illustrate using my computer instead of painting. I am very tactile and love mixing and blending colors, and watching my art come to life. Drawing on a black tablet with my wooden hands and staring into a 
computer monitor was nothing compared to painting. But, I learned to love it, thanks to an unexpected gift from a friend on Kaua’i. Last year, she gifted me a Great Dane puppy. I lost my Dane a few years ago and didn’t think I could handle training a puppy, but she knew more than I did that I needed him. One of the best tips I ever received (from the doctor who gave me the RSD diagnosis) was to keep in motion. It is too easy to stay in the pain posture (hunched inward, shoulders rolled forward, chin down) which brings on more pain. She encouraged me to walk with purpose with my shoulders back and chin up, and to swing my arms consciously left, right, left. I went from fearlessly windsurfing giant ocean waves in 30 knots of wind to… walking. Exciting, right? Until last year, I avoided the beach because it made me sad and reminded me of my life before RSD. My new puppy got me excited about walking, but walking around town on the hard surfaced sidewalks set my feet on fire. So, I ended up taking him to the beach where I could walk barefoot in the warm, soft sand. We walk and swim about 5 miles a day now. I mention the walking because it was on our daily beach walks that I found inspiration for my new book. Walking is still painful, but the beach has become a safe haven where I can push through the pain, clear my head, and feel the sun, which I am once again madly in love with. My new book is about a “Merologist” who falls into an underwater world called “MerKingdom,” where she meets a series of sea friends (MerKINS) who are animals with mermaid tails, like “MerIggy,” a pig with a mertail, and “MerLar Bear,” a polar bear with a mertail. The book is actually the story of my battle with RSD and all of the characters are based on real people in my life. The first MerKIN who we meet is MerLaLa, a mertailed koala, who is really my friend Lady LaLa, who helped save my life when she gifted me my new puppy. And since I know you will ask, MerCess, a brightly colored horse who draws with her octopus-like tentacled mane, is me. Disappearing into MerKingdom is what has brought me the greatest healing. There have been many times that I wanted to give up. I still have what I call Lost Days, days when the pain is too great to do much of anything. Drawing and typing can flare up my RSD, but sometimes RSD pain comes out of nowhere without any triggers at all. MerKingdom gave me a place to disappear into and took my mind away from the pain. Dreaming up MerKINS gave me something interesting to draw and transformed drawing on a boring black tablet into a magical experience. I chose to format the book in a shabby chic, scrapbook style so the imperfections of my drawings would be hidden and seem intentional. I chose to tell the story in a journal style, so that I could work on any pages at any time, even in an RSD brain fog, because I didn’t need to remember where I left off. It is easily the most challenging book I have ever made, but it is also very easily the best work of my life. I received my advanced printed copy of my new book just last week and as I turned each page, I was absolutely overwhelmed with the magnitude of what I had done. I create the impossible. If I can do this, you can do anything.
SB: That is absolutely incredible. I love that you used it to tell your story. How have you used your talent to cope with CRPS related pain?
JR: My greatest gifts have always been my imagination, my creativity, my humor, and my stubbornness. I draw on all of these gifts to battle RSD. I definitely lean on my ability to think out of the box to figure out how to do things that RSD makes challenging. I am also hugely curious. I research and I listen to advice, but ultimately, I figure out what works for me. I will try anything, even if it seems crazy. Well, maybe, especially if it seems crazy. Another tip one of my healers taught me to do was smile, even if I am having a Lost Day. The chemicals released into your bloodstream during a fake smile are identical to authentic smiles. I remember hating on life so much, but smiling anyway. The absurdity of it! But, I tried it and it actually worked. Day after day. Stupid arm swinging walking and fake smiling. For me, I needed to draw upon all of my talents to heal my spirit and create enough light to see me through my darkest of days, and return me to the place of knowing I can do anything. We are all limitless.
SB: What would you say to someone who stopped pursuing their interests because of CRPS?
JR: There is a great deal of mourning that needs to be done because the life you had before RSD is gone. It’s a death of sorts. But, that doesn’t mean that you cannot have a full life. RSD is just ONE part of you. It is not the entirety of your Self. You may never have another pain-free day, but the line between manageable pain and unbearable pain is a very, very fine line. Once you have crossed over that manageable pain line and RSD is screaming, the greatest challenge is in knowing that manageable pain is attainable again. It’s important to keep a pain journal because you will need to be reminded of your gifts and all of the things that you can do when your pain is turned down. Every single day, even on Lost Days, you must find one thing that you are really good at so that other parts of you can shine. You must also create wins because RSD brings many, many losses. Whether the win is real or an illusion, you must find a win that gives you happy chemicals to keep fighting. For me, I am freakishly good at Scrabble and so I play online on my phone. Winning is a mindset. Small victories lead to big victories. Winning at Scrabble leads to getting a book done. No matter how challenging, you also need to find a way to reclaim your hobbies. I can no longer draw with a pen, but I can draw with a tablet. Sometimes, I draw the same line over and over again because the picture in my head and the one that is coming out of my hand are entirely disconnected. But, if I keep at it, I will come close. And some days, that needs to be good enough because it beats not drawing at all. Believing that you can do it is more than half of the battle. I believe that one day I will be able to windsurf again. It’s a crazy belief, but it gives me hope, and hope keeps me in the light.
SB: What advice would you give to someone that wanted to write and/or illustrate children’s books?
JR: What are you waiting for? Just do it. It is really just that simple. Don’t research the thousand and one ways to make a book. Write your book and when it is done, it will take on a life of its own. Your Creative self cannot be bogged down by worries like how do you print a book, and how do you market a book. Since I publish my own books, many people contact me and ask me how to print a book. I’ve learned to ask them one question: have you written your book? In most cases, they have not. Instead of writing their book, they’re trying to figure out how to get an ISBN# for a book that doesn’t even exist. Just do it. It’s truly that simple. Many people have ideas for kids books. An idea is nothing. I have new ideas for kids books all day long0 when I brush my teeth in the morning, when I am climbing into my truck, when I am washing my dishes. It is very easy to come up with ideas for kids books. Finish a book takes blood. It takes all of you. Don’t tell someone who has written a book that you have an idea for a book. Write. Your. Book.
SB: Where can we find your books?
My new book is getting printed right now! It is setting sail from Hong Kong on November 17 and will arrive in Hawaii in December. You will eventually be able to find it at books stores, but for now you can order a first edition, signed, hardcover through my IloveMerKINS.com website (click here). You can also download my ebooks on iTunes and at Amazon, just search for “Judi Riley.” My best selling book is called, “When I Am Quiet on Maui.” Thank you for giving me feathers for my artist wings, which brings me to AerKINS (book two in my new series) another scrapbook styled journal about the power of dreams and features animals with wings, like AerOth, a winged sloth, and AerGer, a winged tiger.
SB: That sounds so cute. Thank you for interviewing with us. Any last words for the RSDSA community?
JR: First, do not listen to the doctors who say there is nothing left to be done. Find a different doctor. Second, be flexible. What works today may stop working without reason. Right now, my treatment plan includes regular stellate ganglion blocks, a cocktail of medications, exercise, pilates, and lots of love. Third, smile every day, even if it is fake. Claw onto your sense of humor and never let it go because you will need it on your darkest days. Fourth, cry. Sometimes, you need to release all of that you are carrying. It doesn’t make you weak. Finally, know that you are limitless. And your very best days are still ahead of you.
Thank you, Judi, for taking the time to be interviewed. Judi just announced all of her books are $0.99 for the month of November in the iTunes store, so be sure to pick them up while you can!
You can see her livestream every morning on Periscope by following @TikiTales and you can see her adventures chronicled on Instagram by following @TikiTales there as well!
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