Thursday, March 13, 2008

Day +288

Written language can be a funny thing, the same can be said of human perception. I once took a class with a particular professor in my chosen major who insisted that we write in single stroke upper case. I subsequently went on to take three other classes with him, so my handwriting became upper case block print. I didn't think anything of this since everyone else in the professional field I aspired to also wrote in the same style. Unfortunately, my day job wasn't in this field.

I worked with a person who could kindly be perceived as "high maintenance". Generally not a bad person, just difficult to please. When I would leave a note behind to explain what had been going on when he was off, it was written in single stroke upper case. I soon discovered that this left him unhinged as he would call me angry and upset that I would be "yelling" at him by leaving written notes all in capital letters. His perception was that I was being irrational by writing in all caps. I explained the reason behind my handwriting to no avail. Our supervisor had to intercede to calm him down. He eventually backed off of me, but when a subordinate left a note written in all caps, he exploded all over again. I'd received several notes from the same person and she just wrote with the caps lock on. Perception.

The same guy used to get really bent out of the frame when I said, "Okay," while he was explaining something to me. For example: "You do it like this;" "Okay." His face would get very red and his manner would become brusque. At one point his body language started setting off my alarm bells so I just asked what the problem was. He felt that I was mocking him and blowing him off every time I said "okay" to acknowledge that I'd heard and understood him. It would appear that this is what he did when he was dealing with someone who he thought was inferior. I suppose the lesson that I'm trying to convey is that we're all on a different page as far as life experiences and perceptions go.

It's not my intention that people perceive Chris as an "alarmist" who "incites hysteria." An angry and hysterical mob wielding pitch forks and torches has yet to ring my door bell as a result of Chris' actions. I sincerely believe that Chris is one of the reasons that I got my transplant. When my insurance company refused to pay for my transplant because someone in the "medical field" reviewing my case said it would be experimental, Chris took it upon himself to contact every major cancer research center to get their foremost expert on leukemia and transplants to write a letter of protest. Most doctors obliged gracefully. Chris was able to assemble quite an impressive and pedigreed list of doctors' letters arguing that stem cell transplant using cord blood was not experimental. The insurance company flipped its decision regarding my transplant before Chris was able to submit the packet. It would seem that the doctor who reviewed my case was a GP with no experience with transplants, stem cell or otherwise. The reversed decision was not an act of compassion, but rather a decision to avoid bad publicity in the very likely case that I died as a result of their actions. There's more to that story, but I'm not going to get into it.

Chris was asked to turn the letters over to the head of transplant research. He had managed to accomplish something that they didn't think possible. It has now been turned into a packet that I believe is used whenever other patients run into similar insurance problems.

Chris makes sure that I follow doctor's orders to the letter of the law. When he's not clear on something, he asks questions to be sure. He has a degree in mechanical engineering and gets teased about it regularly by staff because "you can always spot the engineers by the questions they ask." These are the guys who make sure that buildings don't collapse and machines are designed to perfom a "function". As far as design goes, I'd rather get involved in something knowing that the person who designed it asked a lot of questions and was supremely anal in making sure everything was as it should be. I'm just one of those people who doesn't relish laying under a pile of concrete because someone was having an off day.

I know that I'm reacting to a comment that was left and I'm sure that the person that left it was only trying to be helpful with good intentions. It's just that "hate" is one of those words that makes people stop actively listening. It tends to create an irrational feeling of bias regardless of an innocuous context. As for people in the "medical field" hating family like Chris, so be it. No single person is infallible and we all hate being questioned to some degree. I've made plenty of mistakes in my life that were corrected when someone "questioned" me. There are a lot of professions that get lumped under the banner of "medical field," from very well compensated doctors down to nurses' assistants who aren't so well paid. So, if a person with an extensive medical education resents me or a family member who peppers them with questions regarding a loved one's health, so be it. I'm currently watching someone die of a disease that is similar to mine because she's happy with the status quo and her doctor tells her not to worry that she's been running temperatures of over 102 for the last month. Her family members don't ask questions of the medical staff and friends that have dared to question the doctor's decisions have been brushed off as "alarmist." I suppose it's all in a person's perception. I've been in identical situations to hers and my team acted differently and I'm grateful, because I'm still here.

By no means am I slamming the medical community, far from it. There are so many bright and talented people in this community who are really working to make things better. These men and women have my utmost respect because they do such an emotionally and intellectually difficult job. I've been lucky in that my care has been under some very amazing doctors and nurses.

If my doctors and nurses get a bit piqued because I or Chris ask too many questions, then so be it. They're allowed to fire me as a patient. There is no law that says they have to have me as a client. They are encouraged to speak their mind and very often do with no lasting ill will on my part. I very much appreciate a doctor or nurse who can have an open dialogue with me. When I was getting ready to be transplanted, I learned that the average successful transplant patient weighed 5 to 10 kilograms less than me. Wanting to be in optimum shape on transplant day, I asked my doctor if I should lose weight to ensure success. I could tell by her startled look that I'd surprised her. Then she started to laugh quietly and told me absolutely not. Had I not asked, I would have been on some ridiculous diet in the midst of treatment. The thought still cracks me up.

I promise, Chris is not an alarmist and doesn't mean to incite hysteria. He's just a man who is worried about his wife and whether or not he'll get to spend a long life with her. As for me, I am following doctor's orders for when I'm neutropenic. This means no crowds of people and wearing a mask when I go out in public. No fresh fruits or veggies unless they've been cooked thoroughly; making a point of keeping my hands clean and not touching my eyes or mouth after handling something. Chris doesn't keep me locked up in a sterile bubble, I promise. Those of you who know me know that I wouldn't tolerate it. So, as far as following doctor's orders...check.

For the person who left the comment, I hope that I have not offended you and I really do appreciate that you spoke your mind. If you stop reading the blog as a result of my response, I'm sorry, but I had to let you know how I felt.

9 comments:

Anonymous said...

So eloquently said Ann!

Anonymous said...

So eloquently said Ann!

Anonymous said...

So eloquently said Ann!

Susan Carrier said...

Bravo!

Nancy said...

Well said Ann. : )

Tina said...

Ann + Chris equals the dynamic duo.

You are too kind regarding that comment...but perhaps I am little biased.

It's that positive and *rational* attitude of yours that has really been carrying your through all of this. And of course the extremely supportive hubby at your side. I've said it time and again, you are so very lucky to have Chris in your life, especially now.

Poo on any negative vibes coming your way.

Anonymous said...

As a "layperson" who quickly became a "family that (some of) the medical profession hates" after having a severely premature daughter, I applaud you and Chris for the way you have handled this whole thing. I have been impressed at how Chris is thorough and intense in educating himself on your illness, watching someone he loves battle for her life. And I have been impressed at how fair and gentle you are throughout all of this, Ann!

It really is a matter of perspective - I've had medical people of all kinds brush me off, and medical people of all kinds go out of their way to work with me as a team member (in other words, respect that I have a brain and that I use it.)

Anyway, just wanted to post my two cents of support. :) I'm a long time reader from Joe's blog who hasn't commented before now. :)

Mara said...

I can only hope and pray that my husband is as much of an "alarmist" if a medical emergency befalls me. It would probably save a life. And if the rank coward "in the medical field" is willing to stand by their words, perhaps they can identify themselves and where they work? No doubt their boss and colleagues will stand by the posting.

I could tell you stories of amazingly cruel and unnecesary acts that people have done while hiding online. I won't depress you, but the moral is that there are pathetic trolls whose can only feel worth by trashing others, and you should not take them seriously just because they know the right words to strike close to home.

Mabyn Shingleton said...

Now doesn't that just want to make you smack someone? Whomever wrote that titilating little note needs to get a life Ann. That is absolutely RIDICULOUS. You do what you are comfortable doing...it is your life.

I'm glad I came online. I guess I needed to see that jerks were still alive an well in the world. :) Whomever she is, she needs to change jobs or take a very long vacation. She certainly doesn't need to be working with the public.

We all run into people like that who are unhappy in their lives and they try to take it out on you. It really irks me. Oh well... I hope your day is a nice one tomorrow.