On a trip to Atlanta for the Decatur Book Festival, I was about to appear on a panel when a lovely woman came runnng up to me, radiating light and warmth. She felt as if she knew me through my books, and I felt as if I knew her well just minutes after meeting her. I've been helping Deva Joy edit her book about the nature of grief which she wrote based on years of work as a therapist and her own experiences . Here I interview her about her struggles with and triumph over Rheumatoid Arthritis or "Arthur" as she calls it.
FLB: What would you say to someone who is just diagnosed with "Arthur?"
DJG: Be patient with yourself as your self-identity slowly shifts to incorporate the diagnosis and pathways of treatment into your life. Often once diagnosed, it allows for spiraling through the various grief stages of denial, bargaining, anger, sadness and acceptance. It is not a linear path and these feelings arise like waves. In time, it can be relieving to have a diagnosis so you can learn as much as possible about what you are struggling with, and learn about allopathic treatments and alternative ways of healing that are outside of the allopathic box. Remember, it is not your fault that you have this... And the more you take responsibility for treating it and learning to listen to your body, vs. just following doctors' advice, the more empowered you can be. Eventually this diagnosis will be part of your path of transformation and personal growth.
FLB: How do you live with so much pain and impact from “Arthur” and still radiate so much joy?
DJG: People ask me this question often. I don't know what part of living with joy is just plain good old biochemistry as well as a touch of grace and what part of it is intentional. I know that I learned early in my life to focus on the gifts of life that aren't taken away by "Arthur." I also knew to focus on the love and beauty and sweetness of life, no matter what was happening in my body. And to allow Nature to nurture my spirit. In Nature, you can witness birth, sustenance, decay and death in the same forest at the same time. It is the same in my own body. This is just life. So, why make it so personal? I don't ever want anything to get in the way of my ability to love the people and animals in my life, and simply loving the journey of life. Nothing. Not even disease and pain. Not that it's easy. Pain is pain and it is by no means fun. But our spirits don't stop loving even though we are in pain. My commitment to loving life radiates from my spirit, no matter what my body is going through ~~ and I have learned to embrace what is occurring in my body as part of my journey of life, offering me challenges and opportunities for me to love into.
FLB: How do you deal with the limitations that come from living with Arthur? And the challenges that come when you are diagnosed as a child and can’t be like other kids?
DJG: It's been a long path of wrestling and surrendering into those limitations. At first, I couldn't walk or lift my arms to brush my own hair. I needed help to dress. I lived a very different life than kids my age and I couldn't hide it. At times, I tried to hide how much medicine I took. I learned that the more I hid, the more shame there was. My deliverance out of the shame was the realization that hiding hurt me more than even "Arthur" and my longing was to be authentically me everywhere in my life. I needed to do the opposite from hiding my special needs and limitations. I needed to find the courage to put it out there for all to know and see. This was a turning point for me after four years of embarrassment about being sick and different. This "coming out" became part of my foundation of my self-esteem that could not be taken away by anyone, no matter how people respond. Because once I got real with what was happening in my body, there was no shame. It just is what is so and what is on my plate to deal with, just like other people have other things to deal with. Sometimes I still have to burn through not being what others can do, for example, in a work out class or a long hike. I breathe through it and allow for the burning -- because this is a way higher option than trying to override my limits and possibly hurt myself. Living with limits is not such a bad thing when we focus on what we can do rather than what we can't.
FLB: When people notice you have arthritis, what arises for you and how do you respond?
DJG: Now, I feel shameless. It was not always like that. I am fine with when someone notices because I feel seen. It used to be such a private, intimate relationship. When someone notices and says something, it goes like this inside of myself, "Yes, I live with this. Yes, it is not so pretty. Yes, it makes things hard. Actually there is a lot more of Arthur than you can notice. But at least you can see some of what I am dealing with. I open to receive your tender compassion. And I know you look at these hands, and think to yourself that you are grateful they are not yours. That doesn't bother me. I am glad for you to use this moment as an opportunity to feel grateful." That's how it is for me now. It has taken years to not identify with the deformities of my body, so now I feel free.
FLB: How do you maintain a positive relationship with a challenging disease that will be with you for the rest of your life?
DJG: The word that stands out for me in this question is "relationship." Being in relationship is, in and of itself, positive, no matter how it feels at times. And as with any relationship, there are ups and downs, negatives and positives -- depending on the interactions and the lens of perceptions... Arthur is no different. It is true that I did not want this relationship and it is one of surrendering... but right there is a "positive" gift of Arthur ~~ Surrendering into body challenges early in a lifetime really teaches surrender on a deep soul level -- what an intimate teacher Arthur is!
I deal with Osteoarthritis or "O'Arthur" as Deva calls it (using yoga, exercise, tumeric supplements, fish oil, an alkaline diet and physical therapy) and so this is especially meaningful to me. Thank you, Deva!