Grandfather Speaks to Eagles by Susan Seddon Boulet
What is a Healer?
A physician, nurse or therapist? A shaman, medicine man or medicine woman? Or perhaps anyone who has the ability to help an ailing person transcend suffering?
Until recently I would have answered YES to any of the above. But I’ve learned that healing depends entirely on the intention of the practitioner. Credentials may make a healer on paper but that will not benefit the patient unless the healer’s behavior and intentions are in alignment. And their intention must be focused on what is in the best interest of the patient.
“Thousand of doctors across the U.S. are on medical probation for reasons including drug abuse, sexual misconduct, and making careless—sometimes deadly—mistakes. But they’re still out there practicing.” What You Don’t Know About Your Doctor Could Hurt You by Rachel Rabkin Peachman/May 2016 Consumer Reports cover story.
“Many hospitals compensate doctors on an “eat-what-you-kill” basis: The more procedures you perform, the higher your year-end bonus.” From Unaccountable: What Hospitals Won’t Tell You and How Transparency Can Revolutionize Health Care by Marty Makary, MD. Dr. Makary is a Surgical Director at Johns Hopkins Hospital and led the World Health Organization effort to develop ways to measure healthcare quality.
“A girlfriend of mine who’d had breast cancer twice suggested getting a pathology second opinion and that was really the thing that made all the difference.” Rita Wilson on The Today Show http://www.today.com/health/rita-wilson-talks-breast-cancer-today-show-stresses-second-opinion-t78276 speaking about the double mastectomy she had in 2015. The pathology had initially come back negative but two additional pathologists confirmed she had cancer. Ms. Wilson stresses the value of a second opinion on pathology reports.
I saw Rita Wilson on that episode of the Today Show and remember thinking if this talented actor, singer, songwriter and wife of one of our most beloved actors can’t get an accurate diagnosis what does that say about our healthcare system? What hope is there for the rest of us?
Those questions would be answered when unexpected health issues cropped up in the summer of 2015. I found out that accountability is spotty and there are numerous opportunities for practitioners lacking a moral compass to promote unnecessary surgeries, hide mistakes, falsify records and ridicule patients to their face or covertly in their medical records.
In my case a pelvic ultrasound showed known uterine fibroids but also cystic masses that appeared to represent the ovaries but might also include fluid in the fallopian tubes. Additional tests indicated only a 5% chance of these cysts being cancerous. I gave my gynecologist and gynecological oncologist information about a large study done on cysts like mine. The findings showed these are almost never cancerous and ongoing ultrasounds to monitor changes would be sufficient. I spoke with one of the gynecological oncologists involved with the study who confirmed what I’d read. My doctors dismissed both me and the study and told me I needed a total hysterectomy.
When I told them that wasn’t the right path for me I was written off. My gynecologist warned me to no longer hold my elderly cat, Molly, on my lap for her daily brushing because if she accidentally burst one of the ovarian cysts and it was malignant the cancer would immediately go into my bloodstream and my days would be numbered. For the next seven weeks I brushed Molly as she sat by my side. I crawled into an emotional cave and wondered if my dear old girl would outlive me.
It was a last-minute question I asked the oncologist that led him to tell me grudgingly about a procedure I might look into for the fibroids. That procedure required an MRI in advance to see if I was a candidate. The MRI showed my ovaries were clear. I didn’t have ovarian cysts. What I had was fluid in the fallopian tubes—that other possibility mentioned in the ultrasound report that no one paid attention to.
When I asked my gynecologist why she hadn’t ordered an MRI she told me women are wheeled into operating rooms every day for hysterectomies based entirely on ultrasounds. A fleeting vision of a television show crossed my mind—The Hysterectomy Game—and I’d been unknowingly entered as a contestant. Now I understood why 600,000 hysterectomies are performed annually in the United States even though many of them are unnecessary. They’re big money makers.
I wound up having the fibroid procedure the oncologist told me about. The four-hour surgery was uneventful except for the conscious sedation only working sporadically. Before your toes start curling I want to stress I was in no pain and found it fascinating. I’ve had multiple procedures but this was the first time the drug, Versed, didn’t block my memory. Comments were made by the medical staff prepping me for pelvic surgery (use your imagination) that never would have occurred if anyone thought I’d recall them later. For me it was comic relief. My surgeon, however, was very concerned about what I’d heard and how much of the procedure I remembered.
It was a decision to get all the medical notes from my doctors that changed everything. What I read left me horrified. Falsified records, half-truths, missing information and utter nonsense. My long-time gynecologist eliminated a crucial comment she’d made and created a statement that had never been said to hide an incorrect assessment of my cysts. You know, the ones that never existed. Additional statements pushing me toward a hysterectomy had been surgically removed.
The oncologist took the opportunity to rip me to pieces in his notes. He knew an MRI would have clarified what was going on in my pelvis but he never ordered one. Instead he penned a rant that can only be called insane, especially considering he had misdiagnosed me in the first place. He made several disturbing comments relative to the years of sexual abuse I’d endured as a child at the hands of my father. Why he did something so reckless is hard to understand. Anyone can get their notes and I’d think requesting records from a consulting specialist would be common. A physician I showed these notes to said no doctor would want their patient to read something like this. Another told me some doctors, particularly specialists, have ego issues and react poorly when a patient doesn’t follow the doctor’s recommendations. I’d shared my story, my body and my fears for my health with this oncologist. In return he left me feeling something I hadn’t felt since I was a little girl.
The land of creatures called to me and I took refuge there hoping I might heal. But it was not to be for unfinished business stood in the way.
Starchild by Susan Seddon Boulet
I began a journey to repair my notes not knowing I’d entered a toxic world that would take a terrible toll on my well-being. I prepared a large folder of information that would be attached to my records and presented it to the executive director of the oncology center. I told him approximately 1 in 4 women are sexually abused before the age of eighteen. That means each of their gynecological oncologists spread over multiple locations may see one or two women per day who have sexual abuse in their background. Clearly their doctors were not trained to address this sad but all too prevalent issue. The oncologist I met with will never know how his treachery impacted me because he left the practice three weeks after I saw him last summer.
As for the pelvic surgery, my medical records from the surgeon made no mention of the anesthesia not fully working nor could I find any indication of the anesthesiologist or hospital being informed.
I decided it was in the best interest of my health to abandon the journey to correct my medical files after someone who knew these troubled waters gave me a missing puzzle piece. I thought records were a true account of what transpired with my doctors whether in their office, on the phone or in surgery. The true purpose of medical records, I was told, is to protect doctors in case of litigation.
And there it was. Clarity.
My pelvic organs—the ones that had never borne children or given me any trouble over the years—had been under attack. I’d done my best to protect them but it had left me disillusioned and heartbroken. I’d made the mistake of giving away my power to healthcare professionals who had no interest in my health. How would I proceed in the future when I needed medical attention? If I fell off a ladder and my shin bone was left protruding from my eyeball would I go to a hospital or try to remove it myself with tweezers?
A belief system I’d held my entire life—that doctors are competent and trustworthy and want to help me—fell apart before my eyes. It made me wonder if there were other belief systems I’d bought into over the years that might not be true. Finding a soul mate is possible? Anyone can make money in the stock market? Reese’s Peanut Butter Cups are a proven weight-loss program? Oh, please, not that last one…
Those who were seen dancing were thought to be insane by those who could not hear the music – Friedrich Nietzsche
I’d stood up for my rights as a woman and let my doctors know I had plans for my life even though I was no longer in my twenties. Instead of being supportive or inspired this seemed to be a tipping point for my crack medical team. They couldn’t see beyond the boundaries of their limited thinking. It became clear that had I been a man my age, speaking to my most-likely male doctor, it would have been a different story. A man would have been seen as a serious player with a long and fulfilling life ahead of him. Options would have been laid before him like a world-class pastry chef presenting a dessert tray. But gender bias is alive and well in gynecology. I was seen differently, as if I was in a winding-down-no-longer-relevant mode. My doctors were trying to stuff me into a drab little box that would sit in an old filing cabinet in an abandoned underground bunker somewhere in the desert. No woman should be treated that way…including this stubborn New Yorker who dances with dragons and carries a sword.
I thought of a man who read my post last year about the cancer scare. He told me the curvature of the ovaries and fallopian tubes in the artwork I’d posted would make a beautiful cross-guard for a sword. Poetic words from a light-being in an earthly body who saw my pelvis as magical. Thank you, Mark. If only my doctors shared your vision.
It’s difficult to explain my feelings of despair. I was drowning in a sea of shame. My body hurt as memories of the abuse I’d endured resurfaced after being dormant for decades. I had to do SOMETHING to move me away from the dark place I was in. One day I found myself driving to the hospital to request their paperwork from my uterine surgery. Medical records was located in the basement so I took the elevator down and walked up to the woman at the front desk. I was met with a huge smile emanating from one of the kindest faces I’d ever seen. It was my understanding it would take up to ten days to get the records but this sweet woman said she’d print them off right away if I could wait a moment. I was there for about ten minutes but during that time the woman kept me updated on her progress and apologized for how long it was taking. She double-checked my form to be certain she’d retrieved everything I’d asked for. Then she handed the paperwork to me with so much joy you’d have thought she was placing a newborn child in my arms.
This unassuming woman who made a fraction of my doctors’ salaries and worked in a windowless room surrounded by file cabinets treated me as if my needs were important and my records were precious. For the first time in over half a year I felt a weight lifting from my shoulders. I looked at her peaceful face, framed by a halo of tiny red curls, and came to a glorious realization.
I had finally found a healer.
This is how the magnificent woman in medical records appeared to me. She made such a profound impact on my life I wanted to include an image so you could feel her power and beauty
A week later I was still thinking about this special woman. I wanted to send her flowers but didn’t know her name so I drove over to the hospital with a floral arrangement hoping to thank her in person. It turned out she was at a different location that day so I left a note with the flowers explaining how deeply she’d touched me. Before I left I turned to the other people in medical records and told them they were all important and the work they did mattered more than they could possibly know.
Going forward I’ll have a different relationship with my doctors. I’ll only offer the information they need to diagnose me—no more excessive sharing. I’ll explain up front that I’ll be getting my medical files as part of my ongoing healthcare so I can be certain we’re on the same page. If tests are required I’ll read the results immediately and discuss them with my doctors. I’ll ask for a second reading when appropriate as Rita Wilson advised. I’ll personally pick up my records. If they must be mailed I’ll have a signature from me required upon delivery. No faxing or emailing of notes.
I’ve been fortunate to have many exceptional doctors, nurses and other medical professionals in my life over the years. I’ve woken up from enough surgeries to know the value of the staff by your bedside helping you come out of anesthesia. I’ll always believe the woman at my gynecologist’s office who drew the blood for the cancer marker test was an angel sent to guide me. Lack of accountability may exist but it doesn’t mean all doctors exploit that defect in the healthcare system. They made the decision to pursue a healing profession and spent many years earning their medical degrees. I choose to believe that most medical practitioners are compassionate and ethical people who bring their highest behavior to their patients with the intention of helping them find wellness.
I’d come far on my journey but I still couldn’t find peace. The events of the previous year continued to play over and over in my mind. I lost countless hours of sleep trying to stay afloat on an ocean of sorrow.
Without warning, on April 5, 2016 I lost my dear old cat, Molly, to cancer no one knew she had. She was the last of my six dogs and four cats and had lived to just shy of eighteen years. For the first time since 1980 I’d be returning to a home without a furry face to greet me. Molly spoke clearly to me as she began to transition from her body.
“You are haunted by a journey that’s complete, even if it feels unfinished. It’s time to mourn the loss and walk away. The answers you seek are in the silence.”
As my beloved friend took her last breath I realized what she was telling me. It was time to let the feelings of betrayal go and step out of that journey. I hadn’t been able to see it because the path still lay at my feet, beckoning me to continue. Molly helped me understand that even though a road unfolded before me my travels on it had come to an end. Peace filled my heart as the path that had consumed my body and soul dissipated into nothingness.
Oh, my sweet girl. One last lesson for me.
“Let your sorrow go,” she purred,” and I will carry it with me through the moonlight and beyond the sun to a place where it will be reborn as starlight.”
And that is what I did.