The Cave of Denial: A Place to Hide

Have you ever known someone with a chronic but manageable illness who did not do what was necessary to stay healthy? Maybe they didn't lose the weight the doctors told them to and now they need surgery for knee problems. Maybe they didn't change their diet as they should have so their heart disease has progressed. Maybe they didn't take their meds, do their treatments or follow the recommended physical therapy. I think it's safe to say we've all known someone, who at some time, has not followed through with a medical regimen and paid the price in some way.

How did you feel about it? Were you angry? Annoyed? Dismissive? Sad? I know, for me, when I see someone with a manageable illness and they are choosing not to control it, I get irritated. Sitting high atop my horse I look down my nose and say "Poor me. I have an illness that is mostly out of my control. What I would give to have an illness like YOURS--one which if I chose to be diligent I could be healthy for the rest of my life." It seems like such an easy choice, doesn't it? If I follow this set of guidelines I can be healthy and if I don't, I will be sick. How could someone choose not to lose weight, change their diet, take their meds, doe the treatments or stick with the physical therapy? And when they don't do what they could to stay healthy, do they deserve our sympathy when their health declines?

Yes, at my worst, I have saddled up my high horse and deemed people silly for their laziness or lack of foresight. At my best, seeing someone who has a controllable illness neglect themselves has filled me with frustration and sadness. This week, I discovered I was that "someone."

I was diagnosed with diabetes in 2000, shortly after my second transplant. I was absolutely devastated. I saw diabetes as a miserable life sentence of restrictions and complications. At the time, my devastation was accompanied by extreme fatigue, stomach pain and nausea. I was planning on returning to college and, after the diagnosis, I felt so flattened I called and canceled my enrollment. Diabetes was messing with my life and was not welcome in my illness repertoire.

It wasn't long after that I had a real change of heart. I discovered that I had some pancreatic function left and didn't need insulin right away. Because my diabetes was caused by the prednisone after transplant, it was considered a combination between type 1 and type 2. Maybe this wasn't so bad after all. With some oral meds, I had about a year of eating and behaving normally with little diabetic interference.

Even after the oral meds lost effectiveness and I was put on insulin, things still didn't seem so bad. My doctor was aware of my need to gain/retain weight and his philosophy was that I should eat anything I wanted but "cover myself" with appropriate amounts of insulin. I followed his orders initially but often found myself with low blood sugar--a horrible feeling I wouldn't wish on anyone. For anyone who hasn't experienced it imagine sweating profusely, your heart racing, your body convulsing and your brain slowing to the point it is unable to help you with any concrete suggestions like "get some juice." I have spent minutes in the kitchen staring at the refrigerator unable to gather enough menatl capacity to remember what I was supposed to do next. At some point, I began to have anxiety about taking insulin because I didn't want to have another horrible low blood sugar experience.

I began to notice that my blood sugars seemed to balance themselves out eventually, leading me to self diagnose myself as still having pancreatic function. I began to use insulin less and less. I think, for about a year or more, I actually put it out of my mind that I was a diabetic. I rarely checked my blood sugar and, when I did, if it happened to be high I always had an excuse. I would convince myself about why it was high at that moment but that "really wasn't normal." I went right on neglecting myself.

A few weeks ago, I sat in front of my doctor and told her all of these things; I had pancreatic function, my diabetes didn't need insulin, nor did it need managing. I was there for fatigue but I just knew diabetes couldn't be the cause. I even gave her blood sugar levels from years ago as my "average morning numbers."

It's embarrassing to write all of this now. When I got home from that appointment, I decided to just try "an experiement" and check my blood sugars more often. They were all over the map and very high. Consistently. It "really was normal." I began taking insulin as I had been prescribed so many years ago. Like a magic trick, I had energy again. My stomach began working better and even my mind was more clear. I was a diabetic and I needed to manage it. I had come to the end of my excuses and stories.

If you find yourself on your high horse looking down at me now, shaking your head, I don't blame you. I, of all people, shouldn't be guilty of such neglect. I, "sick girl speaks," who preaches about be proactive, getting real and facing your truth. I, who have had two double lung transplants and values the time I have been given. How could I be so dumb? So naive? So delusional? So irresponsible?

Like many people, I think I found a few hiding places to keep me camouflaged until I was ready to face the enemy. So what are some of the factors that led me, and perhaps lead other people, into the cave of denial?

Overwhelm
After my first transplant, I was dealing with a new and complicated medical regimen. I was in a deep depression caused by the prednisone taper. I was attempting to force myself into picking a career path to determine the course of my life. I had just gotten the greatest gift a person could ever be given and hadn't even begun to process all of what happened.

When diabetes came along, I thought I might crash down like a house of cards. I simply didn't feel like I could handle one more thing. When I started getting some messages that it might not be so bad, I clung to the idea that maybe this was something that didn't need much attention after all. I delighted in every clue that might support this theory and gathered them like a bouquet of roses. Even after the overwhelm of my life diminished, I was so convinced that this bouquet was real, I never even questioned it. I just kept living as a person with a mostly functioning pancreas.

Annoyance
Diabetes is nothing if not annoying. It is constant. Aside form the obvious, checking blood sugars 5-6 times a day and giving insulin, there is the side effects that come when the blood sugars go too high or too low. Neither feels good. Every time you eat you must count the carbs in the meal and adjust the insulin based on that number--this I find intensely tedious. A good diabetic usually feels like they spend most of their day calculating, checking, giving insulin and adjusting when the dose is not right. It's annoying. Do I sound like a whiner? Maybe. Because, again, diabetes is something that can be managed if you stay on top of it. But here's the simple, bottom line. The annoyance of diabetes drove me into the Cave of Denial because I Just Didn't Want It.

Lack of Immediate Impact
We all know that diabetes can have devastating results when it's not managed. Amputation and death are understood to be a likely outcome for an unmanaged diabetic. While I understood that intellectually, for the first 8 years I was a diabetic, I didn't feel the effects very often. If I did, I was unaware that what I was expereincing was from diabetes. Conversely, I did feel profound effects from the insulin--sometimes it made me nausuaus and, when I gave too much, made my blood sugar plumit. On some level, I began to associate managing diabetes with feeling bad and not managing it with feeling good. This made my journey into the Cave of Denial even easier.

It wasn't until I discovered that diabetes was negatively impacting something I loved that I became serious about treating it. That something I loved was my life and my career. I was feeling so tired all of the time that I was no longer feeling enthusiasm for holidays with loved ones, giving my beloved lectures or watching my favorite TV shows. My emotional self was flatlining and it was freaking me out. When I realized diabetes was the culprit, the impact it had on my life became real. It wasn't until diabtes went from abstract to concrete that I wanted to crawl out of the Cave of Denial and get real about being diabetic.

There are people who will follow medical directions to the letter without ever missing one moment of dedication. There are people like me who will be dedicated about some things (like transplant meds) but neglectful about other things. I have had some parents of chronically ill children ask me how I recommend they make their child be compliant. Sadly, I think in some cases it takes experiencing the negative effects of an illness to become motivated to do better in the future. For some of us, the first step is finding something meaningful to live for and using that as a driving force to stay healthy. We are creatures who move towards pleasure and away from pain. Sadly, sometimes the Cave of Denial feels like a pleasurable place to hide; far less painful than the work, annoyance and discomfort of compliance.

I don't mean to suggest that we should all neglect our healthcare treatments until we get into enough trouble to be motivated to compliance. In some cases, that level of neglect could cause so much damage that a change of heart would not be enough to return the person to health.

Ideally, we would all do what is best for us all of the time. I only wish this was the way it worked for everyone! I simply write this as a guilty party, someone who has spent years in the Cave of Denial, so that we all might have more compassion for each other's struggles. I know it is frustrating to watch someone who could be healthier not take full advantage of what is available to them. Perhaps, with a different understanding, healthcare professionals and loved ones will be able to discover new ways to draw patients out of the Cave of Denial. And sometimes, as much as we wish it weren't true, some of us have to learn the hard way how much we want to live.

So behind...

I have a book of blog ideas and since I have recently re-committed to blogging, I get so frustrated when things are too busy for me to write. Paradoxically, I am doing very well with my efforts to balance my life (actually plan on blogging about that) and sometimes, in this effort for balance, blogging has to be pushed to another day.

Tomorrow is Sunday and I hope to have plenty of time to write a blog or two...until then, just a thought that passed through my mind...

When us recipients refer to our donor organs it's not uncommon for us to say "my new lungs" or my "my new heart." Perhaps I'm over thinking things, but I'm wondering if that could in any way be offensive to a donor family.

The organ is certainly not "new" and by saying so it makes it sound like we got in at Nordstom's or something. That language could be seen as a little objectifying or creating a distance between the truth of the circumstances that resulted in our being transplanted.

My friend Isa often refers to to her lungs in relations to her donor. "Xavier's lungs", or something like that. I love that. They're not new, they belong to the original owner, and we are so lucky to be holding them now in their stead. Sadly, I don't know anything about my donors and so can't refer to the lungs in the same way.

I recognize the "organs are new to you" perspective but still wonder if I shouldn't be a little more mindful in how I refer to them in the future. It just feels as though the highest reverence should be used as a sign of respect for the awesome gift given....

Then again, maybe I am just overthinking it all?

See you tomorrow and good night.

Sticklers

Do you remember when you were a teenager and learning to drive? Did you grip the wheel with sweaty palms? Did you look 15 times before proceeding through a four way stop sign? Did your instructor chastise you if you crossed the double yellow line, went even slightly over the speed limit or moved your hands from the "10:00 and 2:00" position? There were so many rules, protocols, to follow. It all seemed so strict and unyielding. We were taught that to ignore one of these many protocols would surely result in a horrible car accident.

So now how do you drive? Do you still keep your hands at ten and two or do you drink your morning coffee with one hand and hold the steering wheel safely with the other? Have you ever crossed the yellow line to avoid and obstacle or because the road was completely deserted and it just didn't matter? Have you ever gotten lost and went the wrong way on a one way street, just for a second, to avoid an unwanted highway or traffic jam? Do you still concentrate on driving like you used to or is it now second nature?

Whenever we are practicing something new and important, we must pay attention to the rules, abide by the protocols and allow the techniques we are learning to become ingrained within us. Once we have enough practice, once we can trust ourselves and our experience, some of the vigilance will relax and will we be able to move outside of the rules safely. This is true of driving and this is true of navigating the healthcare maze.

The Vigilant Stickler

After transplant, patients are given literally lists of things they should not do. That can range from eating salad to not missing a dose of immuno-suppresant medication. The farther out a person is from their transplant some of those rules no longer apply and there are some rules that never waver. Each center has their own set of rules and each patient evolves in their belief of which protocols can be relaxed and which ones must remain steadfast. It is personal discretion in many cases and there are some professionals who understand this and others who won't tolerate it. Those who are unable to see the fluidity of certain protocols, I call "sticklers."

Our lung transplant clinic is held on Friday mornings. I was considering the pros and cons of the Nissen Fundoplication and my physician and nurse practitioner invited me to meet with them on a non-clinic day to discuss the surgery. When I went to clinic, there were no patients there. The only people in the area were administrative staff and my nurse. I checked in at the front desk and the head receptionist handed me a mask. Wearing a mask in clinic is normal protocol but we are free to take them off when we are alone in our exam room, for example. The method behind the mask is primarily to prevent immune-suppressed patients from transmitting any bacteria or viruses to eachother while waiting to be seen.

I took the mask from her with no intention of wearing it. I was alone in the waiting area! At one point, before my nurse had come to talk with me, the head receptionist came over and snapped at me, telling me to put the mask on right now or leave. I felt the anger boiling inside but had no real desire to fight this woman. I recognized her immediately--she was a stickler.

I put my mask on, deciding this was not a battle worth fighting. Soon after my nurse practitioner walked in, sat next to me, and we began a lively discussion. Partly because I felt protected by her presence and partly because it's difficult to be heard under the mask, I pulled the mask down for our conversation. Outraged, the stickler came running over to us and yelled, I mean yelled, at my nurse.

"Vicky, if she does not put that mask on right now she has to leave!!"

Vicky looked shocked and replied, "But we're alone. There are no patients here."

"I don't care, Vicky. Those are the rules. She has to wear her mask in the waiting room!"

"Um. Ok." Vicky was stunned.

What we were witnessing was the most vigilant species of Sticklers, the kind that obey and enforce the rules even when the experts tell them it's not necessary. This receptionist was so entrenched in her firey dedication to protocol that she had no hesitation chewing out her superior in an effort defend the rules and get her way.

I put my mask on and Vicky and I exchanged bewildered glances. Vicky mumbled "That was so unprofessional. She just doesn't get it." So true. She didn't get it. She was so busy being a stickler that she had not taken the time to understand why the rules were in place nor had she given any thought to when it may be appropriate to relax those rules.

I suppose intellectually that I understand her position. She had been told to enforce certain healthcare etiquette and she didn't need to know anything else. However, her demeanor and her lack of common sense made me feel both humiliated and furious. Haven't I been vulnerable enough throughout this process without the receptionist yelling at me like a small child? How dare this person assume that she understand the finer points of post-transplant life, and ignore both my experiences and the expertise of my nurse? When it was time for the meeting, I was still shaking from the experience. Happily, I never saw this particular stickler again.

Baby Sticklers

When I am being treated by interns, residents and sometimes even fellows, I affectionately (and privately) refer to them as Baby Docs. It may sound like a condescending term but I (usually) mean it purely as a term of endearment. I feel affection for Baby Docs because:
1. Many of them are close to me in age
2. Their demeanor can range from anxious to scared out of their minds
3. The newness of all they are learning and practicing is usually overwhelming
4. They work harder and more hours than any human should

In general Baby Docs seem to fear, above all else, "missing something." This of course makes perfect sense. Without experience as your guide, it is your responsibility to leave no stone left unturned. Some young healthcare professionals appear to have so much medical information crammed in their brains that they disregard the patient's input and focus only on the long list of possible (and obscure) illnesses the symptoms match. For those who cling to every detail, order every test and make mountains out of mole hills, I lovingly crown them Baby Sticklers.

Baby Sticklers, unlike Vigilant Sticklers, have the potential to be very helpful. One example of this happened to me a few years after my second transplant. I went to the emergency room because I had a very high fever and aching in the joints. Normally, I am familiar with my body's aches, upsets and fevers. This day, however, I was at a loss because I had never felt quite like this before.

At the ER, I was seen by the intern and the resident. They asked me the usual 10,000 questions and threw in a few more due to my unusual symptoms. CF related arthritus, a virus and rejection were all brought up as concerns. Eventually, my transplant doctor arrived and, while puzzled, decided to treat it with IV antibiotics, just as we would have a normal CF exaserbation. I was to be moved to the Pulmonary floor, get a PIC line and remain inpatient for a few days. It was all quite routine.

Shortly before I was to move upstaires (which in hospital time is a few hours) one of the Baby Docs came in with his eyes shining. He sat down next to me and said "You said you walk dogs for a living."

"Yes."

"Have you had any tick bites lately?"

"Actually, yes. I pulled a tick off about a week or so ago."

With that this Baby Doc stood up and, like a sceen from "House," he whispered "yes" while making the fist-elbow-to-side victory gesture. Because of the extensive history he had taken, his fresh ears and his tendancy to be a Baby Stickler, he had found the diagnosis--Rocky Mountain Spotted Fever. I went on oral antibiotics and recovered within a week.

While Baby Sticklers can be very helpful, they also have the potential to drag things out longer than needed and may have trouble letting things go. This next story is an embarassing one to tell, but it's the best example I have of the Overly Cautious Baby Stickler.

One day during the time before my second transplant when I was very sick and had only about 10% of my lung function, I was feeling uncomfortable. I felt as though I was more short of breath than usual so I turned up my oxygen. Later, I felt even more short of breath and turned it up again. This pattern continued through the morning. By the afternoon, I was practically gasping for air. I called my parents and they rushed over to be with me. I tried relaxing, changing positions and turning the oxygen up some more. I had gone from 2 liters of O2 to about 10--that's a huge jump. By mid-afternoon, we decided to take me to the ER. I couldn't walk on my own at this point.

When we got to the ER, there was a long wait and I sat in the wheelchair thinking "This is it. Today is the day I leave this earth." I was a jumble of emotions but mostly worried about my parents. When they took me to the back, I was met by a young resident, new to the transplant team. In retrospect, she knew what was happening and was very kind in the way she handled it. She simply said "Tiffany I want to try and turn the oxygen down a litttle bit and just see how you do, ok?" This made me very anxious but I agreed. Within minutes, I was no longer gasping for air and my breathing was as normal as it had been before the morning's events. Little did I know that turning the O2 up too high would cause severe shortness of breath!

As silly as I felt, I was also joyful and relieved. Today would not "be the day" and I was feeling so much better! I laughed and joked and prepared myself to be discharged. But nobody was coming in to have me sign the bye-bye papers so I could go home. The nurses kept saying that before I went home the doctor wanted to see me again. Eventually the resident who had so kindly turned down my oxygen returned. This time, she wanted to run a battery of tests, some of them pretty major. She explained that, while the episode was most likely a result of my oxygen being too high, she was uncomfortable sending me home without making very sure something else wasn't going on. She had gone down the list of possible problems in her head and landed on pulmonary embolism. Before I went home, she wanted to rule this out.

While I was certainly the dumb one who cranked up the O2 causing respitory distress, it seemed obvious to me that that was all that was going on. I told her I didn't want any more tests and I was comfortable with leaving well enough alone. She explained to me all of the reasons it could be something more serious and why she wouldn't be following proper protocol to let me go home. I was now beginning to see she was an Overly Cautious Baby Stickler. Common sense told me these tests weren't necessary so I asked if there was something I could sign to let her off the hook if I went home and dropped dead of a pulmonary embolism. In the world of Sticklers, this is how you fight fire with fire--follow protocols to relive them of their protocols. This Overly Cautious Baby Stickler felt fine letting me sign the paper and walking out the door--no stone had gone unturned and no rules had been bent. We were both happy.

What I Know Now

Even the most difficult of circumstances get easier with experience. Please note, I said easier, not easy. Living with illness may or may not bring truly easy days but there will at least be an ease with which you surf the breaking waves. When I talk to folks who are pre-transplant, it's not uncommon for them to be absolutely overwhelmed by all of the transplant medications. They say "How will we ever remember all of those meds and when to take them?" Like with most things, with time it becomes second nature and there is no anxiety or trouble remembering.

Having Vigilant or Overly Cautious Sticklers in your medical business can make these transitions a little more difficult and confusing at times. Just imagine if you had to ride in the car with your high school driver's ed teacher for the rest of your life! There would have to be some amount of negotiation about which rules you felt should be stuck by and which ones needed some slack. Just like with driving, when it comes to dealing with healthcare protocols, you must do your homework and understand why the rules were made, practice those rules until they become second nature and eventually loosen the rules in appropraite, wise and safe ways.

Sticklers are Sticklers for different reasons. Perhaps they have not spent much time in the Sick World and it makes them fearful or uneasy. Perhaps they have a personality that thrives on rules and protocols and see no reson to every stray from what they have been taught. Perhaps they are simply doing their job and have no control over relaxing or adjusting set rules--they would get in trouble if they didn't stick to being a Stickler.

So, whatever the reason, what is a patient to do when facing a Vigilant Stickler or a Baby Stickler who is being a little too careful? Fight when you have to, grin and bear it when you can and sign a release to get them off the hook when possible. Sticklers aren't bad people and they're not doing anything wrong. That doesn't mean, however, that we shouldn't continue to assert our rights to make our own healthcare decisions, preserve our own sanity and reserve the right to use common sense in the face of science!

You must understand the rules before you can break them. The most important lesson I've learned about going against a Vigilant or Overly Cautious Stickler? I better be sure I know what I'm doing because, if not, there's surely an "I told ya so" waiting if I'm wrong!!

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I'm Fine, How Dare You Say I'm Fine

There is a conflicting need within many patients to both be seen as a strong individual, separate from illness, and to also be acknowledged for the suffering they endure.

When I was waiting for my first transplant, I was dating a guy who wasn't always very sensitive to my illness. More than anyone, he brought this dichotomy out of me.

Guy: "I don't know if I can really be with a sick person."

Me: "Guy, I can't believe you see me that way! Sure, I may have some health issues but I don't let them get me down! I still do most of the things normal people do. I may have CF but CF is not my identity! I am not a 'sick person', I am Tiffany!"

Guy: "Yea, I guess you're right. I was talking to my friend about you today and he was asking me why you didn't work..."

Me: "Did you tell him it's because I was waiting for a LUNG TRANSPLANT?"

Guy: "No. I thought you weren't that sick. I mean you could work if you wanted to."

Me: "Guy, I can't believe you would say that! Do you not see how difficult simple things are for me? I have treatments and therapy to do and just doing ordinary errands tires me out so much I have to nap for hours. I have CF, asthma, and anemia! I'm waiting for a lung transplant! I can't believe you think I could work!"

(This conversation has been a condensed dramatization although, not far from the truth.)

I see this particular dynamic often on the online support groups for CF. In one moment a person with CF may be asserting that they are still able to work and be independent because they are exceptionally dedicated to caring for their health. They may even go so far as to criticize another patient for needing financial support, implying that if they took better care of themselves or resisted the urge to be a lazy patient, they too could live without being dependent on others.

As you might imagine, this particular perspective ruffles some feathers. An inevitable response from those who do need to rely on others is that they "have a more severe gene mutation" or they are simply "sicker than those who can continue working etc." This usually results in an explosion from those who originally implied that other patients did not care for themselves sufficiently or chose to rest on their genetic laurels.

Amazingly, the people who began by shouting from the rooftops about how healthy and self-sufficient they are quickly turn the tide with a litany of debilitating ailments. Suddenly, they can barely make it from one room to the other and each day is a struggle. In one conversation, they contradict themselves completely but seem to be oblivious to this inconsistency. When this is brought to their attention, the invariably flip-flop back to the original perspective--they are healthy, strong and exceptional.

It may sound as though I am harshly criticizing my fellow patients and, admittedly, this dynamic has the power to irritate me at times. More often than not, however, I can relate on some very deep and difficult to articulate level. I live my life in very much the same way, it's simply easier to see when other people do it.

I pride myself on living a full and busy post-transplant life. I appreciate when people acknowledge that I work hard. I often speak of my gratitude and how I would never change a thing about my illness journey. All of what I'm saying is true.

A few times during my travels kind, innocent and unsuspecting audience members have congratulated me on my new lease on life, a life with no more physical obstacles. To this I immaturely respond with my long list of current medical problems, even the ones that don't bother me very much. Why? Because I am both healthy and unhealthy. Because, as much as it is a contradiction, I want you to see me as strong and fragile at the same time. As much as I want you to see me as an independent, healthy woman I also need for you to appreciate my struggle.

As I write this, it has become clear to me for the first time where this seemingly illogical paradox comes from. My deepest perception of myself is found walking the line between strength and fragility. I walk that line every day, as do so many other people with chronic illness. I know that in this moment I feel strong but in a few hours, days, weeks or years, I will be weak again. I may be strong today but years of sickness have worn me down on the inside, eroded parts of me that I can not get back.

And here we have yet another area of gray that makes up the Art of Illness. I may present you with one side of myself, the healthy side or the sick side, and yet that is only a two dimensional projection for you to witness. Please believe me when I tell you who I am in the moment but always remember that I am three dimensional and can not always keep track of my full self. In truth, I am wholly and completely both robust and fragile.

"I am fine, but just don't agree with me!"
"I am sick but that is not for you to say!"

Walking in Peace

I am discovering again just how much sweeter and more beautiful life is when you go through it at a walk, not a run.

My aspirations drive me to do more in a day and make strides towards...towards what? World domination? Outter space? Oprah? Who knows...sometimes the drive has a life of its own.

2009 has started out by me deeply evaluating where I am and where I want to be. While my career is a wonderful thing, 2007 was a blur. It's time to move back to the place of peace, believing in my worth no matter what my day planner looks like and practicing the gratitude for each day that I preach.

So what does that mean to you? More than likely, it means I'm going to take a little longer emailing, calling or texting you. But when we do connect? You will find a much happier and more open person on the other end.

The Art of Illness

I was driving down the road yesterday listening to an interview with Norman Cousins about how to take advantage of the body's own apothecary and heal oneself with love, laughter and hope.

A few nights ago, I watched Barbara Walters interview Patrick Swayze about living with Pancreatic Cancer.

A year ago this month, I lost one of my best friends to chronic rejection after she fought harder than I ever dreamed possible.

And because of all of these things, today I am immobile with grief and a sense of overwhelm.

From the moment we enter this world, we are taught to put all of life into one of two categories.

"Do you like this color or do you not like this color?"
"Do you like sports or art?"
"Are you a democrat or a republican?"

We define ourselves and our lives with black and white answers to simple questions. Illness is not so different.

"Are you sick or healthy?"
"Are you a fighter or are you giving up?"
"Are you living or dying?"

As I continue to explore the feelings and experiences of those who face illness (myself included) I sometimes find myself in a place of conflict, confusion and sadness. It was not until the convergence of the Norman Cousin and Patrick Swayze interviews, along with the anniversary of my friend's death, that these emotions came into focus for me.

I can not place my illness inside of your black and white boxes anymore. I can not continue to live by the limited labels you have assigned to me. I can not find peace in the contradictions until I have permission to believe everything at once. I have to live consciously and continue to walk the lines between acceptance and outrage. I must pull myself out from under your judgments and begin to live with this body as it fits the moment.

Draw Your Own Conclusions

During the Norman Cousins interview, he sited two significant studies about the power of the mind over illness. The first of the studies involved about 100 medical students, some of whom were given a barbiturate and some who were given a amphetamine. The trick, of course, was that the students were told the pill was the opposite of its true chemical compound--so the people getting stimulants were really getting downers and vise versa. 50% of the students reacted in line with the expectation, not the chemical reality of the pill.

The second study he sited was a true placebo study in which patients were told the medication they were ingesting would make their hair fall out. The pill itself was actually a sugar pill and 50% of those studied experienced significant hair loss.

The conclusion Norman Cousins made in this interview was that each study "proves the mind is more powerful than medication." Is that true? Is that what the studies prove? From where I sit it proves that for half of a given population the mind is more powerful than the medication. It also proves that for half of a given population, medication is more powerful than the mind.

As a patient, when I hear this Harvard Educated professional make such a strong case for why we have so much control over our own bodies, I feel both inspired and overwhelmed. I feel empowered and burdened with responsibility.

Do I have a choice of which half of the population I will find myself? Will I align myself with the reality or the expectation? Do I have the energy to heal myself or is that even in my power? In what parts of my life have I allowed the diagnosis to guide my expectations instead of rising above statistics and believing in my own power?

The Illness Cowboy

When I was watching Patrick Swayze talk about living with pancreatic cancer, I saw someone who was angry and sad about his illness. He stood on platitudes like, "I'm going to beat this thing" and "just watch, I'll be here in years to come." I found myself tearing up at the pain I was witnessing. I also was yelling at the screen, as if to will him through the television to stop the "act" and find peace with what we all know to be his inevitable outcome.

Having found truest peace in the soft bed of acceptance, I often pity those who run from its comfort. For me, acceptance is the path to peace. When I watched Patrick Swayze I saw a man denying his truth and apporaching the illness like a John Wayne charater--the Illness Cowboy. The human will is an amazing thing, no doubt it is what has contributed to him living so far past his diagnosis.

That said, when is it time to stop galloping in the opposite direction, get off of the horse and call a truce with illness and even death? When is the fight an act of cowardice and when in surrender the truest sign of bravery?

Western Omlet

Western medicine is in the business of black and white. Those who practice it usually live by statistics, research and physical clues. The job of the doctor is to speak and act in definates.

"You have cancer."
"There is nothing wrong with you--You're physical problems are all in your head."
"You have six months to live."
"You will be just fine."

As someone who has lived through the pain and confusion of a terminal mis-diagnosis, I know the power of gray posing as black and white. But it's what we want, isn't it?

We have all heard the stories, we know the legends. A patient with cancer baffles the doctors with a miraculous recovery. A patient diagnosed with acid reflux is discharged only to have a fatal heart attack hours after leaving the hospital. The list goes on and on, right? If you are looking for a story about doctors being wrong, you do not have to look very far.

The same could be said about the stories of doctors being right. Why do you think the show "House" is so popular? Because we love to watch the unexplainable be explained. We love the mysteries of the body to be revealed by the smart, dedicated and highly educated physician. We love to feel safe in knowing there are answers when we are most vulnerbale to the unknown.

The truth is, however, that sometimes the clear proclamations of healthcare profesionals are guesses. Sometimes, they are basing the information on statistics which, in the end, will mirror little of your individual experience. Sometimes, the result would have been the same whether you sought treatment or not. Sometimes, western medicine will be the difference between life and death.

Because we can not live two parallel lives making different choices in each, we will never know what would've happened if we had decided to choose a different path.

Just Because You Fight Does Not Mean You "Win"

I believe in the power of the will to live. More spcifically, I believed in the power of my friend Ruth's will to live. She was sick, we all knew she was. She never hid the fact that she had chronic rejection and often sent out emails to let friends and family know the latest update on her health. Every email ended on a positive note and she never gave in. I suppose I followed her lead, focused on the last sentence in the email and assumed her health would somehow stabilize.

The month before she died, Ruth finished two graduate classes (both with an A), went to work every day and found time for those of us who needed her. As sick as she was, her death was a shock. Why? Because her fight was so strong, it was blinding. Later, when I went back and read all of her emails, I saw that she was telling us the truth all along, I just couldn't quite see it through all the living she was doing. Each email was a little worse than the last; her lung function was dropping, the procedure did not seem to work, she was not responding to the new treatment, they were running out of options. It was all there in black and white but her aliveness did not allow me to put her in a balck and white box. She was living and dying; something few of us have a context for.

Ruth taught me so many things. I never want to boil her life down to one accomplishment or one legacy. She, in herself, deserves an entire book and at least one movie. But one of the greatest lessons I learned from Ruth is what nags at me when I listen to people like Norman Cousins. Sometimes, we can do everything right; we can have all of the passion and purpose in the world and we can fight like hell but our mind will not "win" over our body. Sometimes, when we want to live more than anything, it is still our time to die.

Is there someone out there who would tell me Ruth could have fought harder, changed her fate with a meditation, a way of life? Is there a doctor some where, some place that could have done something differently? When it's "our time" is there anything that can be done? Can fate be manipulated?

What I Know Now

What I know now is that I know, for sure, very little. I know that I have conflicting beliefs and that is very uncomfortable. I know that I want black and white answers but need to begin to train my brain to accept competing thoughts as simultaneous truths.

I know that I believe in the power of my own thoughts, beliefs and emotions. I know that they can and do impact my physical health.

I know that Western Medicine is flawed and does not always support me as a whole, sentient being. I also know that it has saved my life and given me more tomorrows than I ever imagined possible.

I know that I believe in finding peace through accpeting what fate has given you. I also don't know when I am accpeting fate and when I am accepting a mere story that will serve to help me shape my fate, even if that was not the only possible outcome.

I know that sometimes I am inspired by the idea of having power over my body. I know that sometimes, I am powerless but feel guilty because others tell me I can be stronger, better, more in control.

I know that sometimes our will to live will bring us far beyond any expectations. I also know that sometimes the body gives out, no matter how passionate we are about living.

It has been a relief and a revelation for me to realize that I walk around with thousands of conflicting beliefs about illness and one's power over it. I know that I must now begin to trust myself to use what I can to live well, to know when bravery means surrender and to never project myself onto others living with illness.

There are so many people out there who have all the answers to life with illness. I used to think I had to choose one of those answers and live by it, refuting all other approaches. What I know know is that they are all true and they are all false, it simply depends on where you stand in the illness journey.

I won't promise to stop trying to make sense out of living with illness. After all, that is what makes me appreciate what it means to be a part of the Sick World. What I will promise is that I will stop beating myself up for not "being stronger in my convictions" and understand that all approached can simultaneously exist.

I now know that there is an Art to Illness. The Art of Illness is being conscious of where you are emotionally and physically, gathering advice and inspiration from others and using what works when it works. Today may be the day for the battle, tomorrow may be the day for quiet rest and there may come a day for peacefully acceptance of life's permanent changes. The key is not getting attached to any approach, honoring them all and always making self-compassion the focus.

Like writing a song or putting paint to canvas, we can never know the beauty we are creating in this moment. When it is done out of integrity and respect for the authentic self, however, the beauty is inevitable. It's time to say goodbye to black and white living and embrace the ever fluid, always forgiving, Art of Illness.

No Matter

No matter how much potential there is in this moment...
No matter how much beauty there is around me...
No matter how alive the conversation is, buzzing around my head...
No matter how much I want to feel inspired...

When I feel deeply tired, I can not connect or feel any of these things.

No matter how many times I go through this...
No matter how many times I have returned to vibrating with the world...
No matter how many affirmations I repeat...
No matter how sure I am that this will be okay...

I still feel scared about my health and alone because I can not feel my purpose.

No matter if I am being irrational...
No matter if I am repeating myself...
No matter if I have forgotten my worth once again...
No matter if I will be okay tomorrow...

You continue to support, comfort and lift me up. Thank you.
Most days, I love my life. On days like today when I can not feel that love, you hold it for me until I have the energy to vibrate again.

It took a village to save my life and now, some days, it can take a village to remind me of what I am here to do.

To those who lift me up when I am low, thank you.
To those who let me soar when it's time to fly, thank you.
For those who love me no matter what, thank you.

No matter how my life ebbs and flows, I am grateful for you.

New Video!

Here is something I have been working on with Scott Person--my new "Bed's Eye View" video! This is a small sample of the lectures I give to healthcare professionals and students. Full length video lectures are available upon request.

Coming soon--video of patient and family workshops!

Is that a Bedside or Bed's Eye View?

When a patient is given news that they need to follow certain guidelines or have a particular procedure done the natural reaction is to look to the healthcare provider for insight. "How is this going to work?" "What am I supposed to do now?" "Will this hurt?" "How long is the recovery time?"

Often, I have asked these sorts of questions only to discover later that the answers I had been given were not coming from the patient perspective but from the eyes of the caregiver.

No Pain, No Gain

One big issue for many people with cystic fibrosis is being underweight. (I know, I know, how many people would love to have that problem? Trust me, it's not as fun as people seem to think it is!) Because of a "sludgy" GI system and the lack of digestive enzymes, CF patients are trained early on to eat high fat and high calorie foods. (Ok, this part isn't bad. But hey, there has to be some benefits to illness for each of us, right?)

Since I can remember my parents, my doctors and the dietitians have been singing the praises of high fat foods and special milkshakes which have around 600 calories per serving. Sounds logical, right? Infuse one food item with as much fat content and calories as possible, make it a part of the patient's diet and problem solved! Well, maybe for some patients but not for me.

Ingesting high fat foods and calorie-packed shakes usually result in me on the floor, doubled over with stomach pain. Somehow, this little detail never seems to get factored into the dietitians' weight gain formula. It has taken me years to let go of this philosophy which had been carved into my brain. I now know the foods that I enjoy and can eat a lot of without pain. So, I may not be drinking 600 calorie shakes but I will eat a higher volume of foods that won't hurt my stomach. In addition, the foods I eat are often healthier and without all of the preservatives that come with many high calorie items.

Recently, I went to a CF education day and the dietitian was lecturing on possible food combinations that would increase calorie consumption. Just looking at the list of foods she had printed out made my stomach hurt! Hot Pockets? Glazed doughnuts dipped in chocolate? Ouch! I was flaberghated that these were the food recommendations until it hit me: these were suggestions made out of thoery, science and logic, not experience. Ironically, health science and quality of life are often not compatible!

Better You Than Me

Two years after my second transplant, new research was indicating a link between chronic rejection and acid reflux. It was believed that, no matter how mild or severe a person's reflux may be, there was opportunity for stomach acid to aspirate into the lungs and cause damage, triggering chronic rejection. Because I had been down the chronic rejection road already, my team was anxious to have me iliminate this potential threat through a stomach sugery called a Nissen Fundoplication. For better or worse, I agreed.

When consulting with the GI surgeon, I asked all of the normal questions. "How does this work?" "What will the pain be like?" "How long will I have to miss work?" For each question, his answers were very reassuring. He described the surgery and assured me that the procedure was a very simple and straight forward one--the surgery itself would take less than a few hours. It was lapriscopic so there would be no major inscisons to heal and I would be out of the hospital in a day or two. Sounds easy!

After the surgery, my nausea was excrutiating. I was in the hospital for four days and spent weeks recovering at home. I couldn't eat without horrible pain and when I tried to go back to work I was too weak to make it through half of my shift. It would be almost a year before I could eat normally again. The Nissen Fundoplication had turned out to be far from easy.

To be fair, I know other people who have had this procedure and I certainly had a more difficult time than most. However, when I think back to the conversations I had with my surgeon, I realize that his descriptions of how things would play out had very little to do with what I would experience and more to do with his perceptions as a surgeon. My belief now is that because the surgery was easy for him, he translated his experience to the patient. In fact, when I went for my follow up appointment, his focus was on the healing of the laproscopic scars, not on the difficulty eating or the nausea. These things seemed to be of little concern to him and, I imagine, something that wouldn't stick in his brain to pass along to future Nissen Fundoplication paients.

As a surgeon, he described the procedure from the bedside view, from the surgeon's perspective. The surgery was short, very little cutting and a quick inpaitient stay. All of these facts added up in his mind to a simple procedure. Because he had not described this surgery from a patient perspective, nor was he focused on understanding the patient perspective, he had not adequately prepared me for the Nissen. My expecations were not properly aligned and this made the recovery even more difficult.

The bottom line? This man is a wonderful surgeon (truly, despite this story, I really like him) who would be an extaordinary surgeon if were just able to incorporate one piece of patient advice: just because the surgery is simple for you to perform does not mean it is simple to recover from it!

What I Know Now

There are some healthcare professionals who have a genuine interest in the patient experience. These are the people who ask questions and want to hear honest answers about how things have gone in the past or how they are going presently. After my Nissen Fundoplication one of my doctors heard that I was having trouble and sought me out. She wanted me, and some other patients with similar trials, to write out our experiences, starting with the consult and ending with an assesment of the procedure. We sent these essays to the doctor who read them, considered them and ultimately chose to be more careful in deciding when and to whom they recommended this surgery.

There are other practioners who have little interst in the patient experience and, I am completely guessing here, possibly have difficulty putting themselves in other people's shoes in many aspects of life. This does not mean that these professionals lack skill or are should be passed over for another doctor or nurse. In fact, these people could be at the top of their field. What it does mean, however, is that they are unlikely to be a good resource for a patient looking for clues as to what lies ahead or considering their quality of life in a particular equation.

Listen to what you are hearing. Does it match with your experience or the experiences of those around you? When the professional is explaining things, are they speaking mostly from their perspective or are they talking about what other patients have expressed to them in the past? If you begin to get a sense that your caregiver is not one to look at things from a "bed's eye view" consider what they are telling you but also seek out additional patients and professionals to give you a better idea of what may be in store for you. We can't all be perfect at everything so there's no need to blame a caregiver for not being good at thinking through quality of life issues but it is your responsibility to use your common sense and find someone who can.

Input and Output

This blog and I have been quiet for a long time. It was a well-needed break. It's not that this blog is a great burden. Compared to how often I wrote during 2007, I barely wrote anything in 2008. But it is one more thing on a long list of places where I put energy outwards. This year has been revolutionary in my life. I have experienced more success and adventure than I can ever remember having. I have built a career in a short period of time and continue to be absolutely astounded that people want to hire me to speak. No matter how well things are going I still have that voice in the back of my head saying "What do you have to say that's unique and important enough that you should request an audience?" I used to be bothered by that voice and labeled it "lack of self-esteem." I suppose that could be accurate but that voice also motivates me to be better, stretch and try new and fresh ideas.

But I digress.

For me, this has been a year of talking, and talking, and talking (and then talking about talking). I reached a point in early December of plain old emptiness. I was talked out. My ideas were getting stale and I needed a reboot. I needed to compensate for all of the output with some input. I wanted to learn for awhile, not teach. I wanted to be quiet, not talk. I wanted to plant seeds, not gather flowers. So I got surgery on my mouth. I needed it and it was one surefire way to make myself stop talking. And even after my mouth healed, I still wanted to be quiet. And I am still not ready for much talking.

While 2008 was amazing, it was also out of balance. This year, I seek balance in my input and output. Don't get me wrong, I hope to speak as much or more than in 2008. Public speaking is my passion. But I also want to listen. I want to take classes and learn new ways of thinking and looking at life. I want to take vacations and stop thinking for awhile. I want to play as much as I work...well, ok. Almost as much.

The lessons of illness inform my life now, as always.

1. There is nothing that can't be declined or canceled. Nothing I do (or don't do) will cause the earth to come to an abrupt halt. Say no when you have to, or even when you just "should."

2. Society tells us that life is about accomplishments. When the dusts settles, accomplishments will not be at your side when you are sick, alone or scared. Creating meaning in your life should never be at the sacrifice of creating meaningful relationships and appreciating love.

3. Live it now because today could be the healthiest day of the rest of your life.

So many people have been overwhelmingly kind to me this year. To all of you who have encouraged me this year, exchanged ideas, read my book or helped me find my place: Thank You.

May 2009 be a year of love, health and dreams coming true for all of us. May those who are suffering find strength and comfort.

May we all learn from what is given to us, no matter how painful or sweet the lesson plan may be.

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.

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.

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?

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!" ?

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??

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!!

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.

Great Review

Thank you, Jim!
Check out this book review
It is so generous and well written!
I love it!

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?

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!

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
:)

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

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.

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!!!

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!

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!!!

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?