ThinKing of Robin King
Vitriolic, acerbic, egregious. Onomatopoeias. These are words that sound like what they mean. And they basically mean mean. If you say the words in the context of their meaning, it’s difficult to NOT find your face contorted in some rendition of a pursed lipped frown as if you have a horrible taste in your mouth. Go ahead. Try it. Say, “Vitriolic”…Cruella Deville mouth right?
Well, these three words also describe the attitudes associated with fat people in the healthcare system. There is an indisputable disdain for fat folks seeking medical care. It is almost as if they shouldn’t be treated because they got themselves into a poorer state of health intentionally by being fat. There is blame, there is disgust, and there is a nauseating lack of empathy or sympathy for a fellow human being who is suffering from a medical condition that if presented by a thin person would garner positive attention, consoling, and non-judgmental healthcare solutions.
I’ve been meaning to write about this for a couple of years now, but the timing never seemed right and the subject loomed insurmountable in its magnitude. I wanted to write about it when my childhood friend died from complications of weight loss surgery that he undertook at the insistence of his doctor and family.
I wanted to write about it when my sister was on a Tolkien quest to find a surgeon who would do hip replacement surgery without insisting that she lose 100 pounds beforehand.
And I wanted to write about it when I received a poignant email from the husband of a subscriber to my blog and Schmoozeletter.
But each time I sat down to write, it just felt too daunting; the timing wasn’t right, there were other topics to address, I was traveling. My perfectionist inclinations along with my occasional all or nothing thinking kept me from sharing some of these stories. Maybe it is because I am a sucker for happy endings and there are relatively few happy endings in the world where fat meets healthcare. Maybe it’s because I feel inadequate to address all of the nuances of the topic and honestly don’t feel like going into my research mode to provide reams of evidence based arguments and citations to support my point of view.
Maybe it’s because I wanted to just be able to say that it sucks that people are treated so poorly when they are feeling so poorly and there is no excuse for that no matter what the etiology of the illness is or what a person weighs.
But then two things happened…ASDAH, a non profit organization promoting Size Diversity and Health, released this incredible video created by Dr. Deb Burgard, Amy Herskowitz, and Stacey Bias. It addressed so many of the talking points that I wanted to include but so much more brilliantly than I could ever have done. (Take a moment and see why the idea of a one size fits all approach to health is barking up the wrong tree.
And the second…My sister lost 50 pounds. It took over a year. Her pain was pervasive and engaging in weight loss exercise regimens, out of the question. And still the doctor refused to replace her hip. Until last week. With perseverance and determination, she found a surgeon in Florida, not far from where she lives, that agreed she needed to be out of pain and conducted the surgery. I am thrilled to report she was just moved to rehab and is doing amazingly well. With that piece of good news under my belt, I felt energized enough to tell you the story of Robin King and John J. Mccallion. It is a beautiful love story about connection, loss, acceptance, and anger. There is no happy ending per se, but if you count finding out that you have more people in your community than you thought, well then, the ending is a bona fide happily ever after.
Last fall I received the following email:
“Dr. Schwartz, You have been emailing my LATE wife Robin. I continue to visit her mail regularly. This is her husband, John J. McCallion, writing. Congratulations on the excellent work you are doing. I am disposing of the estate slowly and wonder if you or someone you know would care to acquire her books on size acceptance? I feel those especially should go to an appreciative home – free of charge and posted at my expense. I will make a list if you or someone you know might be interested.
Robin’s deteriorating condition (Primary Pulmonary Hypertension that afflicts only around 30,000 people in the entire US) led to an ultimate weight loss of 144 lbs. – a side-effect of the Remodulin medication she had to take. The bitter irony is that it put her in the establishment weight range that permitted her to be placed on the LIST for a double-lung transplant. After all, we cannot have obese people survive, can we? Did her body become so weakened that it could not stand the trauma of the surgery, despite initial reports that she emerged with her vital signs intact? The autopsy I permitted was inconclusive……………. Can you imagine my reaction when I read about that splendid intellectual, Jessica Simpson, complain that she thought her life was over when she gained several extra pounds…. THEN hear my primary physician tell me (despite complaints from concerned acquaintances that I was looking poorly) that losing weight was one of the things to do to become healthy?! I think part of me went through the roof and is still up there somewhere in orbit around the outer planets………………………
I wish we could have “met” under happier circumstances – and that we lived in a much less aggravating world.
John Mccallion – and Robin King, who will always be a part of me.”
I was filled with so many emotions as I read the letter and responded to John as best as I could.
“John, as good as I may be with words, there are never words to express condolences that don’t sound pat or cliche…so when I say I am sorry for your loss, it doesn’t come close to voicing my empathy for the grief you must be experiencing. Thank you for writing such a personal note, your story is enraging and confirms how our medical system continues to treat people poorly based on weight criteria. The irony you describe is heartbreaking and asks so many more questions than it answers. I would be honored to have Robin’s books and will treat them as precious reminders that connections are made via social media that are meaningful despite efforts of the trolls to banish fat/size acceptance advocates from the internet.
I will of course be happy to keep YOU on my mailing list if you want to continue to read my blogs and newsletters. Lastly, if and when you feel up to it and if it’s something you would be interested in doing, I would be honored to post your story/tribute to Robin and what your doctor told you on my blog. What you have to say is very important.
All my best wishes and gratitude for contacting me. Deah”
John wrote back:
“…Robin’s passing happened in the cruelest possible way. We knew that 70 percent of patients died before suitable lungs were available and 20 percent expired during surgery. When the operation was announced to have been a success with the seventh set of lungs finally deemed good enough (she emerged with excellent vital signs) my brother in the old country cheered on the phone and promised the rest of the family would join him soon…It was to be a short-lived moment of triumph: When she did not regain consciousness quickly, a brain scan revealed that she never would….She had suffered two MASSIVE strokes (a “very rare occurrence”) that had wiped out her faculties beyond redemption, and it was left to me to authorize removal of life support. God, I MISS her desperately and am convinced beyond any shadow of doubt that I always will.
You have my permission to quote what I said and disseminate our story. Robin was extremely unhappy to have slid onto the transplant list in such a random way, but I would not have let her refuse on principle EVEN if she had wanted to. Best wishes, John”
Deah: “Thank you John. By the way, I just heard from a woman who is doing research on medical bias towards fat patients for her doctorate. Is it ok if I share your story with her? Also this article came out yesterday, I thought you may want to take a gander. I promise not to bombard you with info on this subject. I’m sure it is all too new and sensitive of a subject. But just know there are fat activists out here in the world calling the medical profession to task. http://today.uconn.edu/blog/2014/10/doctors-must-examine-own-weight-bias-before-treating-patients-researcher-says/?utm_source=FacStaffDailyDigest The book package arrived safe and sound. They are a fantastic collection and very dear. Thank you, Deah”
John: “I am gratified that the books have arrived at such an appreciative and welcoming home…………The only other email that came at the same time as yours was one telling me to love my body again by eating something that would avoid the need to diet……………….God help us! Have you seen this link? http://www.huffingtonpost.com/kathleen-brooks/being-fat_b_6097544.html?ncid=txtlnkusaolp00000592
Deah: “Thanks John. I hadn’t seen this one. Isn’t it so awful that this woman survived an organ transplant and is unable to enjoy her “second chance” of life because of body hate? It breaks my heart!”
John: “Dr. Schwartz,…mingled with pride. Among the NUMEROUS papers Robin left behind I discovered tonight Certificates she gained for winning first prize in Rump Parliament’s first Writing Contest (Fiction) in late 1994. There is also a phenomenal amount of correspondence relating to levels of Mathematics I could not reach in my wildest dreams. That big girl married far beneath her station: No wonder I miss her?! John.”
John and I continue to be in touch, sharing links from time to time. He sent me two other links about him and Robin which I have included as well at the end of this post.* And I received a box of the Rump Parliament zines that brought me waaaaaay back in time. It is difficult to look at the collection of books and magazines that John sent to me without feeling appreciative of the fat activist and size acceptance pioneers that clearly found their way into Robin and John’s lives. Like a fat history channel documentary the boxes were filled with issues of Radiance, BBW, and books all about the importance of loving bodies of all shapes and sizes and rejecting the “tyranny of slenderness.”
I wonder how many other books would have found their way into Robin’s collection and whether or not she would have written more on the subject herself? The collection pointed out to me that our movement is gaining momentum and our presence provides safety and support for so many folks. And even if we think our blogs are not being read by anyone and our writing just goes into a vacuum somewhere because of a lack of comments or feedback appearing in our inboxes, we may be surprised at how much we are helping to create a community.
I’ve said it before and I will say it again, It’s time to put the HEAL back into HEALth and the CARE back into healthCARE.
And thank YOU John, for caring and sharing such a precious part of your world.
*Here is a link to a perceptive obituary (scroll down when you reach it).
*The story of our life together is here:
Til next time,
For Schmoozeletter Refugees: Important Dates and Announcements!
March 9, 2015: Deadline for CFP for the 7th Annual Eating Recovery Center Foundation Eating Disorders Conference, August 21-22, 2015 in Denver, CO. CLICK HERE for info.
April 9-12, 2015: American Society of Group Psychotherapists and Psychodrama (ASGPP) conference in Philadelphia, PA. CLICK HERE for info.
April 16-17, 2015: National Eating Disorders Information Centre Conference (NEDIC), in Toronto, Canada. CLICK HERE for info.
April 25-28, 2015: New York State Therapeutic Recreation Association (NYSTRA) 20th annual conference, in Sarasota Springs, New York. I am honored to be the Keynote Speaker for this event! For info please contact Daniele Fish at: email@example.com
April 30, 2015: Deadline for CFP for the 3rd Annual International Weight Stigma Conference September, 18-19, 2015 in Reykjavik, Iceland. CLICK HERE for info.
June 5-6, 2015: Eating Disorders in Sport Conference, in St. Louis, MO. CLICK HERE for info
July 17-19, 2015: Association for Size Diversity and Health (ASDAH) Conference, in Boston, MA. CLICK HERE for info.October 1-3, 2015: The National Eating Disorders Association’s (NEDA) annual conference in San Diego, CA. CLICK HERE for more info.