About six years ago I read a book entitled: “The Monks and Me.” It is about a women’s experience at the venerable Thich Nhat Hahn’s Plum Village Monastery in France. Ever since then I have wanted to visit this monastery and spend one week there. I immediately put it on my bucket list in hopes of going there one day.
Like many of those with hereditary cancer syndromes, I have spent the past six years on an enormous physically, emotionally, and spiritually challenging rollercoaster. Prior to my Lynch diagnosis in 2011, never in my wildest dreams did I ever fathom becoming an advocate for those with hereditary cancer syndromes – I wanted to be a teacher.
Following my prophylactic surgeries, my life took enormous, negative and challenging twists, and turns – ones that made me question whether or not they would compromise the quality of my life. I voraciously read Darwin and Buddha’s words for insight – focusing on the survival of the fittest, adaptability to new circumstances, and accepting that my life was going to now be involved in an immeasurable and unimaginable constant state of flux.
Since becoming an advocate for those with Lynch, I have learned a great deal from people – particularly from those who are dying. I always ask them: what precious gems would you like to leave me? Many respond with: “work less, love more, and travel as much as possible.”
I work a lot – in order to ensure that I am providing accurate information to those who read my work on social media platforms; hereditary cancer advocate, Amy Byer Shainman, and President of My Gene Counsel, Ellen Matloff, help me tremendously when needed but the nonprofit ihavelynchsyndrome.org is predominately a one-woman show. I recently recruited 4 amazing women from the Northwestern University genetic counseling program to help with the blog in order to free me up for other advocacy projects.
A Lynch syndrome diagnosis is one colossal mind f*ck. The uncertainty following a diagnosis can be paralyzing – the old adage “knowledge is power” frankly nauseates me – knowledge is power only if it’s actionable. For many people it is not – many people who undergo genetic testing do not understand what their particular mutation means and what they need to do to minimize their cancer risks simply because the do not see a certified genetic counselor. No one advocates for genetic testing for hereditary cancer syndromes more than I and from what I have witness on a daily basis, genetic testing should not be done without the guidance of a certified genetic counselor.
Advocacy is hard work – and it never stops, at least not for me. I wanted to create a space for people that was not available to me when I was diagnosed. I am available to people 24/7 from all over the world. If someone in England or India wants to talk to me at 3am CST then I am there for him or her. I mostly listen and try to help them the best way I can. I try to help, regardless of where they, to find doctors well versed in Lynch syndrome screening protocols, certified genetic counselors if they are available in their country, and get them into clinical trials when everything else has failed them. But mostly, I listen and I always try to end the call on a positive note – hoping to provide them with some glimmer of hope.
Last October I found myself irritable, depressed, and having difficulty coping with simple, everyday tasks. I began started suffering from exhaustion and was diagnosed with compassion fatigue. I had never heard of this before: “Compassion fatigue is a state experienced by those helping people (or animals) in distress; it is an extreme state of tension and preoccupation with the suffering of those being helped to the degree that it can create a secondary traumatic stress for the helper,” according to Dr. Charles Figley Director at the Tulane Traumatology Institute.
My psychotherapist insisted I take an extended break and so I thought to myself that perhaps that this was a stellar time to start working on my bucket list. It was time to go to the Buddhist monastery as I was in dire need of a break. So I sought out the French countryside, away from everything, which is familiar to me, in order to rediscover myself and exhume some of the thoughts which I have buried over the past six years. It was my time for for reflection, reconnection, and reconciliation.
Whilst schlepping my luggage through Amsterdam to my connecting flight to Bordeaux, my luggage became a metaphor for the emotional weight I have been dealing with over the past several years personally and with my advocacy efforts. I dragged it behind me – it was heavy, hard to pull, and exhausting beyond words.
I arrived in Bordeaux in the early morning and took an hour bus ride to the nearest train station to fetch a train to the southwest of France where Plum Village is located. An adorable Irish couple picked me up from the train station and took me on another long ride to my new humble dwelling. The silence of the French countryside was deafening. I opened the door to my little room. It was cold, had two cots, a shelf, and a bathroom area separated by a shower curtain. My cot had pink sheets and a tiny pillow. Little did I know that this chilly and stark room would provide me much needed insight and perspective.
Every day I walked down to the Hamlet – the hall where everyone would gather for meals, talks, meditation, and whatnot. I met an Italian woman by the name of Mirella, I quickly nicknamed her Miri, and she and I bonded quickly. Everyone was there for one reason or another – some were simply interested in learning more about Buddhism and the monastic way of life. But most of us there were having some sort of existential crisis – we were all on various journeys, which would ultimately lead us to the same path.
We spent our days getting up at ungodly hours for meditation – the ten-minute walk to the temple in the cold, foggy dark silence was terrifying. I had only a reflective vest and a little flashlight to protect me from the crazy country drivers. Breakfast soon followed meditation– fresh bread, oatmeal with no sugar, fruits, and nuts were available. Only vegan meals offered and were consumed in noble silence amongst 50 people – most of them nuns. “Noble silence” meant no speaking was allowed. I found this time to be the most fascinating – I often wondered what others were thinking about whilst I obsessed and tried to overcome my unrelenting craving for coffee.
Lunch and dinner were more interesting and filled with unidentifiable foods. My desire for culinary adventures declined as my stomach shrank, more and more, with each passing day. I drank herbal tea all the time and pined for my own coffee. I only ate lemongrass vegetable soup at dinner if I ate at all. We washed our dishes in about 6 different tubs – hygiene was not high on the list of priorities. There I was in the middle of the wine and cheese mecca of the world and I ended up losing 5 pounds within one week.
Time was spent meditating, shelling hazelnuts, taking pictures, harassing the local goats, donkeys, cows, cats, eating plums off of the trees on the property, talking to people from all over the world, lots of walking, devouring books, and taking loads of long, lazy naps. A few of us would occasionally play hooky from Dharma talks and walk miles to neighboring villages to take a peak at the magnificent French countryside views or have a decent cuppa coffee and the forbidden butter laden croissant.
I have not been truly alone for an extended period of time since for over a decade. It wasn’t long before I realized I would make a terrible monastic – I have way too many attachments: I like warmth, coffee, my beloved dog Sid, my family, friends, and my Lynch Facebook family. One week at the monastery for me was enough. I found gratitude for everything and everyone in my life – I tried to think about all the positives in my life and bury the negative. I realized that my compassion fatigue was a good thing as it was a testament to the abyss of empathy I have for others and it has given tremendous insight and purpose into my life. The world would be a far off better place if more people had plenty more of it. After all these years, in the dark, cold, silence of the Buddhist monastery, I eventually found and came home back to myself.
Following my week at the monastery, I eventually made my way to Paris by train in order to meet Madame Diane — the president of the first Lynch syndrome organization in the world. She began in it 1999 after the death of her husband. She does not have Lynch but other members of her family unfortunately do. You can find out more about her foundation here. We spent the evening over a long, Parisian meal discussing the issues she deals with regarding Lynch syndrome in France – we both immediately recognized that we both are dealing with similar challenges. Most clinicians do not have a clue about Lynch syndrome, there is not set protocol for Lynch screening, certified genetic testing is lacking but much-needed, and people are needlessly developing cancer and many are dying because they are not receiving appropriate, meticulous screenings. Same issues, different country.
My trip was much needed and quite enlightening. I have neglected my own needs for a long time. I have to adopt better emotional hygiene practices and so do many other advocates that I know well. We advocates must take time to care for ourselves — otherwise we will suffer from burnout and some of us may abandon our work altogether. There is a lot of work needed to be done for those with hereditary cancer syndromes – the world needs us more than ever right now.
To learn more about compassion fatigue, please click here.
“Rest and self-care are so important. When you take time to replenish your spirit, it allows you to serve others from the overflow. You cannot serve from an empty vessel.” ― Eleanor Brownn
Georgia M. Hurst
Founder and Executive Director of ihavelynchsyndrome.org