Sunday, June 10, 2007

As Verbs Change Tense Around Me

A few weeks ago, I met a wonderful, wise, and wickedly witty woman. She was the mother of a new friend of mine. Creel deserves a list of fabulous adjectives, too, but this post is about her mother.

Charl Krauss was an artist who painted with watercolors and sculpted clay. She was a mother and a grandmother. I'm sure she was many more things, too, but I didn't get the chance to find out what, although I knew almost immediately upon meeting her that I wanted the chance to hear about them from her. She was just 67 when she died two weeks later.

During lunch the day I was to meet Charl, Creel and I had been discussing some of my difficulties getting medical treatment, and she told me about having the same kind of problems getting proper treatment for her mother. Her mother was dealing with a number of medical problems, any of which are known to cause extreme pain, and yet every time Charl asked a Carle Clinic doctor for pain medication, she was ignored and left to continue suffering. At least one physician treated her as a drug-seeker -- threatening her that if she didn't stop asking for pain treatment, she'd have to find another doctor. Creel and Charl kept seeing different doctors at Carle Clinic, to which they were limited by their insurance resources (Medicaid/Medicare); they were not financially able to pay a non-Carle doctor.

As I've had the same experience with Carle Clinic doctors, I agreed with Creel that this was elder abuse, and encouraged her to take her mother to my primary care doctor (who I'm sure accepts Medicaid/Medicare and who also would have worked with them financially) to get proper care and pain treatment for her mother. She never got the chance.

After lunch, I followed Creel over to her house to try helping her with some problems she was having with her computer, and that's when I met Charl. I was struck almost immediately by two things. First, Charl reminded me of someone I couldn't quite identify. Second, the house was jarringly cold -- keeping the air conditioning turned up high was most comfortable for Charl. Even so, I recognized just as clearly as if I were looking in a mirror from Charl's wizened appearance and the way she held herself that she was in constant pain.

Charl didn't move from her chair during the entire time of my visit, although she adjusted her position within it often. I recognized that, too -- and the focused, almost trance-like expression which remained on her face no matter what we were discussing. These are the things people who are in excruciating pain learn to do, subconsciously, in order to manage pain which is not being properly medicated. Charl was better at it than I am -- much better. Not once did she lose her train of thought, as I do so often when the pain becomes overwhelming, and have to ask anyone to repeat herself -- at least, not while I was visiting.

Charl's mind was very much alive and as eager for knowledge and conversation as any intelligent person I have ever met. I wish I remembered the afternoon in exquisite detail, but instead what I remember are mostly impressions -- laughing out loud with Creel and Charl, giving and receiving validation over our common experiences, believing each other about the experiences we did not share, and feeling not nearly so alone as I usually do.

I also remember the room being absolutely full of color. There were paintings on every wall, done by Charl and her late husband. Multicultural influences dotted the room -- I remember lots of orange, red, and purple. Lots of warmth, both in color and in the feelings generated by the people within the room, such that the cold from the air conditioning was soon undetectable.

When Creel left the house for a short time to pick up one of her children from school, Charl engaged me in conversation about my own medical issues, which Creel had shared with her. Charl asked many questions about what had happened to me and who I had seen already, and generously offered advice on where to go next. At one point, Charl stopped and actually apologized for asking me, "so many personal questions." I could only laugh and tell her I truly didn't mind, as, after all, I had "put it all out there" on my blog in the first place, and I thanked her because her response -- both the validation and the attempt to assist -- was exactly what I had been seeking. I also thanked her because it is so rare that anyone bothers to do those things -- listen to another, believe her, and try to help.

There were so many things I wanted to ask Charl about her life -- about the interesting pieces of information her daughter Creel had shared with me. But I held back, realizing that would be rude because neither Charl nor Creel had already "put it all out there" on a blog or elsewhere, and assuming of course that there would be another time.

In the meantime, I enjoyed what Charl did choose to share with me immensely. Her response when her 4-month-old grandson managed to poop all over her lap while she was holding him was hysterical, and somehow spoke volumes about much older males who had not treated Charl with the respect she deserved.

On my way out, my eyes fell on a detail among all the colors in the room. It was an elephant, and suddenly I noticed there were elephants everywhere ... and so I admired Charl's elephant collection aloud, and mentioned my own elephant collection at home.

Later that evening after I returned home, I finally figured out who Charl reminded me of ... me. It was not that Charl represented who I'd like to be someday -- although I certainly admired her and would be honored to be like her. It was that I sensed in her, as there is in me, a desperate resignation which comes from having been ignored too long, particularly by doctors. Charl, like me, was a woman struggling valiantly to communicate with and obtain help from a very uncooperative medical system while enduring incredible, untreated pain. Like me, she had thus become fiercely angry and with very, very good reason. In Charl's case at least, that sense of desperate resignation was an emptying hourglass almost out of sand.

Friday afternoon, June 8th, I spoke briefly on the phone with Creel, whom I hadn't heard from for a while. She told me her mother had suddenly passed away. I was shocked and deeply saddened to learn this vital, vibrant, and valuable woman I had met just weeks ago had vanished from this plane of existence.

I was also saddened, but NOT at all shocked, to learn the cause of her untimely -- and certainly excruciatingly painful -- death. The cancer had been missed by numerous physicians over numerous visits at both Carle Foundation Hospital's Emergency Room and Carle Clinic. All these doctors missed diagnosing Charl's cancer SOLELY BECAUSE THEY REFUSED TO LISTEN TO, BELIEVE, AND APPROPRIATELY TREAT THEIR PATIENT. THEY WERE CALLOUS, ABUSIVE, AND NEGLIGENT. THEIR ACTIONS WERE NO LESS THAN MALPRACTICE AND, IN MY OPINION, MURDER. AND THE SCARIEST THING IS, CARLE'S DOCTORS DO THE SAME THING EVERY DAY, ALL DAY, WITH ALMOST EVERY PATIENT. BASED ON MY OWN EXPERIENCE, CHARL'S TREATMENT WAS THE APPALLING NORM, RATHER THAN A REGRETTABLE EXCEPTION.

I don't care what kind of cancer Charl had, how fast acting it was, how difficult to diagnose, or about any other "mitigating factors." A gentle, generous human being -- a woman who was HURTING -- was not given the respect and dignity of being believed and appropriately treated when she repeatedly told doctors she was in pain. That woman is now dead after suffering a death confirmed after the fact to have been an excruciatingly painful one. The doctors who had the power to make her life a whole lot better, and maybe little bit longer, are all walking around as if nothing has happened, and that makes me terribly angry.

Most people are terrified of getting cancer. Imagine having end stage cancer and being unable to get even a Tylenol #3. That's what happened to Charl Krauss.

It's unconscionable.

At Carle Clinic, it's standard operating procedure.

1 comment:

Jenna said...

Oh my goodness, Heather! That was just appalling to read. Poor Charl. No one should have to live (or die) that way. It's been a real eye-opener to read of your experiences. It just reminds me of why I am a vocal and active participant in my own health care and blessed to have good doctors in this area. *hug*

I know the look that you mean, though. My mother suffers from fibromyalgia and tends to be in a lot of pain most of the time. It's a sad and unnecessary existence. But she has trouble getting adequate medical care, as well.