Thursday, November 27, 2008

Thankful

I hope it goes without saying that I am thankful for more things than I can possibly ever express. 2008 has been the most exciting year of my life and things continue to progress. I have already received word that Project Compassion and I were awarded funding to expand our work with the "Finding Your Voice" project. More and more speaking opportunities are coming my way. The universe continues to convince me that I am on the right path.

It was only 4.5 years ago that I was unsure if I would live another day. It was only 4.5 years ago that I was mourning the things that would never be. As I grow closer to my monumental 5/9 year anniversary post-transplant, I am in awe of the shape my life has taken.

So, I am thankful and without words. "Thank you" is a phrase you hear every day. "Thank you for handing me that napkin," "Thank you for holding the door open," "Thank you for making my cup of coffee."

How can I use this same phrase when I am expressing my gratitude for the families who lost a loved one and chose to help others despite their own pain with the gift of donation? How can I merely say "thank you" to my parents, my family and my friends who sat by me, took care of me and struggled to say goodbye too soon? What does "thank you" really mean to my healthcare team who has sacrificed countless hours to save the lives of people like me?

Somewhere, someday, I hope I discover a phrase that is more powerful and more representative of the passionate gratitude I feel in my heart for everyone who has made my mere breath a reality. "Thank you" just doesn't cut it but it's all I've got.

So, thank you.

Sunday, November 16, 2008

The Thin Line of Humor

This year I have had many healthcare professionals and students approach me to discuss the issue of humor when caring for a patient. They noted that I used humor in my talks and wanted to know how I felt about them adopting a similar lightness when doing their work.

It is undoubtable that some of the funniest moments in my life have come out of dark circumstances. I can think of many occasions where my mother and I were doubled over laughing about a hospital comedy of errors or the hilarity of my disgusting bodily functions.

With that said, I have come to find that when one chooses to engage a patient with humor, there is a very thin and unpredictable line that must be minded.

Midnight Mishap
A week after my first transplant I was taken out of ICU and put on a "surgery step down" unit. This meant that I had highly skilled nurses but I wasn't being constantly monitored and my nurse had around five or six patients to attend to, instead of the ICU nurse who only took care of me. I will breathing on my own but still very weak. I was unable to move without assistance because I still had four chest tubes in and those were attached to two large and cumbersome boxes.

One night, I woke up and had to urinate. I tilted my bed up in order to call the nurse for help. Somehow, the cord to the call bell had been wrapped around the bed rails in such a way that as the head of the bed tilted up the cord pulled out of its wall socket. I was in a corner room, far away from the nurses station. I was in the dark and had no way to get up or call for help. I was stuck and had a very strong aversion to wetting the bed, for obvious reasons.

My mind went into overdrive and I contemplated yelling out, trying to maneuver my IV pole and the two chest tube containers or picking a spot on the bed to wet. None of these seemed like a good or enticing idea. Suddenly, I was jolted with clarity and leaned over and picked up the phone. I dialed the hospital operator and asked for her to connect me to the nurses station in the surgery step down unit. The operator told me that was not a number they are authorized to connect to and she could not put me through. I calmly told her that I was a patient on that floor and that my call bell had been pulled out of the wall. In response to her shocked silence I whispered "and I have to pee."

The operator was emphatic in her apologies and hung up with me immediately to call the nurses station. Apparently, she had called the wrong one, one that was on the other side of the floor. After some arguing with the operator about how she did not have a patient with that name, it clicked that perhaps the nurse should check the other side of the building. Like a team of wild horses, nurses descended on my room in flash of panic and efficiency. The lights were on and I was safely in the bathroom within seconds of their arrival.

Coming out of the bathroom, I was met with several pairs of worried and searching eyes.
"Are you ok?"
"How did that happen?"
"I am so sorry."
With each apology, the reality of what had just happened hit me and I was hysterical. Hysterically laughing, that is. My laughter was soon contagious and we all enjoyed a good round of "Can you believe..." and "then she said to me..." and "remember when you said..."
It was a great moment of joy followed by days of recounting the indecent to everyone who entered my room. The story became a legend and we all benefited from its humor.
Sometimes crazy stuff happens in the hospital. Hopefully nobody gets hurt and it can serve as needed amusement.

Smurf You
One side effect of severe lung disease can be a blue tint to the lips and fingernails. A friend of mine was complaining about how sick she had become of the blue tint and how much she looked forward to transplant returning the color of her skin to its rightful pink.
In response to this, one of her friends decided to make a joke to cheer her up. She began to laugh and talk about how my friend was lucky because she looked like a smurf and that smurfs were really cute.
Sometimes, when things are really hard jokes just aren't funny. This was one of those times. My friend did not laugh and the awkward moment could have been cut with a chainsaw.

You Had to Be There
At some point after my second transplant, I had the brilliant idea that I should try writing a one-woman show about illness and dying. The catch? I wanted it to be a comedy.
I enrolled in a stand up comedy class where myself and seven other novices tried our hands at the most difficult performing art imaginable. I discovered quickly that I was not a natural comic but that didn't stop me from making life harder on myself by attempting to write and perform bits about wearing oxygen and alost dying. Yes, I'm nuts.
As I stood up week after week in front of my class of healthy bodied adults, I bombed over and over. Even when I thought the material was pretty hilarious the audience's response seemed to be complete shock and confusion. Is this funny? Should I be laughing? How can it be supposed to be funny when she's talking about dying?
After some painful nights of failed comedy it dawned on me: illness humor is completely an inside joke. The only people I have ever really been able to laugh with about being sick are my fellow sickies, my family and my caregivers. Otherwise, to the average healthy person, it's just terrifying.

What I Know Now
Because I now know that illness is an inside joke, I also understand that each person's illness contains it's own specific inside humor. Unless I know someone very well, I will not joke about their ailments. Sure, hemorrhoids might be ripe for the comedy pickings, but to the person dealing with hemorrhoids it's quite likely it won't feel like a laughing matter.
Err on the side of caution and keep the jokes to yourself. When you realize you are in the inner circle, then and only then will it be safe to make light of serious stuff. Some days it's true what they say, laughter is the best medicine. That isn't always the case, however. Sometimes crying is the best medicine too.

Saturday, October 25, 2008

The Language of Illness

Since I can remember, the words "handicapped" and "disabled" have made my stomach turn. I have never used those words to describe myself, even at a time when I had a handicap placard and very much fit the definition.

I chose the title of my book, "Sick Girl Speaks!", as a tongue and cheek way of asking what does being a "sick girl" look like?

Recently, I began noticing when I said things like "my CF" or "I'm a lung transplant." Is it my CF or THE CF. Am I a lung transplant? No, I am a person who had a lung transplant.

The use of language in relationship to illness fascinates me. What words do you embrace and which do you shun? Why? Do you think the little words we use, like "my" CF instead of "the" CF make an impact on our psyche?

I can't wait to hear everyone weigh in.

An Honest Look

Last week, I was talking to a nurse practitioner who runs a local health clinic. It was my job to take the concerns and critiques from those who frequented this health center and present them to her. From there, I was to come up with various angles on advocating within this system.

Jenny, the nurse practitioner, is a beautiful, kind and dedicated caregiver. She has been working at the same place for roughly twenty years. Her passion for her work and her desire to make the clinic as effective and patient-centered as possible is crystal clear.

After collecting my surveys from the patients, I went in for my meeting with Jenny armed with three pages of issues to discuss. This clinic has a stellar reputation and many of the surveys cited no complaints and that the staff should be "given a medal for sainthood." Many of the issues were simple misunderstandings and Jenny and I moved through them quickly, feeling gratified that we could clarify things for the patients.

There were one or two complaints, however, that were more serious. Accusations of over-medicating geriatric patients and a few stories of visits gone awry. I thought nothing of this before the meeting but when I presented these few complaints to Jenny her faced changed in a way that seemed very familiar. We kept talking but the back of my mind wanted to store that look on her face to revisit later. I knew I had seen that face before.

As I drove away after our meeting, it hit me almost immediately. There, in front of me, was the face I had seen my mother make too many times. I had seen this face on other mothers as well. It was the expression you see when a child tells their mother "I hate you" or "you don't care about me!" The face of a person who has given everything, sacrificed themselves more than anyone could ever know, only to be told that it isn't good enough.

Jenny's facial expression matched that of my mother when I was in my nasty teen years because, like a mother, she had dedicated her life to these people and given her heart to her work. To discover that some people did not see her sacrifices but instead had only criticisms, well, it broke a piece off of her heart. The face I was seeing was a person crushed by lack of appreciation.

How often does this happen in the world of healthcare? I would venture to guess it happens on a regular basis. With Jenny in my mind, I began to think about the healthcare professionals I had put in my critical sights. I thought of "Betty," the transplant coordinator I wrote about in "Sick Girl Speaks!" Betty was the one who told me to forget about a second transplant and prepare to die. When "Vicki" took her place and offered me a chance on the list, I immediately began to attack Betty for her lack of foresight, compassion and energy. I accused her of being lazy and of not caring about her patients.

Seeing Jenny's face made me think back to those criticisms and I had to ask myself if those things I believed about Betty were really true. I had to admit to myself that I could never know the reasons Betty did what she did and therefore, I could never know if my judgments of her motives and character had any merit whatsoever. I imagined Betty's face as she read my book and felt remorse. What if she believed what she told me and she thought she was doing the best thing she could by telling me the truth? What if I had crushed Betty with my lack of understanding and appreciation? What if I had been entirely unfair?

And so it is, my continued journey into transforming my perceptions of healthcare professionals. Because we all carry the banners of "us" and "them" in our current healthcare culture, making bold and hurtful statements like mine comes to many patients easily. Too often my caregivers appear as the enemy, especially when they deliver news I do not want to hear in a way I do not want to hear it.

So, to Betty and others, I apologize for my bold and possibly false assumptions. To Jenny, I thank you for letting me see the disappointment that comes when dedication meets disapproval. When I find myself blasting my doctor or my nurse in the future, I will think of Jenny's face first from now on.

Humans. I am finally seeing my providers as humans. How strange that I have accused them for so long of seeing me as an object, an "it", only to discover that I have been doing exactly the same thing myself.

Compulsive Positivism

I spend a lot of my time talking to healthcare professionals and students about offering "honesty when honesty is requested." I ask that they begin to consider that a person can find joy no matter the physical issues. I preach that they should give us patients more credit and not automatically assume we need coddling.

But, then, there I am talking to a fellow CF/Transplant buddy who is facing rapidly progressing chronic rejection and I can't stop sugar-coating, pitying and coddling without provocation. My mouth is spouting some dramatic declarations like "maybe this is the worst of it and things will get better from here" and the back of my mind is yelling "will you shut up? he doesn't need your half-baked reassurances!"

This person, Tom, was speaking to me in part because I have been to a similar place. I have had chronic and I have had to weigh my options while watching the important numbers on the pulmonary function tests drop and drop some more. Tom didn't want sugar, he wanted truth from someone who has been there and could talk about the hard stuff most people would run away from. But, in my own way, I ran away too. I just couldn't stop with the platitudes.

What happened to me? Why was I powerless over my compulsive positivism? What is it about human nature or this culture we live in that is so firmly embedded in our DNA that even when we want to "get real" we somehow find our mouths filled with sugar, telling tales of lightness while standing in the middle of darkness?

I am sorry, Tom. I feel I let you down. You asked me for an honest ear and instead I bulldozed over you when you tell the truth of your anger, your fears and the reality of your physical body. Instead I offered up inane ideas like "maybe the tests are wrong" or "you feel that way now, but I'm sure you'll feel better tomorrow." What kind of friend am I? One that wasn't able to deliver on the promise of being a safe place to fall.

Where did this need to make it all better come from and how do I stop it?

Monday, October 13, 2008

Sick Girl Speaks Some More

I have toyed with the idea of writing another book. In fact, months ago I made a big announcement that I was "pregnant" with literary child. That book was a fine idea but one I failed to follow through on.

So here I am again. Deciding that I am ready for book # 2. Will it happen? I hope so.

"Sick Girl Speaks Some More; Building the Bridge in Our Medical Revolution"

This book will focus on things I have learned this year by poking my head behind "the other side of the curtain." There are things I know now that I didn't know a year ago. There are things in Sick Girl Speaks! that I would like to get more specific about or clarify. There are topics I didn't explore that I would like to now. There are some issues I feel more brave in talking about and some I feel more humbled by and would like to approach with more balance and compassion. Overall, I will continue to focus on patient advocacy and providing a window into the patient experience. In addition, I would like to find ways to remove the "us" versus "them" mentality from my work, and ideally the entire culture of healthcare, so that we can move forward as humans in this medical maze together.

I have learned so many things this year. I will learn many more next year. Maybe next year's book will be called "Sick Girl Speaks Again." Who knows? For now, I am aiming for a December deadline and a new book to be out in early 2009.

No promises but it sure makes my mouth water just thinking about it.

What do you think? Would you read another book like "Sick Girl Speaks!" ?

Sunday, October 12, 2008

LOL...or no?

This isn't really an illness related post. It's more a "I'm new to this whole grown up thing" post.

So, I know how to be formal and professional. Unlike many of the youngans today, I know how to send a proper email/letter with commas, capitalization and periods. Yea me.

When I write friends tho, (example) I enjoy the new abandon of all of the grammar formalities listed above. i write like this lol

So, here's the thing. Writing emails (as with writing letters...but they are fast letters) has drawbacks. The biggee is that they have the possibility of being misinterpreted. My tone might be simple and include straightforward questions but it could be read as rude or impatient. This is partly why the :) has become so popular. You know I'm writing a joke when the sentence is followed by a :)

So, I have more and more emails every day with people I barely know but really like. People who are booking me for things or helping me make important contacts. I use :) pretty quickly, like maybe 4th or 5th email into a conversation with a new person. I am finding myself really wanting to use LOL now.

Is it ever appropriate to use LOL in a professional email? If yes, in what circumstances? If no, what about :) ? Is that innapropriate?

Our world is changing. The younger generation doesn't even know what a cover letter is and people older than me don't know what btw means. I feel stuck in the middle of a transforming email culture.

Any protocols or are we left to our own ediquette devices now??

Tuesday, October 7, 2008

Right to Refuse or a Ruse?

In looking at Patient Advocacy, I have begun doing some research into the "Patient's Right to Refuse" and it has been both fascinating and scary.

Is there truly a right to refuse if doing so may result in "non-compliance" or "Against Medical Advice" being noted in your chart??

For those who don't know, being labeled "non-compliant" or being noted as going A.M.A. can result in a physician's refusal to treat you down the road. If it has been documented that you have not complied with medical regimens or medical orders, this gives the docs grounds to say that they won't do surgery on you or give you other kinds of therapy because you won't be responsible enough to care for yourself and follow orders.

While this makes sense on the one hand, it worries me to know that one day I might refuse a useless and unneeded MRI only to later find myself as labeled "non-compliant" or, worse, AMA. What if I chose to not have the elective stomach surgery the docs told me they wanted me to have? Would I then be non-compliant? AMA? I can't afford to take those risks but I also can't afford to follow every medical order blindly.

Here's the crazy part--these terms, non-compliance and AMA, have no real guidelines. They are arbitrary and rest in the hands of each healthcare professional to use at their discretion.

Is the Patient's Right to Refuse a right or a ruse? Is elective surgery elective when your doctor tells you to do it? Where are the lines? Why aren't there clear guidelines for doctors to follow? Why are these potentially powerful labels so ambiguous? Isn't that dangerous for us patients? Doesn't that leave us at the mercy of personalities and moods instead of protocols and thought-out boundaries?

Please weigh in on this topic!!

Saturday, October 4, 2008

Once a Patient, Always a Patient


With all of the good fortune and running around I do, I must admit, these transplanted lungs let me forget from time to time that I was once a "sick girl." Now I'm more often the "speaks" than the "sick" in my blog title. That is good. That is wonderful. I don't know why I get to be so lucky to have moments, maybe days?, where I feel like a healthy person.

Having said that, there are times when being a "sick girl" floods back to me. Sometimes it comes in the form of an overwhelming memory. A smell, a story or being inside a hospital can transport me back to my sicker days in an instant.

And then there are the moments of worry--that internal evaluation and diagnosis that never seems to completely turn off for us frequent fliers. Often, this worry can be scary; "Do I have Chronic again?" "Am I getting sick, is it pneumonia?" "Is that pain in my back from my kidneys--are they finally giving out under the weight of these medications?" These are not uncommon thoughts to be running through my mind and certainly they are unsettling.

Sometimes, however, even I have to laugh at my internal evaluation and diagnosis.

I was driving down the highway the other day and I felt a cold sensation in my left hand. At that time, I weaning off of my blood pressure medicine and my thoughts immediately went to the connection between my left hand and my heart. I took my hand off of the steering wheel and the sensation went away so I decided the symptoms were positional. For the next few minutes, I experimented with my hand in various positions; above my head, on my lap, out the window etc. The only position that produced this symptom was on the steering wheel.

As I contemplated the symptoms of a heart attack and wondered if a positional cold sensation was a lesser known beginning stage to cardiac arrest, I looked at my dashboard. This was a hot day, the first in a week, and the air conditioning unit's fan was blowing directly onto my left hand. The "positional cold sensation" was the air conditioning--an external sensation, not internal!

I laughed all the way home. What a dummy, right? No. Not really. When you have been down the illness road, you never let go of the internal evaluation. When you want to be a proactive patient, you look for warning sides. When you love life, you want to protect it. And sometimes, during your investigations, you make the kind of error you are happy to make when the air conditioning fan is blowing on your left hand.

Being a patient is strange sometimes!

Do you have any stories of illness investigations like this one? Do you have other stories in which it turned out to be something and you caught it by being aware? I would love to share stories like these with professionals and students to help them understand the internal evaluation process that becomes second nature to those of us with illness.

Please share your stories with me and I will share them with those who need to understand what life is like when one is Once a Patient, Always a Patient.

Wednesday, October 1, 2008

Tuesday, September 30, 2008

A Confident Necklace


A few months back, I bought a big, chunky bright yellow necklace (shown above) as a part of a costume. Some may say it's ugly, but I like my "Target Special" plastic adornment. Come to think of it, it looks like a Betty Rubble necklace...sorry, I digress.

So, I have often held this necklace in my hand and pondered wearing it out of the house. Until today, I have always put it down. It just felt too big, too bright, too scary. Would people think I was a fashion disaster if I wore it? Would people secretly snicker behind my back after I passed by? Would I look like a fool in my Betty Rubble necklace?

Today, I wore the necklace out of the house. To a meeting, to the store, to the post office, to work and to another meeting. A few people made comments like "that's a necklace!" Compliment or snide comment? Who knows. But here's the fun part...I didn't care.

Why is it that today was the day when I was feeling confident enough to wear the bright boulders around my neck? Why did I have enough self-confidence today to do what I wanted with little to no worry about other people's opinions? Why today?

As I asked myself that question, it occurred to me that I have spent years of my life talking about balance. Finding peace with the roller coaster of life. Understanding that sometimes things are going your way and other days you can barely find your way out of your own front door.

Why, then, have I left my own self-confidence out of this equation? Why must I strive for balance, acceptance and understanding about all of life's cycles but not my own level of confidence? Why have I always assumed that confidence is something that should be static, steady, unchanging? What in life is static, steady and unchanging anyway? Where did I get this idea--some guru? Myself? Oprah?

I don't know where I got the idea that self-confidence should never waiver but I am now rethinking this idea. My necklace has proven to me that my level of self-confidence varies--should I A. be upset about this fact or B. just accept it? I'm going to have to pick B.

Thank you big, yellow, chunky Target Betty Rubble necklace. You made me rethink a thought I never even realized I had. I promise, I won't judge myself on the days where you just look intimidating. At the same time, I will enjoy the days when I am confident enough to wear you without fear!

Lessons come from amazing places, don't they?

Tuesday, September 23, 2008

Confession


I forgot I had a blog. Seriously. Sadly. For real.

I have been so busy the nagging thought in the corner of my mind that tells me to blog just up and went on vacation.

Working on 2 big grants for next year in between speaking engagements and other projects. Oh, yea, and trying to have a life and spend time with hubs. Haven't even seen my family in weeks! (Unless you count the ones who show up at my workshops:)

Not complaining, just explaining.

I am working really hard to not be stressed by all that is going on. I am trying that "stay in the now" thing and so far, I'm doing pretty well. I am trying not to say to myself "I am so busy" but instead just focus on one task at a time. That's all I capable of anyway so why bother projecting myself into the future and worrying about it now. How Zen of me, huh?

Anyhoo. Sorry I forgot about my blog for a minute. I'll be back in full force after this week. (I hope)

In the meantime, I provided you with an awww photo above. Two of our friends came to visit and brought their Greyhound, Twilight. She is so sweet and, after some snarls and growls, Emily decided she was sweet too. I think Emily actually recognized the family resemblance! Emma being a Whippet, she was a miniature version of Twilight and would often walk back and forth underneath Twilight's belly. It cracked us up. Hence, the photo above.

With love and Gratitude!

Thursday, September 18, 2008

Love Hurts!

So, I tried out the old stand up comedy thing last week. Ouchy. Me not so goody.

It's way harder than it looks...and it looks really hard to me! I think some people are just born with that kind of "set up, stick a joke" brain. I am not, apparently.

Don't worry, I'm not mad at myself. I know there's a possibility I will get better with practice. There's also a possibility that I will learn a productive lesson about my weaknesses! That would be ok too. Right now, I'm just a wide-eyed child in a world of comedy wonder where the people are 10 feet tall and I have no idea if I will ever grow up that big. It's a real fish out of water thing and I like it. It's shaking up my insides.

So, I go again tonight. Last week, I didn't really do much with the health jokes. Mostly I just went for the obvious and made fun of my town, the people in it etc. Tonight, I'm going in with some health jokes. I may have someone tape it. Not because I'm gonna rock but because I think it would be entertaining to watch a non-comedian try to do comedy. Or would it just be painful??

Either way, I haven't decided if I'm gonna let someone tape it yet. If I do, I may just upload it to the blog tomorrow. See, that's how much I love you guys...

Until then, face your fears and do something that makes you want to puke. (Misery loves company, and I'd like some right about now!)

And speaking of videos, I now have a Mac and am attempting to edit my 2 talks "Life in the Death Bed" and "The Permanent Me". I'll let you know when I get those up and on my website.

XXOO
:)

Thursday, September 11, 2008

An Old Love Made Anew

I mentioned in my post about "The Permanent Me" (which is now on sale on DVD at CFRI.org) that I was beginning to explore the value of using my past actor training to make my talks a little more dramatic and hopefully more powerful. Well, I have held true to that promise and man, has it been a blast!

Last week I teamed up with an awesome Duke Palliative Care Doc, Tony Galanos, and we did a real live improv for about 100 nurses. We were the entertainment for the night so it had to be fun but we couldn't miss the opportunity to convey some messages. Dr. G and I were super nervous (OK, I was, you'd have to ask him how nervous he was feeling) because we had never rehearsed and we had no idea if we were about to b.o.m.b. The crowd was great and we had them rolling with our silly improvs about life in the medical system. BUT, at the same time, we took pauses in between each improv to check in with the audience and see if they learned anything from watching the improv. I was thrilled to see that we weren't just having fun--they gleamed some really amazing lessons from the exercises. Win, Win!!!

I have really been riding that wave of joy for a week. It felt so great on so many levels--we had fun, we had a message and...maybe best of all, I was collegues with a doctor. That huge patient/physician barrier had to be torn down so we could work together as human beings. The audience was struck by it, this rare sighting of a doctor and patient with no sense of "superior" and "inferior." I had to pinch myself to make sure it was real. I'd say, at the risk of exagerating, it was magical. Thank you Sandi for booking us! Thank you Dr. G for going on that wild ride with me and making it so much fun!!!

This has taken me in two directions. 1. I am hungry for more opportunites like this--to improv, to act and to bring my messages to the right people through fun and humor. 2. It has made me more passionate about openeing the curtains and humanizing mdicine, as I talked about in a previous post. A friend told me recently that Quakers (I hope that's right) do not have titles such as "Sir" or "Maam" and they do that because they do not see one person as being any better or lesser than the next. These titles alone put us in positions that take us out of our own humanity. Add to that all that we are taught about the titles and you have...well, me. I'm a good example of a perfectly competent human being who has believed for her whole adult life that she is inferior without any alphabet soup after my name. I deny what I know and replace it with the opinions of others because I see them as better than me. I do not recognize my worth because I let others tell me what I am worth based on our society's labels.

There have been many gifts of this work I am now doing. One of them is in reassessing the ideas I have about my value in relation to those around me. The improv with Dr. G was a huge, huge step on this journey to walk beside people, not behind or in front of them. I am so grateful.

In addition, I have challenged myself creatively. Tonight, I start my first stand up comedy class. I feel queasy every time I mention it! I do not see myself as a funny person. Certainly not the kind of funny where you stand alone on a stage telling joke after joke. Ah, I feel sicker.

So why I am I doing it? I have had a dream for years to write my own one woman show. I want it to be about the illness journey but I want it to be universal enough and funny enough that it's not just for patients or professionals. I want to reach everybody. Gulp. So, tonight I have to present 2-3 minutes worth of material. I am terrified and excited. If it goes ok, if it's not just the worst thing anyone has ever seen, I am going to video it in its developement and upload those videos here. We'll see!!!

I hope you all have a wonderful week and do something that makes you queasy too.
With Gratitude!
Tiff

Sunday, September 7, 2008

A Three-Legged Table

Pictured above: B, left and Emily, right at our commitment ceremony.

Last week, my step-dog passed away. He was an old boy...171/2. He was a big dog and by the time I met him 3 years ago, he was already well into his geriatric years.

This dog, B, did not play with toys. He did not give wet kisses. This dog did not sleep in the bed or cuddle close on the couch.

He was not my dog until 3 years ago and I feared his loss would not be painful enough for me--how would my husband feel if I did not properly mourn the loss of his faithful companion?

Last week we lost B and now I find myself feeling lost too. I did not know until he was gone that he filled the entire house with his life-force. I did not know that a dog with no toys, who rarely kissed or snuggled, could take up so much space.

I did not know how much I loved my step-dog until I felt what I feel now as I miss him. The world looks different without my step-dog, B. It is quiet and lacks structure. Our family was once a four legged table. Me, my hubbs and our two dogs. Now, we are a three legged table and I feel unstable. There is no replacement leg for our family table and we are learning how to live life leaning to the side.

There was never a dog like B, I can assure you. There will never be a boy like B again. I am only happy to have had 3 years with such an extraordinary dog. He is missed.

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?


Sunday, July 27, 2008

Re-Entering the Atmosphere


Anyone who knows me knows that I am addicted to two things, coffee and television. If you read this blog, you will know, I have recently weaned myself off of coffee. And if you live with me (hmp, hubby) you know I cheat sometimes. But I drink waaay less than I used to.

BUT! Unlike coffee, television is not something I have any interest in giving up. Some people drink a beer at the end of the day to relax. Some people take a walk to wind down. Some people cook a big meal to chill out after work. I watch TV. If I'm sad, if I'm bored, if I want to relax or get out of my head, I turn to my old pal, the TV.

I was reminded this weekend of the time immediately after transplant (both of them) when I turned my television off. I would try to watch it but it was unbearable. The silly banter, the mindless "probing hot topics," the unfunny jokes and the actors taking themselves way too seriously...I just couldn't stand it. TV ceased to be entertaining, instead it was maddening.

There is a time after a major medical trauma (or other life event) in which the way we live our lives suddenly seems very superficial. There is a need to express and discuss a deeper reality of life--the realities that come when you face death and are trying to re-acclimate to life on earth. The world has changed colors, and as our rocketship barrels towards the earth's surface our life is unrecognizable. To not discuss the descent to earth would be like not aknowledging a stick in the eye.

Our society is not very good at accommodating those who are trying to re-enter the atmosphere. I remember the December after my first transplant, I accompanied a friend to a work Christmas party. The usual "What do you do?" and "Where are you from" and "How do you know so-and-so" ensued. I just couldn't play the game. As much as I wanted to be superficial, I just couldn't and I would answer the questions honestly. "I am not working right now, I am recovering from a lung transplant" was the beginning of the end of my new conversation. The party-goers were clearly not expecting that response and they compensated for my uncomfortable honesty with an even broader, faker smile. They did the best they could to bypass any more transplant conversation and made excuses to leave me standing alone with my eggnog.

I'm not bashing people. I understand this was not normal party conversation and why they would want to exit stage left. We just aren't trained for this type of honesty in our culture.

What I do want people to understand, though, is the dilemma that faces those of us who are attempting atmosphere re-entry after a major medical intervention. We have two choices: watch TV or turn it off. Grin and grit our teeth through what feels like an unbearably phony conversation or keep it real. For me, the choice was simple. I had to speak my truth--not out of some superiority or judgement--but because it was all that seemed to matter at that time. Not talking about my transplant would make me disapear.

So, if you find yourself at a party and you spot someone alone with thier eggnog, take a moment to pause. Perhaps you have spotted someone who is attempting to re-enter the atmosphere after a medical problem, divorce, death of a loved one or any other life event that is too real to ignore. If you're brave, maybe you can walk up to them and ask "What do you do?" and expect to hear the truth as it sounds when someone has turned off the TV.

Saturday, July 26, 2008

Thank You


I have received many very warm and very celebratory emails and comments regarding my 35th birthday. Because my mother's "write a thank you note" lessons did not stick, I tend to be very slow and disorganized about responding to such wonderful well wishes.

I want to sincerely thank, from the bottom of my being, everyone who sent me Happy Birthday wishes. It is the people in my life that make 35 so amazing (that and the not being dead part). So, thank you thank you thank you for being a part of my life and for being kind enough to care that this old gal just racked up another year of living.

I have added the picture of the Butterfly Girl because it couldn't express how I feel more if I had drawn it myself. (I bought it off of istockphoto.com--very cool site) Butterflies are the symbol of lung transplant for a good reason--we spend years locked inside our illness cocoons, waiting for the day we can fly. When the donor lungs come along, we begin the slow process of breaking through that cocoon and, when we do, we have emerged transformed. For the first time in my life, I could really fly. Today, I am the Butterfly Girl with arms extended to the heavens with gratitude and overwhelming joy. I am flying freely and often now and I am so happy you are with me on this leg of the journey.

With all my love and gratitude...

Opinions, please!

Hi all!

Boy, things are buzzing here. Busy busy busy. I am so excited about the work I've been doing and equally excited about some ideas I have for the future. They are top secret but, hopefully, I can tell you by the end of the year. Oooooo. Aren't I so mysterious? :)

So, I got a spur of the moment yearning to change my website. I'd love your feedback. It is very different than before. What do you think? Help! www.sickgirlspeaks.com

Sadly, that's all I have in my blogging bag of big ideas for now. I know I have been slacking again. Sometimes, I just don't have much to say!

Hope you're having a happy weekend!

Wednesday, July 16, 2008

35: A perfectly imperfect life.


Tomorrow I will be 35. I never thought I would make it to 35. I almost didn't. I am so grateful I tear up every time I think about it.

26 years with CF lungs. They were difficult but they got me through the hardest part of life--adolescence.

4 years with my first set of donor lungs. They may have failed me eventually but they also taught me the greatest lessons of my life--The Divine Healing of Dying, That Which Is Important and acceptance in the truest meaning of the word.

4 + years with my beautiful, healthy second set of donor lungs. Since March 2004, my life has blossomed in a way I never could have imagined. My sweet husband, my exciting new career, my amazing experiences of living with a healthy body and love. Lots of love from old friends, family and my new friends I have met in this latest leg of the journey. I am truly the most lucky human ever to walk the earth.

Even if tomorrow was my last day here on earth, these 35 years have been so full and intense and breathtaking, I could never cry a tear for my departure. I have lived. I will continue to live as long as these lungs and this body will allow. I am profoundly and completely grateful.

Some people feel sad for the days they grow one year older. I rejoice. 35. 35 feels like such an accomplishment. Such a gift. A gift I never thought I would ever open and one that took great effort on the part of so many people.

Thank you first, to my family who have traveled with me on this journey to 35 since July 17, 1973.
Thank you to my doctors, surgeons and nurses (Becky in particular) who have kept me well and saved my life...many times.
Thank you to my donor families for making the choice to let another live even during the time of great loss and grief.
Thank you to my husband for being so kind and making my life complete.
Thank you to my dear friends for holding my hand when I have felt weak and running with me when I was strong.
Thank you to my therapist who has kept me sane when life got insane.
Thank you to James for taking a chance on me, providing big opportunities and becoming my creative soul mate.
Thank you to everyone who has made my life richer, bolder, sweeter, funnier, happier and more meaningful.

I truly have so much to be thankful for. 35. What a wonderful age. What a wonderful year this has been. What amazing goals and plans I have on the horizon. What a perfectly imperfect life.

35. So sweet.

Friday, July 11, 2008

A Convention Center Filled with Gratitude

As I went rushing out the door from my office, I felt the familiar wave of dread--I was running late for a very important meeting.

It had been one of those days--every traffic light turned red just in time for me, the printer jammed every time I needed something quickly, the internet went down and I had no access to emails...yea, one of those days.

When I got to the hospital parking lot, I had made up just enough time that if I found a quick parking spot, I might make it right on the nose. Well, since it was one of those days, the hospital was having a parade for the children and the only parking left in the deck was on the top two levels. Making my way up was slow, to say the least. Happy parade attendees meandered in front of my car and the line of cars in front of me happily stopped to talk to people walking by. By the time I got to the top, I was banging the steering wheel in frustration.

I unloaded my stuff and ran for the elevators. You guessed it, they were very slow.
When I was finally delivered to the hospital hallway, I made a dash for it. My calves were killing me--those high heels are not meant for standing much less running.

As I cursed the heels, the lights and the slow parking brigade, I was suddenly struck so hard that I nearly fell down. I was running to my meeting. Running to my meeting. In heels. My calves were the problem, not my lungs. My lungs barely noticed the pace. I was running to my meeting and I was humbled. I was grateful. I was fully aware that if I was late to the "very important meeting" that was really ok.

These moments of gratitude in the midst of the rat race are so profound and beautiful. I feel like the luckiest human being on earth.

Today, I am going to the Transplant Olympic Games and I will share a booth with Ana and Isa. I will be surrounded by those touched by transplant--recipients and donor families. I am so honored to be surrounded by these special people. I look forward to a convention center filled with gratitude. I can't imagine anything more powerful than that. Can you?

Saturday, July 5, 2008

Children of Dying

As I find my way down this path of public speaking, my opinions, my topics and my style continues to evolve. The truth is, I am happy with the work I am doing but I feel that it has not yet reached the potential of where it needs to be...in all aspects.

Specifically regarding the content, though, I feel a deep rumbling inside me (and it's not my lunch) of ideas that are forming, attitudes that are sprouting, a message that is waiting to be heard. I feel in my guts that I am on the beginning of this journey and there is so much more to say that I don't even know how to put into words yet.

I was meditating the other day (yes, I am doing my homework and "finding the way back to me") and I think I heard a few whispers of that which is bubbling inside.

I have many interests, many things I believe in. All of those things are important. I can not deny, however, that the thing I find most compelling to ponder and to talk about is dying. Because of my experiences, it saddens me that we live in a culture where death is so hated and feared. It saddens me that we live lives of complete denial and only wrestle with the hate and fear when there is nowhere else to run.

If you had a child who was born with a condition that you knew would take their life, would you talk with them about it as soon as they were old enough to understand? Would you do your best to help them live a happy and fulfilled life in the time they had here on earth? Would you teach them about That Which is Important and place value on different things than the rest of our society? Would you do what you could to help them come to terms with and even accept their own mortality?

If you answered 'yes' to any of these questions, I have news for you.

We all have this condition. It's called the human condition. All of us will cease to exist some day, all of us live lives of uncertainty. All of us have the opportunity to use death's approach as motivation to shift our focus onto That Which is Important, to live fulfilled lives in the time we have here on earth and to come to terms, maybe even accept, maybe even embrace, our own mortality.

But what do we do instead? We buy into the hype. We believe our parents or our friends or our culture when it tells us that death is the worst case scenario. We deny death's presence until it overwhelms us with the pain and confusion of a great loss or our own impending end. We do not take time to make peace with death until we are in a death crisis. A death crisis is not a time to understand what death has to offer and this approach will only reinforce our culture's attitude of death as enemy. We wait to long to process the pain and grace of dying and so we never have a chance to take a more balanced view.

I find this sad. I find it silly. For those with the human condition to pretend that death is not real, to not teach our children about death's touch, to only see its presence as horrific, all of this I see as a counter-productive approach to life. There is an elephant in the room of each of our lives. Shouldn't we see what happens if we stop ignoring it?

So this is what I am beginning to understand. There are people who will read this blog post and find me to be morose, macabre, dark, sick, dramatic, rude, uncouth...I'm sure the list goes on. Those are not the people that are my audience.

What I know now is that, part of my work here, is to talk to The Children of Dying. The Children of Dying are people who, either by circumstance or curiosity, are ready and eager to learn the lessons death has to teach us, to speak of the elephant in the room and to make peace with the grief and the grace of death.

This might not be much to go on, but for now, this is all the rumblings will tell me.

XXOO
Tiffany

Monday, June 30, 2008

Happy Heart

I imagine you are getting sick of my caffeine updates. I'm sorry. I have just become fascinated with how this whole thing is turning out. The secret fears about not ever being happy again without having a coffee in hand, the addict mind pulling me back to the cup with some compelling arguments, the way my body feels better but my mind still struggles and now, the intentional relapse.

This weekend, I wanted to do an experiment to see how I felt having a morning cup of coffee. I had gone 5 days without any and my body was really enjoying it's new state of equilibrium. Mind you, my hubbs grinds the beans himself (sometimes he roasts them himself too) and makes it with some sort of french press thingy. One cup of hubby's coffee is more like two cups of strong restaurant coffee.

So I drank it. And I was a freaking maniac. It was like someone had wound my up like a doll with a key in it's back and I was on fire. Doing doing doing! I got a lot accomplished that day (all of the "magazine covers" below, as a matter of fact). But boy, I felt like a crazy person and I didn't like it. I also crashed and crashed hard.

Sunday I tried a half a cup just for funzies. I didn't like that either. I felt all foggy and weird.

Here's the clincher: I went to work out today and the treadmills have a thing that measure your heart rate. I know this is crazy, but mine usually is 118-124 resting. My docs and I have just come to see that as normal for me.
Guess what it was today? 100! Can you believe it? That's so awesome. Now I feel like I have some tangible results that my body is benefiting from this decision.

So, I'm really liking this no coffee thing. I can't believe I just wrote that sentence.

Sunday, June 29, 2008

Short Explanation for "Silly Magazine Covers"

Hi! In August, I will be doing a one woman show for the CFRI Conference in California. (Thank you to Ana and Isa for making that happen!)

I have been working on it a lot this weekend. I will tell you more about it later but I wanted to share some of the visuals I have created...see the "magazine covers" below!

In short, the theme of the show is about how some CFers might feel bad about themselves when they compare their bodies to those of celebrities and other style icons. In the part with these pics, I am fantasizing about a day when the parts of having CF will be high fashion and revered...

For those who have read my book or this blog, you have probably already guessed that, in this play, I come around to love myself for who I am, discover I am not illness and get in touch with The Permanent Me.

This will be my first "performance," as opposed to a talk, since long before my first transplant. I am mucho excited.

I.V. Diva is the next magazine cover to come...keep an eye out.
Happy New Week!! :)

Silly Magazine Covers




Friday, June 27, 2008

Coffee Update

Well, it's Friday and I have now gone 5 days (counting today) with only a very small amount of tea each morning! I have to say, I am very proud of myself.

It's been interesting to discover just how much my "addiction" is really mental and not physical. In fact, my body already feels better. I guess I'm sleepier but there isn't the high and low that there was with coffee. I pretty much maintain the same level of energy all day. It's been nice to not ride the energy roller coaster. My body feels less tense and it's much easier for me to relax when I start to feel stress. I have begun exercising again and I'm hopeful that that will bring my energy level up. Physically, I can feel that I have made the right choice for my body.

Mentally, however, I am still being taunted with thoughts of iced lattes. I have about 5 normal thoughts followed by one long coffee thought. All the reasons why I "should" just go get a cup of coffee: "I need to do this project, I should have coffee for that"or "Life is too short to not drink coffee" or "Today would be a good day to just have one cup." My brain has not stopped pushing for the caffeine fix!

One other discovery I made this week was that I had an unconscious belief that, without coffee, I would never feel happiness again. On Monday, I felt a wave of happiness followed by a huge sense of relief. I was so relieved to see that I could feel happy without coffee. I had no idea that deep fear of unhappiness was there until I felt the fear lift. It's so amazing all of the unconscious ties we have to things we love. Ties we aren't even aware are there until we try to take that thing away.

This probably sounds really stupid, but this whole experience has given me more respect for the people trying to kick hard drugs. If I have all of these conscious and unconscious beliefs around why I need coffee in my life, how must that be multiplied for someone with a crack or heroine addiction? I can't even imagine.

Monday, June 23, 2008

Finding the Way Back to Me

During our week-long Stay-cation, I had some revelations. That whole coffee thing was just one of them.

Perhaps the biggest one was the realization that I have lost contact with my core... our intercom system is totally down and all I get is static.

Why? Because I haven't been practicing what I preach. I have been bypassing the roses too often in the hot pursuit of my dream. At least, that's what I tell myself, and it's partly true.

My speaking career has sort of taken off like a rocket--beyond my expectations. Like a good American, though, I couldn't be happy totally with that. I have been pushing for more talks, more grants, more publications, more notoriety, more success. I'm a driven person and I see nothing wrong with that. In fact, I wouldn't want it any other way.

At the same time, I would never want to leave behind all that illness has taught me. That Which is Important, The Permanent Me, The Divine Healing of Dying--all the things which I write about in the book or present to people in my talks. Do you know why I started to lose sight of those things? I have let my "speaker's persona" take over. Dostoyevsky writes about this in "Notes from the Underground"--the way humans have a way of assuming the "role" of the activity they are doing. Whether it is the role of waiter, business man or public speaker--we create a persona to match the job.

In the past few months I have felt more confident about myself than I have in a very long time, maybe ever. What I now see is that I feel confident about my persona, not me. Take away my heels and my job title, and I feel little again. I suppose this is the difference between ego and self-esteem. If my self-esteem was high, I would feel good about me no matter what. My ego makes it so I feel good only when I am doing those things I associate with being impressive or powerful. Without those things I am neither.

Here's the good news: I know that I have the capacity to find my self-esteem. I did it when I was dying and had no list of achievements beyond who I was inside. I need to find my way back to that level of self-esteem (self-love)--I need to find the way back to me.

So, how? That's a good question. I don't know for sure. But I'm going to try some things and let you know how it goes.

I feel inclined to state that I think finding this level of self-respect is harder in some ways for me now than it was when I was dying. 1) I have far less free time on my hands than I did when I was sick--this will make meditating, pondering a more challenging prospect. 2) I have both feet back on earth now--less "other side" energy to ground me. 3) I like my speaker persona, I don't want to throw the baby out with the bath water so I will have to find a way for "the real me" and the "speaker me" to co-exist.

So here goes.
Step 1. Become my own best friend.
a. Clean out my mental closet and notice my self-talk. Am I hard on myself, critical? If so, replace that with the kindness I show my friends and family. Treat myself as well as I treat them, essentially.
b. Schedule time for quiet meditation or time to myself doing something fun, like a movie. You can't reconnect with yourself or anyone else if you don't carve out time to spend with them.
c. Write more. I connect with myself through journaling, blogging. Carve time out for this as well.

That's the start. Here I go--finding my way back to me! Wish me luck!

How do you find your way back to you??????

Quick Coffee Update

I have some stuff I feel like writing about today but I wanted to give a quick "coffee withdrawal" update.

I was off the coffee Friday morning until...I was sitting on the couch, surfing the web and waiting for hubby to return from the store. When he comes home he says something (I forget exactly) and behind him walks my best friend from NYC, Elizabeth!!!! He had flown her in as a surprise for our vacation! I was stunned and thrilled and very touched. I cried and stared with my mouth open. It was the coolest surprise ever!!!

So...I fell off the wagon. I wanted some energy and I wanted some lattes with my BFF. I was back on the juice.

She is back in NYC, now, though and it is a new day. No coffee today, just a little tea. I feel more relaxed but sleepy. Not crazy sleepy though. Maybe I can do this thing! I have more hope now than I did last week...I did drive into my favorite coffee shop's parking lot around lunch and drove back out as an act of will power. Maybe I shouldn't be quite so optimistic! :)

Friday, June 20, 2008

From Cheating to Cold Turkey

Yesterday I started the day with a half a cup of coffee. I went to visit my mom two towns over and by the time I got there I had a headache and a cranky disposition. So, yes, I cheated. I drank an entire glass of iced-tea--no refills though. Almost immediately, I got sweaty and my heart started to race. I felt very queasy and had to go lay down. Could I be that sensitive to caffeine already? After only one day of dramatically cutting back? It seems very unlikely yet I can't really think of another reason for my physical symptoms.

So today, so far, cold turkey. It sucks. My head hurts and I'm in a fog. I'm drinking water and about to do some stretches to see if that helps. The question is, will I be able to get off the couch today? :)

Day 3 of coffee detox and still wondering if it's worth the withdrawals...

Truth is, if I don't feel better, and by better I mean human, by Monday (and the day I go back to work)...well. You know what I'm going to do, don't you?

Thursday, June 19, 2008

Coffee Tears and Adict Fears

Part of our day of silence included a good meditation for me. Lots of good things came up, things which I hope to blog about soon.

The first one I wanted to address was my realization of just how much of a caffeine addict I have become. As much as I concentrated on relaxing, controlling my breathing etc...I simply could not get my limbs to let go of their state of tension. I live in this state of tension to varying degrees. It occurred to me, like a bolt of lightening, that this tension was partly psychological and largely physical. You see, I drink coffee like it's going out of style. How can a body ever relax when it is always hopped up on stimulants? It can't.

For the sake of my kidneys, my heart and my overall health, I decided this would be a good time to quit my addiction. I know from experience that on days when I don't drink coffee (usually the days I have migraines) that I sleep, sleep, sleep. Since I'm not at work, I thought this would be a good time to kick the habit and do what I needed to do to get my body back to a new normal. (I have been drinking coffee every day since college and have no idea how to function without it.)

I decided to wean myself slowly and start with only a half a cup. Compared to what I normally drink, that is pretty radical. It is my vacation, though, and I didn't want to spend the day with a caffeine headache.

I felt weird, all spinny and dull, but it was tolerable. Until I went to the post office. The post office had sent back one of my books that I had shipped out to a customer. The label on it said the package was too heavy, over 13 ounces, and needed to be sent directly from a Post Office. This made no sense, my book is 12 ounces and I ship them out all the time. I thought it was a mistake and would get it sorted out and send out another book. The exchange with the post office guy went someting like this:

Me: "Hi, I got this package back. I send them out all the time so I don't understand why. It's 12 ounces right?"

(He weighs the package) "Yes, but you have the wrong postage on it. It's 10 cents more."

Me, confused: "Oh, ok. I guess I forgot to put a second 10 cent stamp on it." Pause "I could have sworn that was the right postage."

Him, sarcastically: "It was, last month. The postage went up in MAY!"

This is when the woman working next to him breaks out into "what an idiot" laughter and just keeps laughing. Apparently, the fact that I didn't know this is so ridiculous and funny, she can't control herself.

From that point on, I assumed the posture of my 6-year old self being tormented on the playground. I barely spoke a word as he told me over and over "It changed over a month ago. Yep, it went up 10 cents in May, that's over a month ago..." and on and on. I rushed to my car after paying him 20 cents and was able to hold back the tears until I got in the driver's seat.

I cried all the way home. I mean cried. Ugly cry. Not just a tear or two.

This may sound strange, but I knew it was the lack of coffee pulsing through my veins that made me so vulnerable. There is a wall of confidence and energy that coffee gives me. Had I had my normal dose of caffiene that day, my reaction to the post office people would have been either a passing annoyance or great amusement at thier superior attitudes about a 10 cent stamp. Without my coffee wall, I felt raw, vulnerable and stupid. I had trouble recalling my worth and was a 34 year old version of my child-self. The only thing that kept my head above the despair in my chest was knowing that I felt this way because of was withdrawing my crutch.

Since then, I have been listening to my thoughts and observing them. I have watched enough "Celebrity Rehab" and "Intervention" to know that a person trying to kick an addiction often thinks thoughts that are not really their own, they are the thoughts of the addiction.

Things like:
"Is it worth losing your quality of life for this? Let's say drinking caffiene does have a negative effect on your body--is it worht this? Wouldn't you rather die earlier than live like a zombie?"
"All of the women on your mother's side are lethargic. You get it from them. Of course you are adicted to a stimulant! You need caffiene just to function like a normal person."
"You will never be able to do a good talk again without coffee to pump you up."
"You will never feel passionately about anything again. Without coffee, you are bound to a life of mediocrity."
"Everyone has a vice. This is yours. What's the big deal?"

Pretty bpowerful stuff, huh?

I will admit, the adict thoughts make sense to me. Why bother with this? I'm not going to pretend I'm committed to this. I don't really know how important this is to me. I'm still working it out. Today, I had a half a cup. We'll see what tomorrow brings.

I'll let you know how it goes...I just hope the days of coffee tears is over--that was annoying!

Tuesday, June 17, 2008

Not Quite Monk-Like, but Interesting Nonetheless...

This week hubby and I are on vacation! Yay! More accurate, we are on STAYcation. Between our thin wallets and our very, very old dog, going out of town just didn't look possible. We decided instead to stay home and indulge ourselves in eating out, movies etc and, of course, not working.

As we were talking, it became clear that a big goal for both of us was to "detox" a bit--me from Jibber Jabber and hubbs from constantly surfing the web.

I have found, as an introvert, that a "successful" public speaking career will require conscious balance. After a week or two of public talks, I get so sick of hearing my own voice! So, as a way of detoxing, from many of life's common practices, hubbs and I decided to go silent. We made a few rules about when we could talk, how we could communicate etc. and began living without words. We weren't going for monk-dom. We could read modern novels and watch movies. We could do some charades and a few written messages were ok. For the most part, though, silence. Here's how it went:

My first reaction was mild panic. I didn't know how this would go, what it would look like. I didn't know how to function without language. It was surprising, however, how fast my mind adjusted and within hours watching people in movies talking seemed strange.

My thoughts were so LOUD at first. Jibber jabber, jibber jabber, bla bla bla! Stupid stuff, commenting on everything! But, there was no one to share my inner narration with and so there was really only one choice, let it go.

When things happened, like the strainer came out of the dishwasher all rusty, there was no discussion. No discussion meant no big deal. If you can't hash something out, all you can do is accept and move on...no blame, no remorse, no hang up.

I could not say "thank you" and I realized that was both good and bad. Bad because I could not express gratitude easily. Good because I noticed a feeling that can come with "thank you" is one of "superior" and "submissive." There was none of either in the silent world--only doing what needed to be done as it needed to be done.

No adjectives meant I either needed to physically share my experience, like yummy food, so that we could each have the same experience of "good" or "yummy." When faced with the choice of sharing tasty food, I kept my adjectives to myself and ate the food without conveying how it tasted to hubbs. Selfish? I wouldn't have given him any if I could talk, so why should I just because I'm silent! :)

I was surprised to see that the dogs didn't notice at all. All the yammering I do to my dog all day and she did not notice that it had stopped. In fact, I felt much more in tune with our dogs as we communicated in silence. I felt that my Whippet actually became more expressive but perhaps I was just paying closer attention. I felt more like them than I ever had--I understood them better as silent companions.

I learned that most of the things about which I would normally engage in a discussion, I actually didn't care that much. My hubb wanted to make the room cooler and indicated so as he turned the AC dial. Normally, I would have something to say--a need to discuss. With no words, I realized I just didn't have a strong opinion either way. It made me see that often, words= ego. I may not care abut something but if given the option to ruminate, to discuss, ego will not pass that up!

When we started cooking dinner, I felt more like primitive man. Communication around tasks like cooking is so helpful! Communicating around abstract tasks is equally difficult and important. Things like, "I'm going to the Grocery Store. Do you want anything?" was impossible to communicate without words. It gave me a strange understanding/appreciation of the origin of language.

I noticed the capacity for language to help us QUALIFY EVERYTHING! As children we are asked by everyone around us "Do you like this? How do you like that?" and we are programed that way to attach descriptions and opinions to every little thing. I learned that not everything requires a qualification! Somethings just ARE. Words, modern language, asks us to analyze and find a conclusion for every experience, belief, taste etc. Perhaps that is just overdoing it! Perhaps not every nuance of life requires my (internal or external) description and conclusion.

Without words, you have to either BE your expression or DO your expression. Gratitude is a kiss, not a word. Wanting to be close to someone becomes a physical closeness, not pretty language from across the room or via email. When I wanted hubby to know I missed him, I waited on the front porch for him to come back from walking the dog. At some point, I got hot and bored and I would have liked to go inside. But if he came back home and I was not on the porch, how would he know I missed him? Words are gone and we become our action. Not a bad way to live, with or without the silence!

My mind got quieter and quieter as the silence went on. Things like colors and the blooms on trees caught my eye. I wasn't too busy running my mouth anymore to notice these things and I like it this way. I was able to get very clear in myself about a few things, personal and professional, that I have not been able to get my mind around. After 24 hours of silence, it seemed so obvious.

I like words. I like talking. I like sharing abstract thought. I also like what I found in the quiet. I will now seek to find a balance between the jibber-jabber of modern life and the sweet silence of this staycation.

Tonight, we are going out to dinner and have ourselves a nice talk...with as many comfortable silences as possible.

Monday, May 19, 2008

Introduction: Stuck or Un-Stuck?

Have you ever been stuck? Better yet, have you ever loved someone who was stuck? (It's much easier to see when other people do it!)

You know what that means, don't you? When life isn't going just right and you start spinning your wheels. When you just can't seem to find a detour around the obstacle. When life's fast-balls hit you in the face and you just can't seem to get back up again. When the supportive people around you start to take a few steps back, become inpatient and start saying things like, "Isn't it time to move on?"

When being stuck relates to the world of illness, you might find a label attached to your lack of mobility: "victim."

In 2007, my first book, "Sick Girl Speaks!" was released. Since then, I have had the pleasure of spending my time giving talks and workshops to patients and families about navigating the medical system. As a person with cystic fibrosis and having received two double lung transplants in my first 30 years of life, I had a lot to say about life in the medical maze. "Sick Girl Speaks!" is a series of complaints and love letters about the ups and downs of life "on the inside"--a battle memoir filled with tips on being an effective patient advocate. It was a book born out of years of difficulty and the joy of survival.

I'll admit, I wasn't terribly interested in the professional perspective when I wrote "Sick Girl Speaks!" What happens on the other side of the curtain has always seemed mysterious and beyond my grasp. Since then, however, I have been able to get a glimpse into the medical professional's perspective and I find it both humbling and fascinating. It's almost as if we are two different species--professionals and patients--and we find each other equally elusive and difficult to understand. I could never have predicted the enthusiasm and hunger I have found when I speak to students and health care providers about life in The Sick World. They really want to know what makes us tick (patients, that is) and I have discovered great value in learning more about the landscape of the world in which they reside.

What does that have to do with this book? Well, it is through my conversations with doctors, nurses, chaplains and social workers that I have come to discover a question worthy of us all pondering. I am often asked by those in healthcare how it is that I was able to avoid becoming a "victim." They see it over and over in their practice--the patient who faces illness with grace and purpose contrasted with the patient who never seems to find peace and lives life with resentment and anger. How does this happen? Why does this happen? How can one patient find joy despite suffering and another never recover from the trauma of a scary diagnosis?

I would be deceptive if I didn't mention that these questions often come wrapped in a fair amount of judgment and disapproval. After all, if Bobby can be positive, the fact that Jonny is negative means he has made a choice to remain a victim of circumstance, right? And dealing with Jonny and his "bad attitude" is much more difficult for everyone involved. Naturally, this could lead to resentment on the part of Jonny's loved ones and caregivers.

So, it appears this is a question that would be worth spending time thinking about. For Jonny himself, Jonny's family and for Jonny's healthcare providers. We all need to know, why is Jonny stuck and how can we help him get un-stuck?

I propose that we all have internal monologues that play in the theater of our mind. A movie reel containing a story that we might not even know is back there. It isn't until we understand what story it is that we keep telling ourselves that we can then begin to change the film and tell another tale.

What is Jonny's story? This is what I want to know. What is my story? Your story? Was does it mean to be a victim and how does that differ from "normal grief"? The illness story always begins with grieving so why do some most past the pain and others stay locked inside it? How do the stories of the people around us influence our internal monologue? What can medical professionals do to help us tweak our story, if anything? Does having a "bad attitude" have any impact on our physical outcomes? Can language help shape our story to one of empowerment?

These and many more questions flood my mind as I prepare to embark on this journey. And, unlike the creation of "Sick Girl Speaks!", I will not be on this journey alone. I will be using stories outside of my own to help me decipher these intricate questions.

This is not a book intended to place blame or create labels. On the contrary, this is a book intended to remove the fog from the mystery of living with illness. We can not be compassionate until we understand. It is not until we understand that we can make a different choice. Often, we can not make a different choice without believing there is another one to make.

There is a universal goal among patients, loved ones and professionals. We all want to live the best life we can, don't we? Likewise, we want to walk through this life with people who are also living the best life they can, right? In exploring these questions, perhaps we can get one step closer to living well with illness. Let there be healing through exploring illness and the stories we tell ourselves!

Thursday, May 15, 2008

Uh-Oh. Pregnant Again!


Hi All!

Well, it's pretty obvious to me that I am not good at this whole "blogging my life" thing. So much has happened but I just never seem to have the motivation to sit down for a blog recap. This is precisely why I didn't write a memoir! I just don't like to recount my life...it doesn't appeal to me much. (I like reading memoirs, just not writing one.)

So a few little announcements before I tell you about my pregnancy! I was on NPR last weekend, "The People's Pharmacy," and it was lovely. I was very nervous and you can tell in the first few minutes but I eventually hit my stride and go. I have had a great response and am forever grateful to Joe and Terry Graedon for giving me the opportunity to be on national radio!! Now, I'm inspired to make up a cool media packet and shop it around--getting press really helps sell books! Who knew? :)

I will be posting an excerpt from my interview on my website so keep an eye (ear) out for that.

Also, in Sick Girl Speaks Inc. news, I am proud to say I am now officially a member of the Duke Healthcare Patient Advocacy Council! How great that Duke even has a council like that and how great it is that I get to sit on it!!! I feel so fortunate. Life is good.

Ok, speaking of life being good--let's get back to me being pregnant. Well, as you all know, I gave birth in October 2007 to a bouncing baby book by the name of "Sick Girl Speaks!" Like so many Moms, I have been fretting about making sure my child gets the attention it deserves and the love it needs to grow. I am still tired from giving birth and raising my little baby who is growing into a fine little toddler. Being a Mom is exhausting!

But, like so many Moms, I just discovered this morning that I'm pregnant again--and so soon after the birth of my last child! Oops! Oh well, hopefully there's enough of me to go around!! :)

I have a new book in my mind, my guts and my soul. It has been slowly emerging through all that I have been doing and learning these last few months but it just became fertilized after a conversation I had yesterday. (So, I suppose if I don't want to get pregnant again after this, I should abstain from conversations as that seems to be one of the major ways I get pregnant with book children!)

So "Sick Girl Speaks" is about the medical system primarily and navigating the medical and emotional mazes. This new baby is about the individual and family systems. It's already got a name: "Victimized: Illness and the Stories We Tell Ourselves."

This theme of Empowerment vs. Victimization or Healing vs Curing--these are big themes that keep popping up over and over. The stories we tell ourselves and the stories that we are told from others have a major impact on how we will cope with diagnosis, chronic illness, serious illness, death and grief. I will tell my story but I will also be telling a lot of other people's stories.

I see the format being very similar to that of "Sick Girl Speaks!" You know what that means, don't you? Yep. I'm back bloggers!!! I'm blogging a book again!!!! Yea! I am so excited!

I can't wait to get started. I'll also be looking for stories from you guys. Up for it?
My self-determined deadline is October 15, 2008. I'll give birth right around the same time as last year!!

Victimized: Illness and the Stories We Tell Ourselves....
Like it????

Tuesday, May 6, 2008

But, Don't You Know Who I Am?

Wow. What a crazy month! April flew by with barely time for a blogging "hello"! I have been to NYC, Wisconsin and all over North Carolina this month. I have been so happy to have great opportunities to speak at really exciting venues, begin my "Finding Your Voice" series for patients and families and I'm thrilled to say I was able to get certified in the "Respecting Choices" Advance Care Planning Facilitation and Instructor technique. I keep booking "gigs" and the book continues to gain momentum. Now, the key is finding balance! Isn't it always, though?

In between all of these things, I have attended quite a few CF fundraisers and similar events. One of those was this past Saturday night. Parents of a CF girl (Dad was quite the rock star in the 80's and 90's) threw an amazing concert a local hot spot with all of the money going to the Cystic Fibrosis Foundation. It was awesome--my kind of fundraiser!! Congratulations Amy and John for putting together such an amazing two nights of fun and raising tons of money for CF research!!

My story is more about the opening band, however. I had never heard them before but my friend who came with me had. They were almost done playing when she casually mentioned the lead singer's name.
"Did you say Chris Stevens?" I asked with my mouth agape.
"Yea" she said excited at the connection, "You knew his band the Delboys?"
"No!" I proclaimed beaming, "I know his dog Coco from the vet hospital where I used to work! Coco was my favorite!!"

So what, you ask? It was just one of those moments when I really understood the limits of our perceptions. I saw this man dozens of times and knew him as a middle-aged guy with a wife, kids and the cutest Powder Puff Chinese Crested I had ever seen. There was nothing there to ever give me the hint that he was a musician and a rock star of sorts.
I wondered if it was frustrating for him to go about his day and know that people had no idea about his hidden "coolness." Who knew he was hip?
I could almost feel my brain twist when I was trying to align my previous perceptions with the man I was watching rock it out on stage. We make so many assumptions--how often they are wrong!

I suffer from Misunderstood-itis. I really don't like it when people make quick assumptions about me based on how I look, my educational background or where I live. 99% of the time, I feel like their perceptions are wrong and yet, how often do I stop to check my own? Rarely.

From now on, instead of assuming that what stands before me represents a person in entirety, I will assume the opposite. After all, the guy with the with the dreadlocks could be an accountant. The guy with the mini-van could be a rock star. The girl with the 2.5 kids could be a CEO of a Fortune 500. The girl with the fancy business suit driving a Lexus might live at home with Mom and have a drinking problem!! The person who stands before me is only a sliver of who they are.

I, for one, would love it if people would assume that I am much more than they can see. I will now try to extend the same courtesy to those I meet.