Thursday, July 30, 2009
Friday, June 26, 2009
Perhaps it is time for me to stop apologizing and just say that I will do my best to post as often as possible. March and April were so busy (not complaining) that it took all of May and most of June for me to recover. I am finally starting to feel human again.
This is my down time for the year and it is filled with writing a new book. Not the book I have promised in the past; that had to be put on hold until 2010. This book is called "Finding Your Voice: A Patient Advocacy Workbook" and I am honored to say it is grant funded.
I got the idea to write this book last year when I was giving a workshop at a local retirement community. Two residents were saying that they were uncomfortable with the fact that they didn't have a solid patient advocate nearby; like a child or a spouse. The people who would be advocating for them would be friends and acquaintances and so they doubted the advocates' abilities to know the finer nuances of their wishes. It is my hope that this workbook will provide a resource for friends, acquaintances and even strangers to understood not only the "check the boxes" wishes of the book's owner but to also understand their experiences, beliefs and goals. If we understand these three things, we will be a good advocate.
A secondary but equally important function of this workbook is to allow people filling out the pages to learn more about themselves in the process. Often we have general ideas about things but, when prompted, realize we haven't thought it through all of the way. Sometimes, it takes being asked a question to see your beliefs in a new way. So, while this book is designed to be a tool for the reader it is my hope and belief that it will also be a clarifying and affirming journey for the owner.
Finally, a third purpose to the workbook has emerged and that is to look at all of the ways that we can function as a patient advocate. When we use that term, for most of us, it conjures up images of a person pounding on the nurses station and demanding answers. That is one kind of advocate, one I call "The Tornado Advocate." While this is a valuable person to be or have on your side, this is only one sample of what it might look like to be an effective advocate.
Perhaps you are the person who sits by the bed to comfort the patient in times of fear or overwhelm. Perhaps you are the person who is "behind the scenes" and deals with insurance, bills and other paperwork. Perhaps you are motivated to function less at a personal level and prefer to be involved on a community, state or national level. This are just a few more snapshots of patient advocacy roles; all of them are equal and all of them should be respected.
This workbook will be looking at many different advocacy styles and activities. The book will be broken into "advocating for oneself," "advocating for a child," "advocating for a spouse, sibling or friend" "advocating for a parent," and "advocating for a stranger." In each of these sections there will be stories, tips, refection questions and a place to write action items.
I have already interviewed two wonderful people with great advocacy stories. One woman told me the story of her daughter being diagnosed with CF and not receiving quality care from her local hospital. With determination and passion, this mother did not blindly accept the bad news her doctors gave her but sought out every avenue she could find until she found better care. Today her daughter is 16 and a cheerleader. She attributes her daughter's life to the fact that she got better care and did not accept what she felt in her gut to be incorrect information.
Another woman I spoke to told me about the catch 22 she finds herself in: she makes $1,000 a month which is too much for prescription aid but her co-pays on two medications alone are $850.00 and $400.00. Inspired by her own need and the thought of other patients now and in the future, she has taken her case to the state and national level. With a meticulous and tireless letter writing campaign, she has gotten the attention of her state and US senators. The wheels turn slowly, but she is turning them.
These are just the kinds of stories I need! Do you have any stories about patient advocacy on a personal, community, state or national level? If so, I would love to set up a time to interview you for the workbook. Without your stories, this book simply won't happen.
What are you waiting for? Email me! firstname.lastname@example.org
Thank you as always for your support and generosity. Life is good for me and I hope it is for you too.
Friday, May 29, 2009
Next month I am trying something new: online seminars.
I have decided to make my my first webinar available only to CF patients, families and friends. Due to cross infection issues, CF folks can not really come together for seminars anymore and this is my solution to that unfortunate reality.
I have provided the webinar information below. If you would like to pass this info along to other people in the CF Community, I would greatly appreciate it.
Project Compassion Presents: "Finding Your Voice in the Healthcare Maze" facilitated by CF patient and two-time double lung transplant recipient, Tiffany Christensen.
In each session, the primary focus will be advocating for yourself or someone you love in a healthcare setting. Secondary topics include advance care planning and the myths and truths of organ/tissue donation.
The webinars will be 3 Saturdays in a row: June 13th, 20th and 27th. They will take place at 3:00pm EST.
For CF patients, friends and families within North Carolina, there is no enrollment fee. This webinar is being underwritten by a North Carolina grant and there is no cost.
For CF patients, friends and families within the USA but outside of North Carolina or for those in Canada, the cost is minimal.
To attend all three sessions: $25.00
To attend two of the three sessions: $20.00
To attend one of the three sessions: $10.00
To register visit: fyv.webtrain.com and click on "Browse Upcoming Events" and click "register now" under each session you wish to attend.
You may also register by sending an email directly to Tiffany at email@example.com. Be sure to include contact information and the sessions you wish to attend.
To pay for registration (only for those outside of North Carolina), please visit:
and click on "Register for the CF Finding Your VoiceWebinar."
To learn more about Tiffany, visit www.sickgirlspeaks.com
Questions may be sent directly to Tiffany at
Tuesday, May 19, 2009
Thursday, May 7, 2009
Once again this blog has sat silent for a long time while my life took on a hectic pace. I always feel so guilty for not writing and I miss the opportunities to share the things I'm thinking about. I write notes down on scraps of paper to revisit later but it just isn't the same as when the thought is fresh in my head!
I'm not complaining. Things have been busy because my work continues to gain momentum. Honestly, when I take the time to think about that, I find it hard to believe. I feel so lucky.
I want to tell you about the highlights of my travels but I have a meeting to prepare for in just a few minutes. Hopefully, I will have time to write more this weekend.
In the meantime, a facebook friend wanted to see the list of my Top 10 Tips and Tricks for Navigating the Healthcare Maze. You can find that below....
That reminds me to mention, I do a lot of my connecting these days on facebook with pictures, status updates and checking in on other people's comings and goings. If we aren't friends on facebook yet, look me up!
Until next blog, BIG GRATITUDE to you.
Tiffany's Top 10 Tips and Tricks for Navigating the Healthcare Maze
1. Knowledge, Awareness and Boundaries are the first three keys to effective patient advocacy. Gone are the days of relaxing and letting the doctor call all the shots— Be a humble, polite, persistent Squeaky Wheel!
2. Here’s the greatest irony of illness: when you are at your worst is exactly the time when you need to be at your best! If you aren’t up for self-advocacy, bring some one who can do it for you.
3. Being sick is difficult. Be kind to yourself and find ways to process your emotional needs while catering to your physical needs. Healing can happen no matter what the physical outcome.
4. There is power in the Written Word. Use signs whenever you can. Always take notes when getting medical instruction. Keep a list of your medications so you don’t have to repeat yourself.
5. Know the medical hierarchy! If you have a problem with a caregiver, it pays to know where to find their boss!
6. Seek out other patients who have traveled a similar road, they may help you avoid potholes.
7. When you seek out other patients who have traveled similar roads—be careful who you listen to—they may be a pothole.
8. If you go to a surgeon, they will want to do surgery. If you go to a medical doctor, they will want to give you medicine. If you go to an acupuncturist, they will want to give you acupuncture. What do you want to do?
9. Always ask direct questions. Never assume that your doctors are telling you “the whole truth and nothing but the truth” unless you have looked them in the eye and specifically asked what you want to know.
10. Illness is difficult but, if you look hard enough, you might find it also offers opportunities for growth, gratitude and joy.
Thursday, April 16, 2009
At the same time, there is a side to illness that we often ignore: The gifts.
While we must acknowledge the feelings of loss and frustration that inevitably accompany illness, we may also open up to the opportunities of growth, understanding, and gratitude that illness can provide.
• I Am Not Illness: We know that the body and mind have a strong connection, and there is power there, but let’s also connect with the separation between body, mind, and spirit. What does it mean to “be sick”? Is it possible to suffer physically while suffering less (or not at all) emotionally/spiritually? Is there a differentiation between “healing” and “medicating”? While illness often takes up much of our lives, we are not illness. Our body is sick, yes, but there is a place within us that is never sick, never scared and never tired. Illness gives us the rare opportunity to find this place deep within us and discover our identity in a whole new way.
• Taking Control: If you spend enough time in healthcare settings, it is almost impossible to ignore the value of patient empowerment through patient advocacy. Through our own knowledge, awareness and ability to set boundaries, we become our most powerful caregiver. In a room of experts, we are the foremost authority on our own body and experiences. By embracing this role, we have an opportunity to take control even when life feels completely out of our control.
• Still Body, Forward Mind: As our bodies become less able, we can find strategic ways to use limitations as a motivation to explore the unexplored. As an example, illness may allow us to take a risk, working with paint or putting pen to paper, as way to express our feelings and discover new understandings of the self. While this may not have been something we would have considered as a fully healthy-bodied person, we may now find joy in unexpected activities and practices.
• Self-Help: Coping with pain and other physical discomforts can be overwhelming. Are there other techniques, outside of Western medications, that can aid in decreasing discomfort? Perhaps we might discover meditation or acupuncture can help us with pain, therefore decreasing the need for more “chemicals” getting added to the mix. If nothing else, we must find ways to alleviate our emotional discomforts to help ourselves have the highest quality of life possible.
• Why Me?: People facing illness often find themselves in a crisis of faith. “Is God punishing me?” is a common question people ask. Illness may provide us an opportunity to explore our faith deeper and more authentically. It may even open doors to new spiritual traditions. For all of us, even if the objective is not to find a way back to faith, we can all find a connection with That Which Is Important. Ideally, one might even discover a greater purpose to their suffering.
• Equal Opportunity Compassion: People dealing with illness may feel depressed and cheated. This is normal reaction and should not be judged. However, when the time is right, it is possible to transform self-pity into compassion for the self. From there, it is a natural step to experience true compassion for others. This is a fulfilling life choice that can be made despite any physical limitation. Once you have experienced your own suffering, you have increased your capacity to care for those suffering with similar or different challenges.
• Loving Through Illness: Difficulty can make people grow apart or grow stronger together. It is undeniable that illness can put a strain on relationships. People will react very differently and sometimes those reactions are painful. What is important to know, is that despite illness, relationships remain a two way street. Armed with compassion for ourselves and those we love, we can examine our own conscious or unconscious expectations; honoring the various roles people play during illness and work to build, not tear down, bridges.
• Transforming The Illness Identity Crisis: There is something that happens when a person becomes sick and they lose their sense of purpose. Those around the patient have difficulty knowing how best to relate to them as they no longer have the same activities and interests. Tiffany refers to this as The Illness Identity Crisis. Illness provides us with the opportunity of realizing who we are beyond our self labels. We can strive for a deeper knowledge of self. By giving ourselves the task of creating internal projects to better ourselves, we are defining our purpose and connecting with our evolving identity.
• Saying Goodbye My Way: We all must leave this earth at some time and in some way. There is one undeniable benefit to being sick: the opportunity to plan ahead. When a person is taken unexpectedly, there is no time to say goodbye or talk about their wishes. Illness allows us to talk about final desires (advance care planning) and even planning how we would like to be memorialized. There are healing qualities of writing our own obituary and eulogy, even if we are not facing terminal illness. This type of “framing” will help us live a more purpose-driven life. Above all, we have the opportunity to express to our friends and family what we want them to know and remember about our love for them.
• Gratitude without Limits: After a person comes to a place of acceptance with illness, the next step is moving into gratitude. Illness gives us the gift to consciously embrace the unique experiences of living on earth. As we continue to open our eyes to That Which Is Important, we can find appreciation for life in places that most people would never even notice. Through our struggles, we may discover ways to use gratitude as a source of joy, despite any illness we may be dealing with.
Saturday, March 28, 2009
If you criticize yourself internally, you will criticize others externally.
Until you stop judging yourself, you will not be able to be a compassionate person.
How will you stop the internal critic?
How important is it to you to be compassionate to your fellow humans?
Can you live in a world with only observation and no judgment?
Tuesday, March 24, 2009
I remind myself that on earth nothing is permanent and this pain will not always be with me.
I trust that this state of pain will not last forever and I will again have peace.
Today, as I feel this grief, I worry that I will never be happy again.
I remind myself that on earth nothing is permanent and this grief will not always be with me.
I trust that this intense grief will not last forever and I will again have peace.
Today, as I feel so alone, I worry that I will never have the support I need again.
I remind myself that on earth nothing is permanent and I will not always need this support and other people will not always feel so distant.
I trust that this feeling of loneliness will not last forever and I will again have peace.
Today, as I feel so scared, I worry that I will never be able to overcome this fear.
I remind myself that on earth nothing is permanent and I will find a way to handle what is filling me with fear, or it will change and no longer be so scary.
I trust that this state of fear will not last forever and I will again have peace.
Today, as I face the unknown, I worry that my life will never be the same again.
I remind myself that on earth nothing is permanent and it will change no matter what, even if this current unknown turns out to be benign.
I trust that this state of instability will not last forever and I will again have peace.
Today, as I feel so bored, I worry that I will never feel invigorated again.
I remind myself that on earth nothing is permanent and I will become engaged in life again.
I trust that this state of boredom will not last forever and I will again have peace.
Today, as I feel this fatigue, I worry that I will never have a day when I have passion for life again.
I remind myself that on earth nothing is permanent and I will have energy again.
I trust that I will not feel tired forever and I will again have peace.
Thursday, March 12, 2009
I was driving down the road today and the sun was shining and I had the radio on full blast. I was singing at the top of my lungs and couldn't help but notice how strong my voice was and how effortless is was to sing. In that moment I was struck with such joy and gratitude that my eyes welled up with tears. I have a lot of moments like that one.
I was born with a genetic illness called cystic fibrosis. This disease primarily effected my lungs, causing constant infections and difficulty breathing. By the time I was 21, my illness was end stage. I was dying and I hadn't even been able to graduate from college. If it hadn't been for the gift of my first set of donor lungs in 2000, I would not have lived to see my 27th birthday.My life changed completely that day; I did not know what it felt like to take a deep breath until I had a lung transplant.
My life changed again only 2 years later when the doctors told me that my lungs were failing and I was getting very sick very quickly. I was devastated. I couldn't understand why I had been given this amazing gift only to have it taken before I had the chance to do the gift justice. I had not made a positive impact on the world in the way I felt someone with my good fortune ought to do.
Through a series of unusual events, my doctors decided to put me on the list for a second lung transplant. At that point, I had less than 6 months to live and no one was sure I could hold out until a donor became available.
On March 28, 2004 a precious life was taken from you and a precious gift was given to me. I was 30 years old and I had been given one more shot at making a meaningful life. Your loved one's lungs seemed to be very compatible with my body and I had a relatively easy recovery from my second transplant. As soon as I woke up in ICU I began planning for how I would honor you, your loved one and my loved ones by giving back to people who's lives have been touched by illness and loss. Since the moment I left the hospital, I have done everything I can to not waste a moment of time.
There are no words to express the gratitude I feel for the profound and compassionate choice you made on such a dark day in your life. I can only imagine your pain and am in awe of your ability to think of others during a time of such grief.
As the fifth anniversary of your loss and my rebirth approaches, you are often on my mind. I wish that I could take away your pain but I know this is a silly thing to wish for. I can hope that there is comfort in knowing that your loved one has saved lives but I know this may not always bring comfort. All I can do is live each day with gratitude in my heart for you and by singing with joy at every chance I get.
My heart goes out to you at this time. On behalf of myself, my friends and my family, I thank you from the bottom of my toes for your generosity.
All my love and respect,
Wednesday, March 11, 2009
1. A good doctor will make you feel like you have a partner in your efforts to get well.
2. A good doctor will care about your whole life, not just your physical problems.
3. A good doctor knows that practicing medicine is about relationships so they will look you in the eye and communicate in a compassionate but concise manner.
4. A good doctor will be your advocate within our complicated system and use his/her position to improve your quality of life.
5. A good doctor will listen to your story like a detective, picking up illness clues as you go along, so that they may solve your illness mystery. And they will do this even when they are in a hurry.
6. A good doctor will be skillful, brave and meticulous while somehow managing to stay humble.
7. A good doctor knows when to think outside the box or bend the rules for the good of the patient/family.
8. A good doctor understands that, sometimes, holding a patient’s hand through difficult times is just as important as prescribing the proper dosage of medication.
9. A good doctor discovers that in order to be an extraordinary caregiver, they must learn how to take good care of themselves first.
10. A good doctor understands that, in their practice, they walk a line between science and mystery every day.
Tuesday, March 10, 2009
The Junior High Effect
One of the rarely discussed but often difficult parts of many medical treatments is the effect on one's ability to go to the bathroom. Anesthesia and narcotics can make a person unable to go to the bathroom while some other meds will cause frequent, unpleasant and unwelcome trips. Talking about poo and pee is not encouraged in this culture (is it in other cultures?) but, rest assured, this is a major issue for many people dealing with illness and medicines. For those who are suffering with stomach issues, it really can be unbelievably miserable.
After my first transplant, it took a long time for my stomach to recover from the anesthesia. In fact, I was eating with no "output" for 14 days. Yes, two weeks. I had a raging and insatiable appetite from the steroids and, despite my condition, continued to eat and eat long after I had become a 'Buddha Belly.' It was rather astonishing how much my stomach expanded and I can honestly tell you, I rarely thought of much else. When I wasn't shoveling food in, I was lamenting what I had just eaten. I walked the halls as much as possible trying to make things move. It ranged from highly uncomfortable to almost unbearable.
By week two, I was obsessed with my stomach and growing increasingly irritable. I was snapping at everyone who came in the room. Everyone, that is, except my doctors. Somehow, when the doctors were rounding, I was able to turn on my happy patient face. We laughed and joked about my misery and being F.O.S. (full of shit). No matter how bad I felt, when they walked in my mood and demeanor did an about-face.
I wasn't playing a game and I wasn't even faking my cheer. When I saw my team walk in the door, I really did feel an energy boost. And it wasn't just me. When the docs came in, my father became very talkative and jovial. My mother became sweet and proper. My sisters beamed with gratitude and smiled widely. My brother became very professional and authoritative. Each of us changed in a very noticeable way when the doctors came by. The family picture they saw when they walked in my hospital room was not a false one but it wasn't an entirely natural one either.
So what is that about? Why did I go from whining, complaining and crying to laughing and grinning just because men with white coats walked in the room? Why did my whole family change their tune? I can only think of one explanation. This is a result of The Junior High effect.
As much as we would like to believe that we are all grown up now, the truth is we will forever carry with us a piece of junior high. Those were the days when all that mattered was who was popular, who had cooties and where you fit in the pecking order. In those days, a good day might have been marked by the most popular girl in school asking if she could borrow your pencil and actually knowing your name. A bad day would have been when the most popular boy in school said you stuffed your bra. Whether you were a jock, nerd or drama kid, the impressions of social ranking were branded on our brains during our time in junior high.
When my doctors walk in the room, I am the geek and they are the cool kids. I am excited by the attention they are paying me and this emotion masks some of my physical problems. I want them to like me, to praise me and to accept me as one of them. Over the years, my reaction to this desire for acceptance has varied. Nonetheless, whether I was rebelling against their power over me or trying to prove I was worthy of prom queen, the person they saw before them was not always "the real me." Considering the amount to which physicians rely on observation in treating patients, this is worthy of noting. So, to the "cool kids," what you see may not be what others see when you leave the room.
Do You See Me?
I have been seeing some of the same doctors for nearly 20 years. They have seen me sick and they have seen me healthy. They have seen me in the depths of depression and on top of the world. More than anything, they have seen me at my most vulnerable.
Perhaps it is that past vulnerability that drives me to "prove" to them that I am now strong. Recently, I sent my doctors and nurses an email about a talk I was doing in the hospital. It really had nothing to do with them, I was going to be speaking to medical students. So why did I send the email? Because I want them to see me, to see the person I have become. I want them to witness my work and approve of me. Like a little child, I want them to be proud of me.
They, perhaps even more so than I, know the fragility of my life. Because of this, they may never see me as I see myself and that bothers me. I spent so long living a smaller life than I was capable of, I want them to now understand my true potential. I want them to see me differently. I want them to stop viewing me as "just a patient" and see me as a colleague of sorts.
It has only been within the last year that I have been able to see my doctors as human beings and not superheroes or villains, as the case may be. Perhaps with time, as I continue to pull back the curtain, I will find they do see me as a whole person. Or, even better, perhaps one day I will overcome my childish need for their approval and just appreciate our relationships just as they are.
What I Know Now
I hate to add more weight to an already heavy load, but being a good healthcare professional is not only about being skillful with medicine. There is immense power in the patient/caregiver relationship. A physician's interest in a patient's well being can inspire a desire to be compliant and even spark a person's will to live. Equally, a lack of interest can make a patient feel isolated and without the support needed to make a valiant effort at getting well.
Whether you like it or not, healthcare professionals are often regarded as the top of the line in human beings. An encouraging word or a snide comment can make all the difference to those who admire them. When we are weak, we may rely on the strength of the professionals around us. When we are well, we may seek to prove ourselves worthy of their care. Being an effective nurse or doctor means being willing to also be a friend and a parent. Being Student Body President isn't easy.
Friday, March 6, 2009
A few months ago was the one year anniversary for the death of a beloved friend. Today I was thinking of her and missing her presence. On a whim, I decided to google her name. Being that she was a smart and active woman, there were lists of articles written about her and by her. Some had pictures and some had only her words. Through the tears in my eyes I felt the closeness I had been longing only a moment before. Here she was, in front of me, speaking through words of days past. It was as though we had been able to share a cup of coffee for just a little while. Somehow, with her image and language only a key stroke away, my grief was soothed.
I have been noticing other ways in which the power of the internet is gently influencing the grieving process. I am one of the millions of facebook addicts in this country and rely on it for way too much of my own socialization. For those who don't know, Facebook is an online networking site that makes it easy to keep in touch with hundreds of people at once, and yet somehow manage to create the feeling of closeness.
In the past year, I have had several facebook friends die. Because of the rules of facebook, the only person that can close down a facebook profile is the person themselves. This means when a person dies, the facebook page will remain. What I didn't expect was how people would continue to use that facebook page.
In all of the instances I have witnessed, people continue to write on the "wall" of the deceased person's profile. Sometimes they are sharing a funny memory the two had shared that made them smile that day. Some days they will express their deepest sadness and difficulties with getting through that day without the one they love. Other times, they will simply stop by and say "hi." In all of these postings, the grieving are speaking directly to the dead, without any sense of embarrassment or awkwardness. They are not talking about their loved one, they are talking to their loved one.
It is, in a way, the cyber version of a grave stone. A central place to go where a person's energy is stored and all who knew them are welcome to visit. It is a place to cry and share. It is a place to tell the ones we love we still care and they are not forgotten. It is, in my opnion, beautiful and unique. In a culture where we have so few ways to openly process our grief, there on facebook, we are loving those who left us behind.
I don't have profound words about the social implications of this new trend. I don't know really how it fits into our cultural grieving paradigm. All I know is that today I visited my friend on the Internet and it helped me feel close to her. When I go to the facebook profiles of those I love, I somehow feel like I am walking in the footprints they left behind. This, I think, is healing.
Thursday, March 5, 2009
I had a strong suspicion that what I was feeling was a result of acute rejection. Unlike chronic rejection, the illness that made it necessary for me to have a second transplant, acute is usually treatable with heavy doses of steroids. Intellectually, I understood that there was little reason for grave concern. Despite this, I did not resist the impulse to allow my thoughts to travel into the realm of worst case scenario. What if this was something serious? What if I was facing my third terminal illness? What if this was the first day of the ending of my life? What if all of my healthiest moments were behind me?
To some, this might seem like a ridiculous and morbid road to travel. After all, I am normally quite a positive person who holds true to the motto: "Be optimistic now, you can always cry later." But for me, for where I have been in my emotional and spiritual journey, pondering the end does not feel morbid or ridiculous at all. Walking beside the presence of death has become second nature to me and thinking about it in such concrete terms is only one mental step forward in consciousness from where I operate normally.
So, under my pile of blankets, I took that step into "what if" and was slightly surprised by my own reaction. The more I thought about shedding this "mortal coil" the more my body relaxed. I was practically melting into the fibers of the couch cushions. Stress was draining out of me and I was feeling a sense of relief I did not even know I needed. All of the obligations, the pressures and the striving for goals were transforming in the fantasy of my life coming to a close. Most of what mattered moments before no longer seemed to be of such value. I was becoming free again.
We all have stories and beliefs we function by. Some of these we may be aware of and others we may not. Certainly, after my experiences, there are many reasons for the work I do and how I do it. Stories play in my mind and tell me that "I must do all I can, while I can" and that I "have a mission." These are inspiring and humbling thoughts that drive my every day attitude and work ethic. What I learned on the couch that day, as stress evaporated along with my fever, is the interpretation of these internal stories needed some serious attention.
For the sake of argument, let's say that I am correct in believing that I have a mission and should do as much as I can regarding that mission while I am here on earth. Let's also say that there is nothing wrong with this as a basic core belief. But how then am I defining the mission and what does it mean to "do all I can"? This is where my feet may have fallen off of the path and ego took over. I shaped the definitions to these things early on in my career and they were all based on external confirmation of my worth. There was a staircase of ways to the top, and the top was Oprah. When I reached her, I would have fulfilled my destiny!
It sounds silly to say out loud now, but I developed a strong attachment to the goal of being on Oprah. As time ticked by, I was becoming more and more impatient and disappointed that Oprah was still nowhere in reach for me. Oprah was in my mind when I wrote, spoke and made plans for my career. At the time, I had no idea that Oprah was tormenting me.
It wasn't until I felt the weight of the Oprah Goal lift from my neck and shoulders that I understood that, what was once an innocent dream, had become a burden too heavy to carry. By being attached to such a specific and lofty goal, I had stopped concentrating on the mission and mostly focused on the outcome. In doing this, I was not only causing myself undue stress but I was missing out on the brilliance of my own life as it was without Oprah.
As a sick person, I am surrounded by the meters of success our culture provides. As a sick person, I have often felt I did not measure up to many of these. To have a college degree, to own a home, to travel the world, to have a full time job--these are the archetypal images I have of what it means to be a grown up. Oprah was going to be my fast track to getting full grown up status. Once again, however, I am now grateful for the wisdom of illness as I look back on the lessons I have learned from a lifetime of being sick and attempting to find worth in an occupation.
When I was 16, one of my first jobs was in a sandwich shop. I prepared the sandwiches in front of the customers and one day I had a coughing fit while doing so. My cough sounded horrible even though I was not really contagious and, not surprisingly, the customer refused the sandwich. After a brief confrontation, he left the cafe. I was embarrassed, hurt and confused. My boss was unbelievably kind about the whole thing and encouraged me to not let that one person make me feel bad about myself. What a wonderful man! But I was also not stupid, as much as I tried, I could never stifle the cough when customers were around. Food prep was probably not a good place for me to be.
My next job was in a book store which seemed like a much safer environment. One day I was not feeling well and I was checking people out at the register. I must have had a surly look on my face because the customer told me I "try should smiling sometime." I was taken aback and was not aware that I looked so unpleasant that I deserved this public facial reprimand. Sometimes, when we are very sick, it is all we can do to speak, stand and shuffle the papers around. I simply didn't have it in me to smile too.
In both of these early work experiences, I learned the expectations of those around me were that I should appear and act "normal." Being that I wasn't normal, this caused me stress and I sought elaborate coping mechanisms to fake it. Each job search came with its own questions of places to escape if I needed to cough, public interaction and flexibility of sick time. The pressure I felt to be normal also started me down the path of major overcompensation, meaning I would have rather crawled to work than call in sick.
As time went on, cystic fibrosis became a bigger and bigger part of my existence and the line between life and work grew thinner and thinner. With the strong drive to continue faking it and to appear "normal" (aka employed) sacrifices had to be made somewhere. As my body grew weaker, these sacrifices became more dramatic. It came to a point, when I was trying to live the dream of being and actor and a director, that my days revolved around the next rehearsal or performance.
Each day, I would sleep as much as I could in order to have enough energy for the theater. I did treatments religiously, not so much for myself, but to stay in the game. During a show's run, I would hold out on going into the hospital or getting home IV medications. As a result, each show's closing was followed by a trip to the emergency room and a three week hospital stay. This all seemed perfectly worth it to me.
I'm not judging this approach to living and working with illness. Who knows what is best when you factor in quality of life and the value of pursuing one's gifts. At the same time, however, it must be noted that what I saw as a skillful balancing act at the time was actually quite out of balance. Because I had set work as the priority, everything else suffered. The only social life I had was at the theater and my days at home were quite lonely. I was putting my body under tremendous stress and pushed it well beyond its limits because "the show must go on." I was so attached to the goal that I had very little outside of it.
The question I have now is not whether this was a right or wrong way to approach a career. What I wonder now is where that motivation, the drive to seek normal, was really coming from. Was it coming from a genuine passion for the work, a passion so strong that it deserved to be the orchestrating factor in my life? Was it coming from a place of ego, a need to prove that I was a working actor? Perhaps it was old fashioned denial? In a world where there are no role models for success without achievement, I wonder, could it have simply been that I didn't know any other way to be?
There comes a time in the lives of many chronically ill people when they have tried every angle and they still can't make their career work. The "balance" I spoke of above no longer gets them through the day and they begin to face consequences of missed work, increased illness and narrowing strategic options. This is often one of the most devastating times in a person's life. The loss of self, independence and purpose can be staggering. The perceived ending of dreams and what seems like years of wasted hard work can make a person feel angry or completely lost. For many of us, we do not go softly into this goodnight and there are many attempts to go back to work before we finally settle into a life without the ever-important career. What we see laying before us is a void too deep to initially comprehend.
For me, saying goodbye to working was the first time I came face to face with my powerlessness over my own illness. Up until then I could still manipulate it, wrangle it like a wild bull, when I needed to. The day I stopped working was the day I felt the bull had won and I was gutted. I was vulnerable to every fear and every dormant thought of my own inadequacy. I had been able to be someone, to have labels, and now I was left with being "The girl who sits on the couch and watched Oprah"? What was my point of existing? Why was I here? And more importantly, would anyone see my life as meaningful? My ego was in a state of complete panic and I had no idea how to live in a world without striving for "success."
What was amazing was that after the sadness and the insecurities passed, I found that it was actually very easy to fill my days. I had projects and routines but also found great pleasure in the flow of freedom. I connected with myself in a deeper way than I ever had and came to love who I was, not what I could accomplish. Over time, I began to wonder how people could live lives so consumed with work! How did they have time for themselves? It was during this time that I began to redefine the meaning of success for myself. Who is more successful, the unhappy movie star or the perfectly joyful Girl on the Couch Watching Oprah? I was beginning to embrace the idea that it may just be the latter.
So, this brings me back around to laying on the couch, under a pile of blankets and letting go of Oprah. Somewhere along the way, after the second transplant, I had clearly slipped back into the old mindset of success. Big conferences, more books, a name for myself: is this what it was really all about? If it was, I was beginning to see it was completely unsustainable for me. I couldn't handle the internal or external pressure. I was fading out of joy right into the need for others to me I was performing as expected. My dreams had become goals and those goals had become burdens. It was time to reframe. It was time to stop being attached to Oprah and discover the way to true fulfillment in my life's work.
It didn't take long before I had the opportunity to practice a new way of carrying this out. I was teaching a patient/family workshop of about 50 people and we were on a lunch break. I scarfed down my food so that I could have enough time to prepare for the next segment. I was in my usual speaker's "chicken with head cut off" mode and searching out a second microphone. In my mind, I needed that microphone and the post-lunch workshop's success depended on it.
As I made my way through the tables of people, participants kept popping up out of their chairs to talk with me. They had questions or stories they wanted to share and that takes time. Time I felt I needed to get that second microphone set up. When I spoke with the first few people, I was polite and to the point. I restrained myself as much as possible from looking over their shoulder, anticipating my next move on the hunt. When the third person stood in my path, I had only made it a few feet into the room and the clock in my head was ticking louder. I was getting frustrated.
As this man spoke to me, I started out seeing him as an obstacle to a very specific goal: the microphone. At some point during our conversation, however, I thought of myself shivering on the coach and letting go of Oprah. This was it, my moment to reframe. I took a breath and stopped glancing over his shoulder. I calmed myself and took a more planted posture. I made myself listen, not humor him, but really listen. In that conversation, I found the joy for my work and the fulfillment I was lacking previously. We connected, shared and were present together. He told me things I was honored to know and responded genuinely. I was not a speaker looking for a microphone, I was a person lucky enough to have a perfect stranger feel compelled to tell me his truth. I was transformed there, in that moment, and never wanted to be a speaker looking for a microphone again.
I never made it across the room that day. With every step, another person stood before me and we connected about whatever had brought us there that day. When the second segment began I did not have the microphone I needed. And no one, including me, cared. This is the work I want to do and the way I want to do it. The beauty is, I don't need to be running a workshop to make this happen. With each person, each day, I can choose to look over their shoulder for that microphone or I can be honestly present. With my life, I can choose to cling to attachments, shadows of goals I set in the past, or I can live it as it best served right now. Is success in this moment taking a nap instead of writing a new chapter? Then so be it. Is canceling a work meeting for lunch with a friend the more healthy choice today? Then it is the successful choice.
Illness teaches us so much. If nothing else, it has taught me that now is all we have. I will never pretend to not have ambitions or desires but those must be monitored so that they do not become burdens. I must define success for myself and not let this society tell me how valuable or not valuable I am. On the day I am laying on the couch with a fever and it is the beginning of the end, what will I remember? The disappointment and angst I felt about not being on national television or the conversation I had in the workshop where I never got a second microphone? I think we all know the answer to that.
So, today, I say goodbye to Oprah. I have let you go and I am free to be successful right now.
Wednesday, March 4, 2009
Often, this science serves us. Often, the belief in data and chemicals is proven true by a predictable outcome. Often, medicine works as expected.
But what about the days when science fails us? When the treatment we thought would be so simple goes terribly awry? Or, what about the patient who regains health after all hope of medical intervention was lost? If something does not work 100% of the time as we predict, how can we believe it to be true science? What becomes of the doctors who rely on science for their view of the world and those they treat?
I have known many doctors in my life. Each to their own degree, they allow the combination of science and mystery to instruct their practice.
I have known doctors who treat me as a grouping of cells and disease processes. These are the doctors who I find to be arrogant and blind to my basic human-ness. These are the caregivers who will leave me when my illness is untreatable or confusing. These are the same ones who think they have all the control and can not bear to give any of it to anyone, especially a patient.
It is my experience that the best physicians are the ones who are never so bold to believe they are up to the task of being a doctor. They walk the tightrope of uncertainty and scientific structure without clinging too strongly to one or the other. They remain confident in science while taking a deep breath through all that they do not know. This, the physician's paradox, is what makes the doctors I have loved extraordinary caregivers.
Monday, March 2, 2009
But, I took a break over the past few weeks for health reasons. I have been feeling fatigued for a month or so and have gone to see the docs about it. We all assumed it was usual winter blahs and, since my lung functions looked great, we left it at that. At some point a few weeks ago, I started having low grade fevers and it clicked--I had a strong feeling this was acute rejection. This is different from chronic rejection, so please don't get confused.
Chronic is what caused me to have a second transplant and can be very serious. Acute rejection has the possibility of being serious but, more often than not, it can be treated with high doses of steroids with no real lasting ramifications. So, when it clicked that I had felt this way before, I asked for a bronch to see if I was right.
Long story short, I was. I had acute rejection and it was treated last week with high doses of IV steroids and now I am on high doses of oral steroids. It isn't fun being on these crazy drugs but I knew what I was getting myself into and was prepared for the emotional roller coaster. All in all, it hasn't been too bad physically.
Emotionally, it was just what the universe ordered. I hope this isn't too strange to say, but I needed to get in touch with the sick world and take stock of my priorities, goals and perspectives. When I am looking down the barrel of illness, there is no more powerful way for me to get my values in order.
I am so grateful for the fear I felt as I wondered if this was the beginning of another end.
I am so grateful for the time spent with IVs and procedures, it reminded me the beauty of being free and, at the same time, the value I have even as a person wearing a hospital gown.
I am so grateful for all of the love and support from my healthcare team, friends, family and strangers. I am a lucky, lucky patient.
My time back in the trenches of the sick world, as short as it may have been, reminded me of the lessons of illness that are sometimes easy to gloss over in times of health. I got a lot of things sorted out in my head and I can't wait to share them with you!
For now, however, I must just leave you with the pic of me before my bronch and a promise of more later, and soon.
I'm off for dinner with a good friend and ain't that what life is all about?
Love to you all!
Sunday, February 15, 2009
One of the great freedoms that comes with age is the understanding that I am different than you. Just because I respond to a situation in one way does not mean you will have the same reaction. We are all bound by the commonality that is our humanness but, at the same time, I often find myself in a state of awe at just how unpredictable and mysterious my fellow man/woman really is.
Whether it is a religious belief, a work ethic or the technique used to squeeze the toothpaste tube, we live in a world with endless choices and opinions. When we hold a narrow view which includes only that we which believe to be true, we find ourselves in a place of judgment, frustration and conflict. When we expand our view to allow ours to co-exist with those around us, we find ourselves in a place of fascination, expansion and compassion. It took me a long time to understand that when I welcome your foreign perspective, it does not then cancel my own. I can both live by my truth and respect yours.
While this applies to life as a whole, it also specifically applies to life as a patient. There is an unspoken criterion for what makes a "good patient" and those outside that criteria may find themselves being judged for not measuring up. A good patient is compliant, happy, agreeable, motivated, respectful and grateful. On several occasions, I have been asked by both healthcare professionals and family members how to make a patient fit these criteria. They wanted tips on how to inspire or shame a person out of anger, fear or self-pity. While I agree that those states are not optimal for recovery, they are a part of healing from the inside out. You can not feel gratitude until you have allowed yourself to feel self-pity. There are no shortcuts.
In addition, there are many ways to be a patient. The "good patient" shoe will not fit on every foot. To see all patients as capable of behaving this way is to see those who don't as failures or, a more popular term, as victims. I won't lie and say I don't get frustrated when I see patients who are locked in their own prison, victimized by their illness. It seems like it shouldn't have to be that way but who am I to say what your experience should be? Likewise, who is my nurse or my doctor to tell me how I should or should not be reacting to anything?
Truth be told, healthcare moves at the speed of light and few professionals have the time to uncover the motives, feelings or needs of anyone acting like a "victim." These patients slow down the process, make the job of caregiving harder, and therefore these are the people who are judged, written off or just misunderstood. Perhaps if we all stop seeing healthcare through our own eyes, we can take a moment to look at the different ways people react to and move through illness. Perhaps by doing this we can have more patience, more compassion and have more to offer.
Patients come in all shapes and sizes, ethnic and socio-economic backgrounds and pre-existing personalities. Just for fun, I have drawn some patient portraits with my words to match my observations over the years. It is my hope that this will generate some thought on just how different we all are and how we can be treated accordingly. Despite wearing the same paper gowns, we all react to the crisis of illness in our own, unique way.
Because at the bottom of any illness scenario is the feeling of being out of control, I have focused on how different individuals seek comfort within the unpredictable world of illness.
The Compliance King or Queen
Finding Comfort: This patient finds comfort in doing everything they can to have control over the illness.
Becoming Empowered: This patient feels most empowered when they have a skill set, rules to follow or schedules to maintain that, when implemented, will result in better health.
The Draw Back: This is an ideal patient, medically, but runs the risk of becoming neurotic about missing a dose of medicine etc.
Caring for The Compliance King or Queen: This patient will have a hard time when there is nothing else that can be done medically and may be better served having tasks and goals to give the illusion of control no matter what.
The Sensitive Patient
Finding Comfort: For the Sensitive Patient, life revolves around relationships and the relationship between themselves, their loved ones and the healthcare professionals is paramount in their care. More than anything, the Sensitive Patient finds comfort in having family and friends close by to encourage maximum healing.
Becoming Empowered: Empowerment for The Sensitive Patient may come from those around them affirming the need to have the patient get well and be in their life. Sometimes, The Sensitive Patient finds it easier to be motivated by others' needs than their own desires.
The Draw Back: These patients have a hard time being taken care of because they are most comfortable being the in the caregiving role themselves.
Caring for The Sensitive Patient: This patient has a tender heart and will be troubled seeing the pain and worry in the eyes of those they love. It is important for those caring for them to remind them often that the caregivers are getting something out of it, like a sense of closeness or service.
The Potentially Proactive Patient
Finding Comfort: This patient finds comfort in external validation. This can be difficult to come by in a healthcare setting. This patient will find the most comfort when they discover their own power, perhaps as an advocate for themselves or a mentor for other patients.
Becoming Empowered: For this patient, the feeling of worthlessness can be devastating. It is essential to guide this patient to finding a way to be empowered within this role of patient.
The Draw Back: This patient can become angry and non-compliant if they feel they are not being treated as a competent person. They hold the potential to rebel to prove a point, which can be detrimental to their health and healing.
Caring for The Potentially Proactive Patient: Healthcare professionals will find treating this patient as a peer will inspire a greater sense of responsibility and therefore a greater motivation to be proactive in their own care. Most important, this patient must find ways to feel valuable within their illness circumstances.
The Alternative Patient
Finding Comfort: This patient finds comfort in going outside of the norms and looking for their own solutions to healthcare problems. This may include seeking supplemental alternative therapy, a spiritual approach to healing or creating their own healthcare game plan.
Becoming Empowered: This patient feels most empowered when they are not conforming to the traditional health plan but instead, finding new and progressive alternatives.
The Draw Back: These patients run the risk of going so far outside the norm that they miss out on the benefits of common medical practices.
Caring for The Alternative Patient: As a caregivers, it is best to encourage a integrative healthcare approach which will allow for maximum treatment options while satisfying this patient's needs for new ideas.
The Analytical Patient
Finding Comfort: This patient finds comfort in the pursuit and mastery of pertinent medical knowledge.
Becoming Empowered: This patient will be the one who earns an honorary medical degree through exhaustive research on whatever health issue they are facing. This patient finds empowerment through satiating their desire to posses as much knowledge as those treating them.
The Draw Back: This patient holds the potential to be blinded by their own studies and not rely on the real life experience of those treating them.
Caring for The Analytical Patient: The Analytical Patient may question diagnoses, make their own treatment recommendations or seek new healthcare professionals practicing with the most state of the art philosophies and techniques. This patient is best served when regarded as a consultant in their own care; they will respond best when their research and analysis are carefully considered by the healthcare team.
The Wide-Eyed Patient
Finding Comfort: The Wide-Eyed Patient finds comfort in observing, asking about and participating in the healthcare activities around them. Unlike the Analytical Patient, this is not an academic endeavor but rather one in which they find joy in new experiences, even in the midst of illness.
Becoming Empowered: This patient may ask to watch the screen during a bronchoscopy or to push their own IV medications through the line. It is through this exploration of the world around them that they feel most empowered.
The Draw Back: This patient has fears and worries just like all other patients but may mask that with their curiosity in the world around them.
Caring for The Wide-eyed Patient: It is important to indulge this patient's curiosity as much as possible but to not let it completely hide the need for emotional support when the "fun" is over.
The Bossy Patient
Finding Comfort: This patient is easy to spot. They find comfort in controlling their environment and the people in it.
Becoming Empowered: This patient often sees themselves as an authority on many things and might make strong assertions based on little factual evidence. They require being informed in detail about the options and issues at hand. The Bossy Patient feels most empowered when, after gathering enough information, they feel they are "calling the shots."
The Draw Back: This patient can become consumed with their own anxieties to the point that they do not notice the discomfort they are causing family, friends or professionals with their demands.
Caring for The Bossy Patient: The Bossy Patient is often loud and holds the potential for emotional outbursts. It is best when treating The Bossy Patient to keep them as calm as possible, reassure them that their opinion matters and try not to take any outbursts personally.
The Passive Patient
Finding Comfort: This patient finds comfort in trusting the authority, in handing their fate to those doctors and nurses who know more and have the skills and experience it takes to handle a healthcare problem.
Becoming Empowered: This patient feels most empowered when they have someone close to them who can coach them and support them through the healthcare experience. They are capable of being their own advocate but need validation and encouragement to act on their own behalf.
The Draw Back: While the trust The Passive Patient holds for professionals makes this patient easy to work with, there is a price to pay for violating this trust. Once a professional has behaved in a hurtful way or made a medical error, this patient has the potential to explode or, at the very least, stew silently while planning their escape from your care.
Caring for The Passive Patient: This patient will appear to have few opinions and will usually be quite pleasant. The Passive Patient rarely questions professionals and will often remain quiet even in the face of emotionally insensitive staff. Do not be fooled by this exterior, however, because this patient is watching and evaluating everything. It is in the privacy of friends and family that The Passive Patient will reveal the pain, anger and trauma they experienced in silence.
So, what do you think? Do you see yourself in any of these portraits? Have I painted a realistic characterization of you or some of the patients you know? What patient portraits have you observed? Do you think that if we embraced the idea of everyone coping differently, we would have a more compassionate healthcare environment?
Thursday, February 12, 2009
Maybe that's part of why I work so hard. Maybe that helps inspire me to find the opportunities for growth and discovery within difficult or unusual circumstances. I feel most valuable when I help people, when they see themselves in me and find a new, undiscovered strength. I feel most valuable when I am "making a difference."
What's wrong with that? Nothing except that my work is not sustainable 100% of the time. No matter how healthy my body is today, no matter how smoothly work is going, no matter how much I am surrounded by those I love, I still have days where I am not who people want me to be. I have days in which I am sad, tired, discouraged or lonely. But this is not the side of me people find helpful so this is the side of me that does not feel valuable.
Yesterday was one of those days. At times I feel a weight on my shoulders; the unanswered emails, the lack of blog posts, the book chapters not written and the marketing that has gone cold. It is days like this when the work outweighs the joy and I feel too small for the tasks at hand. I feel like my fatigue is a sign of weakness on a road in which I have not gone far enough. I feel like I am not enough.
So, what does one do on a day like this? Push harder? Lay down? Cry? Reach out?
I experiemented with all of those things. Pushing harder made me feel as though my heart would explode, this body and mind were already at maximum capacity. So, I stopped pushing and tried trusting. Trusting that one day without work, a week without blogging, a month without marketing, would have to be ok. I trusted that the work I have done already will carry me through the times when I have less to give. I trusted that if this is truly what I am meant to do, it won't all come crashing down. I had to trust that taking care of me would be of the greatest benefit in the long run.
So, I laid down. I cried and I could feel the stress melting out of my back. I reached out to friends and family for support and held on to the knowing that they would love me even if I quit working today and never wrote another sentence or gave another talk. And then, I remembered all of the times in the sick world when I had to stop pushing and give in to the truth of my body and the fatigue of my mind. I remembered the warmth that came after accepting that today was not going to go as planned.
I remembered learning from my CF days that there is nothing that can not be rescheduled. So I made it a Cancellation Day and canceled all of the meetings on my calender. They could wait until I felt better and would be more productive then anyway. I canceled and canceled and canceled and guess what? The world did not stop spinning, the sun kept on shining and no one seemed to notice. How ego wants me to believe that taking a break will ruin everything for everyone! But, time after time, I see there is nothing that can not be rescheduled.
After I cleared my schedule, I lit a candle and had an afternoon of Sacred Television. To appease the critical voices in my head about "not doing enough" I have learned to make rest as much of a ritual as meditation, work or socialization. So, when the candle is lit, and the television is on, this is sacred time for my brain and body to rest.
Today, I am still tired but I do not feel lonely or discouraged anymore. Healing is my responsibility and it does not only apply to times of obvious physical illness. Healing is also needed in times of fatigue, stress and self-doubt. Today, I will continue to nurture myself with rest and compassion. I will give myself permission to write, market and push myself another day.
Oh, but wait. I just wrote something, didn't I? Progress!
Oh, Mr. Balance, how you puzzle me!
Thursday, February 5, 2009
Here is one of the graphics he designed for us....ain't it purty?
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.