An Illness Saved My Life

by Kilaya Ciriello of the KILAYACIRIELLO blog.

 

I didn’t really have much more than I could squeeze into my Ford Aerostar Cargo minivan when I decided to up and move from New York City to Los Angeles in 1998. I was a fine art painter with a basement art studio in the Hell’s Kitchen neighborhood and running a small renovations company to pay the bills. All I had to take to LA were some construction tools, my oil paints/brushes and a few canvases I was working on at the time. I was already in the mist of major personal shifts since quitting drinking 4 years prior. I knew I had a very dark New York soul and thought that LA would further the process of transforming the ocean of anger within, into light and positivity. I didn’t know much about LA, of course, just a feeling that it was the right time and place to make the move in order to further this inner work.

Unfortunately the move itself didn’t shift too much. I started living the same life I had been living in New York City but now it was happening in Los Angeles. I found a painter’s studio in Culver City, started a new construction company, met a girl and bought a house with her in the Venice neighborhood. And of course, I started surfing every morning before work. Externally it was all great but inside darkness was still seething and causing great internal discontent. I probably would have forcibly kept a lid on all that internal crap if I could have but my soul had other plans.

Towards the end of a major renovation of the house I was to move into with my girlfriend I caught what I thought was a nasty flu. After five days in bed, however, I sensed that something was different about this illness. After about a month I forced myself out of my bed to go finish the renovation. Financially we had to move into that house soon so that we could consolidate our individual rents into the mortgage payment. Working construction with the flu was not totally strange to me but something was really different this time. I was physically weak but in addition I couldn’t think clearly. My mind wouldn’t concentrate. I cut off half a finger nail on a planer and then nailed a different finger to a wood board. Luckily neither injury was anything a gauze bandage and some duct tape couldn’t take care of. But clearly my brain wasn’t working well.

The renovation was completed, we moved in and I started a 3 year process of going to doctors and trying every type of treatment I could find for my extended “flu.” After many doctors trying every type of drug they could think of, I was still sick. One doctor finally sent me to 3 months of psychotherapy, insisting it was all in my head. The psychologist couldn’t find anything wrong either.

It took over a year for me to get diagnosed with CFS or Chronic Fatigue Syndrome. CFS isn’t clearly understood, they told me, and there’s no known cure. People just live with it, they told me, the rest of their lives. (I have met people since then who have suffered with it for 20+ years). Well, a part of me said No Way! to all that. I couldn’t imagine living even another year with this disease much less the rest of my life. That kind of life just didn’t seem worth living, I felt. I felt resolved to do whatever it took to get better.

CFS is like 24 hours of torture, I tell people today, looking back. Having no physical energy is not the worst of it. Not being about to think clearly (I couldn’t read a book or watch TV without my head spinning out of control in confusion) wasn’t the worst either. The night sweats were bad (waking up every 2 hours every night soaked in sweat) but weren’t completely unmanageable. It was the psychological torture of getting better slowly for a few weeks and then suddenly, unpredictably, having a “relapse” that would gradually get worse for 1-2 months before starting the cycle over again. This was maddening and depressing beyond what is manageable because every time I started to feel better my hopes for recovery would slowly build only to be dashed to the ground by a totally random “relapse.” Psychologically this cycle was crushing my soul.

In my search for a cure or even some relief I started exploring every alternative healing modality I could find. Many of them provided some relief initially, building my hopes once more, only to lead to a crushing “relapse” over again. All that changed however when I stumbled upon a book written by a CFS sufferer in England. He described his experiences following a specific juicing-based detoxification diet. All his symptoms matched mine perfectly and his enthusiasm for this diet regime was convincing.

It took me one year from first learning about the Gerson Therapy (www.gerson.org) to actually start it. In that year I researched its claims from every angle including visiting their headquarters in San Diego. I poured over huge texts on biochemistry trying to verify their claims with the already accepted science. Additionally I worked as much construction as I could to save up the amount of money I needed to do the Therapy. The Gerson Therapy doesn’t cost anything outside the cost of the organic fruits and vegetables that have to be juiced and cooked but you can’t work while doing the Therapy. It itself is a full time, plus, job.

I ended up staying on the Gerson Therapy for a little over a year and in some ways that year was incredibly difficult but all the difficulties were manageable because I started to regain my physical and mental health almost immediately. My girlfiend (now fiancée) was dead set against the program. She thought it was nonsense but she was hoping that when it failed I would finally start working on accepting and living with CFS rather than relentlessly trying to find a cure. That journey of trying many types of healing modalities, for her, had been too much. Our relationship was threadbare. She would come home from work almost every night after I started the Therapy and criticize me and try and convince me to stop the Therapy. But as I regained my health I was able to more easily calm her fears over and over. (I thought I was actually convincing her but it turned out she was just keeping her unhappiness more and more inwardly stored).

I spontaneously started meditating an hour a day after 2 months on the Gerson Therapy. I hadn’t ever even MET anyone who meditated and so, literally knew nothing about it. (There was little to no internet back then!) I ended up finding a meditation group in the Venice phone book but when I called they told me they had no openings in their group! I think back on that and laugh today.

By the third month on the Gerson Therapy I could read reasonably well again and randomly picked a book off my huge bookcase (I had been an avid reader before CFS and had a collection of hundreds of books) to begin what felt like a new life. The book had been given to me by a fellow carpenter years prior and I had dismissed it as not my cup of tea then. I read it quickly and felt like something long hidden was finally coming to the surface: who I really AM! In reading Marlo Morgan’s Mutant Message From DownUnder I recognized a connection to the Earth and indigenous peoples that my upbringing and conditioning had kept hidden. That book led to reading Carlos Castaneda’s Teachings of Don Juan and finally I found the Buddha’s Sutras. They felt like home to me.

When I read the Buddha say that everything in this world is on fire I knew where I wanted to go from then on. I started reading every Buddhist sutra I could find. Less than 2 years after starting the Gerson Therapy I was separated from my fiancée, meditating and practicing Tai Chi every day in the early morning hours before dawn and living in a Buddhist Spiritual Center in Santa Fe, NM. I had found MY path. I had rediscovered the spiritual path, at the point where I had left off in a previous life I believe, and was finally acknowledging and facing the darkness within. I led the life of a Buddhist renunciate for the next 7 years until meeting and starting to travel with my guru, Amma (www.Amma.org). With Her help I can honestly say I have faced that inner darkness with courage and persistence and there are no words to describe my gratitude for being given that opportunity. Thank you, Dr. Max Gerson, whose work gave me another chance in life to do things more in line with my heart and less in line with social conditioning. Thank you, Ammachi, for taking my hand down the profound path of Love.

 

Kilaya Ciriello

“Know Thyself” is a commandment that I have taken to heart. After graduating from Stanford in 1993 with a degree in writing and philosophy I wondered, how could I possibly go about professionally writing anything without first knowing myself. So I started surfing instead. And . . . that led to Yoga . . . which took me to India. And there I studied and traveled with the spiritual leader and humanitarian, Amma, for the past 8 years. After following her instructions and making changes in my behavior and attitude only then did I feel ready to write. I have since self-published three nonfiction books; The Scorpio Ring of Fire, The Bhagavad Gita: In Focusand Love Is In My Mother the Moon on Amazon. On and off I also contribute to my blog, “Spiritual Thought from Many Traditions.”

Blog: KILAYACIRIELLO
Also find on Twitter and  Instagram.

 

Written for the From Darkness to Light event.  If you’d like to be a part of the challenge, find more information Here.   But first, leave a comment and let Kilaya know what you think about his words, and be sure to visit him over at KILAYACIRIELLO when you’re done.

13 Comments

  1. Reading your post was an amazing process for me. As you started describing your symptoms they were so familiar. I had five years dealing with Chronic Fatigue Syndrome. In fact I was writing something about it just before I read your post. It was interesting to learn about how you treated it. Then I got to the part about Mutant Message From Downunder. That is one of my favorite books and I included it in workshops I taught. We also have our relationship with Amma in common and Tai Chi is now an important part of my life!

    Liked by 3 people

    1. I thought we had a few things in common when we met a handfull of years ago! Lol. And you left out the most important one: bhakti Dancing! Ha ha ha

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  2. I can’t tell you how moved I am after reading your story, you are a warrior, Kilaya and your goodness of heart and energy is palpable in your words. I feel many of us take a lot of things for granted in life unaware of the blessings we are bestowed with. Your post inspires me to be more brave and positive. Thank you so much for sharing! ❤️❤️

    Liked by 2 people

    1. That’s heartfelt, thanks. Being of genuine use to one person makes it all worthwhile. At one point of dense darkness I choose to live, to keep going, only on the thought that doing so may be of benefit to even one single person. I didn’t believe that I could be of such benefit ever, at the time, but I knew the effort was worth it even if I failed.

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  3. I admire you for standing up for yourself and not giving up or in to your illness but seeking health. It could not have been easy. It is especially difficult when you have an illness some Doctors don’t even acknowledge. I have fibromyalgia and stay very active but I do tire easily. May God bless you and I agree you are a Warrior!! Thanks for sharing your brave story.

    Liked by 1 person

    1. I feel your pain! Fibromyalgia is often connected to CFS, I believe, but has additional joint pains that I didn’t experience! I am so sorry that you are suffering this! I hope you experience complete recovery soon! I will say prayers.

      Liked by 1 person

      1. Thank you that is very kind. I appreciate your sweet words. I know a lot of men who fought for our Country who are either paralyzed or are missing both their legs. I really try to think of them when I don’t feel well. It isn’t easy but I know that they would trade places with me in a second. Thank you for your prayer I said one for you also. God bless you.

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  4. We’ve traveled with Amma together for a long time, yet I never asked about your past. The human journey never ceases to amaze me. Im so glad you found a way past CFS. I hope that reading your experience will help others who are suffering as well. Thank you for sharing Kilaya.

    Liked by 2 people

    1. Nobody has and I have never offered it. I have been leary of talking about myself, seeing it as an impediment to identifying with the true self but Sreejit’s forum felt right and my heart opened to his invitation.

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  5. I recognize so much of your story. For me, it’s Hashimoto’s…similar symptoms…similar life sentence.

    Thanks for sharing and inspiring me to continue to look for answers when so many health practitioners have told me to learn to live with it!

    Liked by 1 person

    1. I’m a fighter by nature but I totally understand the choice others make to make peace with a condition that seems intractable. My position is that either way is hard and so why not go all out, with a full heart, with a prayer that your experience of the struggle will eventually be useful to others. But I understand that there are other valid ways of seeing it as well.

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