Last December, I ran a Holiday Program for a group of wonderful GPers. One of the participants posted a message on our forum that resonated so deeply with me, I asked her if I could share it on this blog. She asked to edit it for a public audience and what she sent back was this poetic and thought-provoking piece on living (well!) with gastroparesis. Enjoy…
Like Dorothy in the 1939 film The Wizard of Oz our fates land us in foreign territory. I have Gastroparesis (GP) a stomach motility disorder that translates as chronic slow, irregular digestion and ensuing endocrine problems. Such has been so since age 35, beginning in August of 2009. My GP is of the idiopathic variety, meaning we don’t know the “cause.”
Like Dorothy, when I landed here, I struggled and wanted to go back (home). “Home” describes the physical environment and, more intimately and immediately, the bodies we live in. What a life changer GP has been – uninvited and moved right in. Yet, what is “change,” but part of the life obstacle course we navigate in all its splendor and surprise? I don’t like this particular surprise of the physical body, but that isn’t much the point.
The point really becomes how do I live well in this home? At first I refused and continued to eat, drink and live as if I didn’t have GP, the message to body being one of disrespect and avoidance – “I hate this place, I’m outta here.” Now, I am trying to assemble a scarecrow, lion and tin man, so to speak, and use these skills of brain, courage and heart to live well in this terrain.
Having GP has radically changed my life, from how I look to my outlook. I used to run, eat lots of raw fruits and vegetables, be full-figured, drink alcohol, identify as “a foodie,” eat a lot of ethnic, spicy and adventurous food, cook and bake and host dinners, explore bakeries and restaurants for fun, work with raw produce for a living, collect cookbooks and recipes, digest food easily, quickly and without thought, eat for sustenance and emotional comfort, i.e. out of sadness, doubt, joy, anxiety, boredom, angst, procrastination and celebration.
Sometimes people now say to me, “you wouldn’t know what being overweight is like, you are thin.” I feel like Steve Martin in the film The Jerk (1979). Martin is adopted by an African American sharecropping family, and identifies as black, so when people refer to him as “white” which he so obviously is, he becomes confused and stammers. Like Martin in the film, I still think of myself as someone different than I look to be, adjusting to this new place. I am still this chubby kid, then overweight teen, or more recently and more healthfully the full-figured jogger.
I used to not have physical limitations. Oh well. How long can that last, really? As a teen I thought parts of my body not looking how I wanted was a limitation. This brought me real quantifiable distress at the time. If and when one develops a physical limitation, one is given the opportunity to be spared the weight of the unrelenting demands for unattainable superficial presentations of the outer physical body. Honestly, I don’t remember the last time I experienced that old familiar greedy ache to “have a different nose or legs” or for “a more beautiful face,” etc.
Michael Meade in the November 2011 issue of The Sun says, “There are some things that constrain our lives, that limit us somehow, whether it be a family history, a genetic predisposition, a specific fault, or an omission that wounds us. …I call these limits that we did not choose, but that we must live with, ‘fate.’ When we face our fate, we find our destiny, which is our soul’s destination in life. That which limits us has within it the seeds of that which helps us transcend our limitations. Through the exact twists of fate we find our unique soul.
The GP diet is restricted and when I veer from it – when I eat too much, or too many things that are not tolerated by the new moody CEO in my tummy – I pay the price. I know this and sometimes I find myself in rebellion. I am learning. One thing I work on is bringing my “new normal” relationship with food back to one of just sustenance, as with GP you want every calorie to count, so looking at food as a practical matter is best. Yet, food is so much more than sustenance. We imbibe for comfort, for continuity, out of ritual, connection, and adventure, to show and share love and as social currency.
In the western world, many of us live in a reality of too much food and we obsess and fetishize over it – searching for peace. Sure, I miss pizza, French fries, red wine and whiskey, but I am still I, a “me of many things.” Perhaps GP is a way to focus on other life aspects and to simplify.
I guess the lesson from Dorothy-of-Kansas is wherever you end up, explore a bit. What is the lore of the new territory?
Speaking of fortunetellers, wizards and friends, if I may: advice about alternative diets and remedies from people who do not know anything about one’s condition is on-going and can be difficult. I now notice how people do this – this constant, often ill-informed advice thing when speaking to anyone with a health condition. Did you try this diet/alternative treatment – it helped my Uncle Bob? Maybe you have fill-in-the-blank. People are trying “to help” – even while they are not really being helpful.
We get uncomfortable around what we don’t understand, what we can’t fix leading to doubt and fear, so we go into “advice” mode. (Giving) advice can feel like momentum against The Unknown I guess. We have such clumsy ways of loving one another, of trying to protect ourselves. Best to smile, know they mean well, say thank you and change the subject. Also, notice that when one is in new territory, you notice. This is a gift. I had never seen known this phenomenon before and now I am better able to be by someone’s side that is unwell with empathy and without “answers and tips.”
Before GP I suppose my life was more about how much I could do – my ambition. The ego has so many places it wants to go; it is really a desperate critter. It is a lifelong process to do good work and yet keep the ego in check. It is hard to believe you are doing good work, when you are not doing lots and lots. And yet… Viktor Frankl, an Austrian neurologist, psychiatrist and concentration camp survivor spoke much about the importance of meaning making in our human lives. Frankl said, “Each man is questioned by life; and he can only answer to life by answering for his own life; to life he can only respond by being responsible.”
Sometimes, when I am “questioned” by life I just want to throw a tantrum – I am five years old somewhere, all the time. Sometimes, it is too hard and I seek to numb my pain. And yet, we need only to be responsible. Our work – our jobs, ourselves – starts as what we dream about when we are young and becomes what we build upon in middle age – what we hold on to as we age; finally constituting what we remember in old age. There is an existential pressure and pace to this.
GP was a cue to action for me to change occupations and physical environments. I had considered going back to school in my early 30s, but history teaches us we need catalysts. I re-grouped. I quit an excellent job and moved to an unfamiliar city/state to enroll in University as full-time master’s degree student. I am now studying healthy aging – gerontology, whereas before I was in marketing, working with fresh fruits and vegetables. We must re-group in life; have interventions of the self and in doing so, by acting through the anxiety “as if” we can so much more is within than one could have imagined.
The adventure of moving to a new location to attend college was a creative boost. In my old home and subsequent life I was struggling against not being the “old me.” In a way moving to attend school was a chance to alone for a while, like the academic and religious traditions of living as a hermit for a spell and then “returning.” This new, unfamiliar environment has been a gift – a new canvas. All we can do is honor where we “land,” have a look around, grab that makeshift compass, and trust.
Yet, as my grandmother says, wherever you go there you are and yes, my struggles – the ups and downs, are here too. In life, when we get unwell – we need to go inside for a while. As soon as we experience any kind of spring bloom it is time to prop up on the elbows, cultivate the giggle and get on with it somehow which creates its own momentum.
Suffering is inevitable but we, as survivors of our lives, have so much to offer. So much has been offered to us. Dostoevsky writes about “being worthy of one’s sufferings.” We are all alone and yet we are connected to each other in a way that is as mundane as it is divine. We leave and return “home.” Our bodies and communities exist in always shifting realities. We must take care.
The Buddha said, “The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.” What this says to me is to put on those Ruby Slippers, sister, and dress up a bit, as there is no place – for better or worse, in sickness and in health – like this (body)…like home.