Turning Tides, Wind of Change: An Awakening
By Cecilia Del Sol
“I woke up today!”
It is amazing how much good a short affirmative proclamation can do. Many people who suffer from chronic and life threatening illnesses know what a big feat it is just to wake up in the morning. Please know that my joyful shout here is a double entendre. I woke up today. I opened my eyes. Literally and figuratively. Let me tell you a story….
Going on ten years ago, I had just come back from a family vacation out of the country. We were in a warm, sunny place, surrounded by sand and water, where I swam in the ocean with bright and colorful fish, went boating with the breeze in my hair, dried off in the sunshine with good food to eat, surrounded by loved ones. Sorry to see it end, we traveled late at night by plane back to the cold and snow to reintegrate into our everyday reality.
Or so I thought. About a week or two later, out of nowhere, I could barely get out of bed. Couldn’t stand for long. Couldn’t walk without aching. Fraught with pain and fatigue, and the concomitant anxiety of not knowing what was wrong, I did what many people might do and sought medical attention. My primary care physician, whom I like and respect, ran initial tests that yielded a serious conclusion. Aware that my condition was outside her area of expertise, she referred me to a specialist.
I struggle with the anger that still wells up, albeit not as intensely, as it did on the day I met that specialist. Concluding that I was experiencing a different phenomenon altogether after a whopping fifteen minutes, he said “I want you to stop seeing doctors,” and proceeded to expound upon what seemed to me to be a self-aggrandizing one-size-fits-all cookie-cutter lecture about his presumed etiology of my condition. If you are thinking of Darth Vader’s seething line, “I feel your anger,” hissed at his son Luke Skywalker while each one is fighting for the dark and light sides of the Force, you are right. My anger is still a work in progress. For little did that specialist know, that a) unlike people who go through many painstaking years and many practitioners before ascertaining a diagnosis as he appeared to assume I had done, this was only my second appointment for my health concern, and he was only the first specialist I had seen. “Thanks for putting me in your little box without even knowing me,” I thought –loudly; b) apparently the label for the condition this person slapped on me was at that time considered by this individual to have a substantial psychological origin (which was scientifically inaccurate), and this practitioner had expounded on what he believed to be the inner workings of the psyche of his new patient—me, a clinical psychologist! Did this “specialist” know he was talking outside the purview of his field to someone who by virtue of her education and experience had years and years of introspection and self-awareness under her belt?? And c) that what may to him have sounded like an elaborate and cogent theory of illness was just an intellectualized version of the all-too-familiar, “It’s all in your head”?!
At the time I was so very incredulous and angry, but now as I write, I recall my earlier statement:
“I woke up today. I opened my eyes.”
I could no longer take matters lying down. Literally or figuratively. This was a serious diagnosis requiring much more than a 15 minute interview and the provider who was supposed to be competent in my care or cognizant of me as an individual did not appear to be. I was in tremendous pain, my quality of life had diminished, and I found the ego of this individual to be an added weight I should not have to carry. As many who are familiar with my experience may have said, “I was not heard.” I reminded myself of a question I had asked my professor years ago in a diversity class:
“Did you ever notice that the word “invalid” (IN-vuh-lĭd) is the same as “invalid” (in-VĂL-ĭd)?”
She said she thought it was a good question. So did I. And I was not about to give up on my health. Because in the “invalid” double entendre, I was neither.
I wish I could say it was smooth sailing after that—smooth as the waters during my trip out of the country. It has not been. Upon leaving the office of that first specialist, I sought two more. Of the three, each had a different opinion. It became clear to me that I could go into infinity like this—that for each person I saw I might get a different answer—and that wasn’t really an answer.
Hmmm…..So if I was going to get a grip on my own health and welfare, and indeed on my life which had at that point been marked by the painfully humble goal just to get through a day, partnered with an all-consuming quest for a cure, I needed a paradigm shift. And it started with this: If I want answers and I want a cure, I will have to find it myself.
“I am the Master of my Fate. I am the Captain of my Soul”
—Invictus, William Ernest Henley
In reflection, I see that back then, the waters were murky, first, because I was looking to people who, although intelligent and knowledgeable, were also limited by any of a number of factors: the parameters of their own educations; their own biases; science that does not yet have the tools to make sense of all aspects of health; basic humanity that renders them as capable of making mistakes as I am– “fallibility” it might be called in the Church I was raised—to be capable of error. Second, I realized that I was looking to lighthouses expecting them to have all-seeing rays of light. Instead I learned that I had to look with unyielding conviction beyond these current circumstances and steer my own ship. So it was time to take the wheel.
“Healing comes from within.”
I had long been saying that I know my body more than anyone else ever will. But my true paradigm shift came when I heard a loved one, who had been through infinitely more suffering than I, say, “Healing comes from within.” Healing comes from within. From within—not from with-out. From inside me—not from someone else. One psychological way to say this is that looking within gives us an “inner locus of control”—meaning that we have the power to shape events in our lives—as opposed to an “external locus of control” in which outside influences are in charge of what happens to us. It finally sunk in for me! If I honored and harnessed the power within myself for my healing, if I were the captain of my own ship, I could have hope! This is how I turned the tide: I concluded that instead of handing my power over to people who historically are revered for medical expertise and authority but who are also human like me, I would approach my health care not as something done to me or for me but as a collaborative effort between me and my medical team; that I would use the rays from the lighthouses for input and guidance but that ultimately I will steer myself in the direction that I see fit; that to the best of my ability and resources I would research and invite practitioners to be involved in my care instead of accepting someone those who may be “assigned” to my case; that I would initiate on-going dialogue regarding changes and updates in my health and healing; that I would think of members of my medical team not as practitioners with authority over me or my care but as medical consultants each with his or her own specialized area of knowledge; and that, consistent with other relationships that are ended because they are no longer beneficial, I could end a relationship with a practitioner if it was no longer egalitarian, collaborative, respectful, or helpful.
“A man can change his stars.”
–William Thatcher, “A Knight’s Tale”
In a favorite movie referenced above, a young boy, sent by his poverty-stricken father to be raised by an uncle, grows into adulthood with a belief instilled in him by his father—that he can change the course of the life of hardship he is expected to bear unto death by virtue of his humble beginnings. When I look back ten years ago to the start of my journey, I thought that I, too, might be “doomed to suffer” not just from my physical pain but from the frightfully arbitrary implication that it was “all in your head.” Not uniquely applied to me, as entire populations of people living with chronic, disabling, invisible illnesses have endured this same dismissal, I now think of the phrase “all in my head” as a label, and deduced that I and perhaps others like me had been though a labeling process akin to those endured by groups of people who have been prejudged or deprived of power in some way. But I decided that I do not need to go in the direction that someone else seemed to have predetermined for or imposed on me. I, too, had the power to change my stars.
“The biggest battle was redefining who I am.”
In order to change my path, I had to redefine the social construction of the phrase “all in my head.” For me, I have found it empowering to confront the pathologizing nature of this wording, give the phrase a new meaning of my own, and make the new meaning known. Some people might call this “reclaiming,” others might call it “reframing.” In any case, it is the statement, “It’s all in your head” that I chose to redefine because I myself opted to look at it this way…It IS all in my head!!! It IS all in my head in the sense that I am the mastermind behind my own approach to healing! It IS all in my head because my thoughts are a source of my own power! It IS all in my head because I control my head and what I put in it! It IS all in my head because I think critically and make informed choices regarding my healthcare. It IS all in my head because I am the one who contemplated and decided to consider myself to be in equal partnership with my providers! It IS all in my head because that is where I reformulated my approach into one of collaboration and recognition of humanity in lieu of hierarchy and absolute authority.
So yes, first specialist. You were right. It is all in my head, not for reasons you think but for the reasons I myself espouse. You do not define me. My illness does not define me. I define myself. It is all in my head. How is that for a double entendre?
“Never, never, never give up.”
Looking forward, I do not know who I will meet in the health care world as time goes on. To be realistic I anticipate there will be rough waters in my efforts toward collaborative care and that there will be professionals in the medical community who will not appreciate that I view them as consultants. That is OK. It is like a way of ruling out a job candidate—our values, philosophy, or approaches do not always match. It is part of our humanity. I endeavor not to judge people who disagree with me– I aim to persist. Winston Churchill was a fan of never giving up. And serendipitously, at the worship service I attended this morning, I came across this South African spiritual:
“Bambela, bambela, bambela, bambela,
Bamba, bamba, bamba, bamba, bamba,
O bamba, bambela.”
It translates as:
“Never give up, never give up, never give up, never give up,
Never, never, never, never, never, never,
No, never, never give up.”
Take a break maybe, but never give up. Undoubtedly easier said than done, but I have often thought that the harder things get, the more resilient I need to be. After all, I woke up today. I opened my eyes.