Tuesday, August 26, 2008

Video Link

Hi All,

Here is a link to CF Tube where I was interviewed by the wonderful Sarah at cysticfibrosis.com

This was an interview we did at the recent CFRI Conference in California.

Can you say motor mouth?? :)

The folks at CFRI and cysticfibrosis.com are wonderful. A sincere thank you to everyone at both organizations!!!

Monday, August 25, 2008

Changing Perspectives

As I have mentioned before, one of the most exciting parts of this year has been speaking to healthcare professionals and students. I suppose, after the last 8 months of peeking behind the curtain, I have changed some of my perspectives.

I see the kids, and I now see they are kids, in med school and I think about myself at that age. What were you doing at 23, 24? I was thinking about boys and trying to figure out how to live without mom's cooking. And what are these kids doing? Facing a mountain of school work and trying to stumble around the floors without killing anybody or making a stupid mistake. At one of my lectures I was listening to the teacher reprimand the class for not getting homework in on time. This is not the vision in my head when I think of my intern or resident. The white coat can be so convincing, can't it?

I feel for these kids. They have a huge amount of information to digest while working with patients and being the low man on the totem poll on the floor. Guess how much they get taught about having compassionate conversations? Guess how much they learn about what it's like to be a patient? Guess how much they get to practice delivering bad news before they actually have to do it?

You guessed it: rarely to never. I am often told by students (of all kinds) that my lectures are the extent of their education on patient perspective! How could that be?

When I look into the audience, I see some people who look grounded and some who are older and have wisdom written on their face. Occasionally, I am approached by a med student, nursing student, etc who has survived an illness and really 'gets it'. I have had a few who told me they have had to "tune me out or they would cry"--they didn't want their peers to know they had an illness. Mostly, I see young girls and boys who haven't a clue. They have lived "normal" lives filled with sports and clubs. They have not had an illness and probably have never been very close to someone who has. They may have never even seen death before.

And now, here we are, filling their minds with chemistry, biology and anatomy. There is a big piece missing--how do you interact with patients? You can't interact effectively until you feel comfortable so how do you feel comfortable talking to patients? You can't feel comfortable until you have a framework for what it feels like to be in a similar circumstance. Where do you find this framework? Without this framework, you are lost, say stupid things, and grow to dread having a conversation.

Where this discomfort leads is up to the individual. Some work at it, on their own time, and become compassionate and skilled caregivers. Some decide the discomfort is no worth the effort and go on the path of the stereotypical doctor--cold and very cerebral.

But is that their fault? Would they have taken a different path if more time in school was dedicated to cultivating these incredibly intimate human moments that health professionals are part of every day?

And my new-found sympathy goes even farther. I think us patients are often too hard on doctors and nurses. We pick them apart. "Did you hear that? Why did he/she just say that? Wasn't that rude? Can you believe he/she just said that to me?"

Guilty. I've heard people do it and I've done it myself. There is almost a satisfaction out of proving that your healthcare provider is a jerk. Why? Do we need to tear them down because we feel inferior. Are we projecting our anger about the illness onto the provider?

We all say stupid stuff sometimes. We all say things that come out wrong. We all say things we didn't mean and regret it later. Why, then, when a doc or nurse who is usually kind and considerate says something a bit out of line does it become a criminal offense?

And then, here's the biggee: They actually can't figure things out sometimes. Sometimes they are baffled by illnesses and sometimes they are baffled by people.
Sometimes, they want to help us but they can't. They are limited in their scope of knowledge. Sometimes, they want to help us but they can't figure out US out, the way we act, talk, the way we feel about things. We can be a bigger mystery than our body!

So, here's what I'm saying--we have unrealistic expectations about our healthcare providers. We don't cut them slack for being falliable humans. So why is that?

Culture.

This is part of the breeding in school. Doctors are the quintessential "Fake it Until You Make It." They have never placed a central line but it is thier job to reassure us and act as if they have everything completely under control. They are terrified of breaking the news but they have to act calm and cool. They don't know as much about our illness as we do but they have to present themselves as the authority. Why? Training.

I dream of the day when the curtain is pulled back and we will understand each other as humans and partners. Not authority and pittiful case. I dream of the day schools teach patient perspective and the art of communication and consider it essential for good care.

Recently, I had a healthcare provider giving me my PFTs (Pulmonary Function Test). She was new, it was obvious. I have been doing this since I was a child. You can tell who is new and who is uncomfortable. She made me do all of these useless things while forgetting the important stuff like my nose clip. She was very invested in presenting herself as an authority and I was amused. I was able to step out of myself at a time when I would normally be extremely annoyed. I saw her as scared and I felt compassion for her and amusement at her need for silly rules.

It felt good to feel for her instead of hating her in my mind. It felt good to defend my doctor when someone was telling me a story about how stupid he is. It feels good to open the curtain and find the similarities, not the differences. It feels amazing to see my providors as peers, not superhuman. I feel connected to them, I feel compassion for them, I feel in awe of them. They are me but with a different job description.

Us patients put professionals on a pedestool. Let's take them down from there--it only causes resentment and disapointment.
Professionals, take a chance on us and let's change the culture of healthcare.

In the meantime, I am so happy I got a look on the other side of the curtain. I like my healthcare better when it's humanized.

XXOO
With Gratitude!

Friday, August 15, 2008

A General Update

Hi all!
I got back from California a week ago and I am just now feeling somewhat like a human being! Boy, that trip took it out of me!!

I did my one woman show-like thing, "The Permanent Me" on Friday night, August 1, and it went over well. There were a few major technical glitches but nothing that brought the show to a screeching halt. I was super nervous before I got on stage--the computer seemed like such a major unpredictable variable and that made me more nervous than anything.

For those who don't know what I'm talking about, this show contained over 200 PowerPoint slides, each with it's own sound cue. Most of which I recorded myself as my British "higher self"! The idea was that I was having a conversation with my higher self at each stage of development--junior high, high school, pre-transplant, and post-transplant.

I am so proud that Dr. Julie Desch, a physician, mother and wellness coach WITH CF, wrote about "The Permanent Me" on her blog: sick and happy. She amazing and I am honored that she kindly wrote this:

"Tiffany Christensen, author of “Sick Girl Speaks!” gave an amazing presentation at the start of this weekend’s conference in Redwood City, California. As she chronicled in a deeply moving and occasionally hilarious one woman show, having CF can be an incredible tool to use when “finding the permanent me.” Tiffany embodies positive psychology. It is people like her that I want to learn from, and write about in these posts. "

Wow. Thanks Julie!!! Likewise.

Doing this presentation has inspired me to infuse more of my theater background into my talks. Not all of them will have costumes and talking computers, of course, but dramatizations can be powerful. With my acting background, I have an opportunity to use those skills to make my talks more interesting. Until now, I have shied away from that but I shouldn't. It takes guts to go out on a limb like that and I need to trust myself to pull it off.

After the conference, I went to the CF Adult Retreat. Like Vegas, what happen at retreat stays at retreat so I can't go into detail!! :) Suffice to say, it was everything you could hope for--big highs, big cathartic lows and good, amazing new friends. I never thought this would be my kind of thing but I am so hooked--I can't wait to go back next year. For all my CF readers, please consider going next year. It is truly life-changing and uplifting. They have cross-infection safety issues down to a science and I felt very secure all week, even as an immune-suppressed chick.

Things continue to go well. I have two big grants with Project Compassion in the pipeline for next year. Please keep your fingers crossed for those!! I continue to book talks--mostly "Life in the Death Bed." That one has taken off and I couldn't be happier. I love giving this talk!!! Soon, I will be offering a mini-documentary on my website which features me doing "Life in the Death bed" at a Hospice in Pennsylvania. Keep an eye out for that DVD as well as "The Permanent Me" DVD which should be available in the next few weeks.

I am thrilled to say that I was invited this week to do "Life in the Death Bed" at John's Hopkins Hospital! Wow! What an honor!!!

Ok, that's all for now. Thank you for your continued support!!
Wishing you all the best for the remainder of the summer!!!

Friday, August 1, 2008

Warning: Level Orange

Here I am in sunny and wonderful California! Yay! I love it here so much. Tonight is my "One Woman Show" at the CFRI Conference. I'm not going to lie--I'm nervous. I'll let you know how it goes.

Yesterday morning (at 5:00 am!) I was making my way through airport security. At the beginning of the long line of sleepy passengers (boarding pass and ID ready) was a large sign.

Warning:
Level Orange
Strong Possibility of a Terrorist Attack

I read that sign and looked around. Nobody batted an eye. Nobody recoiled in fear and decided not to board the plane or leave the building. Nobody changed their plans because there was a strong possibility of a terrorist attack.

It dawned on me that this mentality is very similar to living with a chronic illness. You have a large sign in front of you every day that reads:

Warning:
Level Orange
Strong Possibility of Catastrophic Illness

Those of us with chronic conditions know that at any moment we may be attacked by bacteria, inflammation, cancer...the list is endless. For me the terrorist at the top of the list is chronic rejection. But what should you do about it? Should you drop everything and leave the building, hoping you can find a place to hide? Illness can find you no matter where you go, there is no sense in running.

So, like the passengers at the airport, we read the sign and continue going where we want to go and doing what we want to do. We know that we live under a level orange warning but there is no reason to dwell on it. If and when the illness terrorist arrives, we will deal with it then and hope that the damage will not be too significant.

I, for one, will not let a level orange stop me from flying. Will you?