Friday, January 30, 2009
Today I was meditating and I began asking myself what this "winning" the sprint would look like? Is there money involved? Does it depend on fame? Prestige? Amount of books written, talks given? When I reach the finish line, how will I know I've won?
I'm sure you're smart enough to know the answer to this riddle: I won't. Because there is no winning and my life isn't a sprint. My journey isn't a straight line of asphalt and no matter how fast or slow I'm traveling, it's a winding road forever changing in texture and scenery.
Today my meditation showed me another metaphor, a better way of seeing my life. Instead of a race, I saw myself putting paint to canvas. Creating a life with different colors, brushes and techniques. Sometimes, the shapes on the canvas look beautiful and other times the colors blend together to make an unattractive hue. But it is no matter. Pretty or ugly, fluid or stilted, what matters about this canvas is that I have no idea what I will paint on it next. What matters about this painting is that it has no beginning or end. It has no deadlines so there is no reason to rush the creation. All that matters is that I continue to paint, continue to choose new and intimidating colors and always remember that this painting will never face a judgmental eye. This painting, even in progress, is already perfect.
Just in the moment I shifted this metaphor of my life, my breathing became easier. I am no longer running a sprint, hoping to win some arbitrary prize for "fulfilling my destiny." My destiny is already here and it exists with every stroke of the paint brush. There is no need for running unless it is out of joy for living.
Tuesday, January 27, 2009
1. A good social worker will remind you that what is happening on the inside is just as important as what is happening on the outside.
2. A good social worker makes all of the complicated paper work and bureaucracy look completely manageable.
3. A good social worker is 10 steps ahead of the patient and family, ready and waiting to be their support for what lies ahead.
4. A good social worker can get you to open up even when you don’t want to...and when you don’t even know that’s what you’re doing!
5. A good social worker cares about the patient more than the rules.
6. A good social worker makes you feel like you've just made a new friend.
7. A good social worker finds creative solutions to complicated problems.
8. A good social worker becomes your advocate when you are too sick or tired to stand up for yourself.
9. A good social worker does their job for the love of helping people, not for the pay.
10. A good social worker is like a honey bee; dedicated to working with those they serve in the illness “hive” but equally active in gathering sweet resources out in the world to give to those who are in need, when they are in need.
Monday, January 26, 2009
Well, it's a new year and time to take things to the next level. For me that means concentrating more energy on booking large conferences all over the place. I have been looking and looking for loopholes to the cold call but today, I decided it had to be done.
I placed 3 cold calls with 3 hospice conferences. I got voicemails and that suited me just fine! It really wasn't so bad. As long as I made the call about what I believe in and not about me, it was fine. Do I look forward to doing it again? Ummm. Not really.
Dreams really do come true, and they have price tags attached! :)
Sunday, January 25, 2009
Last year, I had my 4th/8th post transplant anniversary. In my world, 8 years is nothing to sneeze at, even if I had to go through a second transplant to get there. 8. Nice even number and it's almost the big milestone: 10.
So what did I do to celebrate last year? Not much.
For my birthday I had a grant meeting. Albeit an exciting meeting, but it was a meeting even so. My family had the usual party and it all went by with soft shoed fan fare.
For my transplant anniversary, I wrote a letter to my donor family and made mention of it to close friends and family. Really, not even soft shoed fan fare would apply in this instance.
In thinking about my 36th birthday in July and my 5th/9th year transplant anniversary in March, and, well, I want to express the meaning with some tap shoes this year.
It occurred to me that meaning is something that we often expect to simply exist, to be, a fact. But in truth, often times for things to "have meaning" it requires us to slow down and decide to give it the attention it needs in order to meet its meaning potential.
Logically, you might say a birthday has as much meaning when it is quietly appreciated by the person blowing out the candles as it would if there were a big party accompanying the day. I don't think that is true. When I pass by my birthday on the way to a meeting and blow out candles after dinner, how much time have I really taken to reflect and consider the events that led to that day, that moment? Very little.
But when I have a party to celebrate the joy and fortune of being here on earth one more year, the planning of the party, the presence of good friends and family and the role of "birthday girl" all beg me to think about what this day really means. I have given the birthday the kind of attention it requires to be truly meaningful.
In this fast paced world, do we too often pass by birthdays to go to meetings? Do we really take enough time to allow a meaningful moment, day, anniversary to feed us with the fruit of perspective and appreciation? Not always, no.
Well, this year will be different for me. This year, I plan to be deliberate in Making Meaning Matter. This year, I will give my time on earth the time and appreciation it deserves. This year, I will honor meaning by proving that I can slow down long enough to soak meaning into my pores.
So....Karaoke Party anyone???
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?
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.
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.
Saturday, January 24, 2009
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.
Sunday, January 18, 2009
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.
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."
"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!!
Thursday, January 15, 2009
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!"
Wednesday, January 14, 2009
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.
Tuesday, January 13, 2009
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 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.
Monday, January 12, 2009
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.
Friday, January 9, 2009
Coming soon--video of patient and family workshops!
Thursday, January 8, 2009
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.
Sunday, January 4, 2009
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.