Often when I go on the CF forums or facebook groups, someone will make a comment like, "you suck CF", "let's kick CF's ass", "I hate CF”, or “let’s fight CF”. These mainstream ideas are hard to avoid. Doctors, patient advocacy organizations, and popular culture all frame disease in this way. I find these ideas very violent, negative, and unhelpful, though I blame no one for thinking such thoughts. The only way that our culture contextualizes disease is by framing it as an enemy to be fought in battle and defeated. It is the only idea offered that gives us any sense of control over our lives. But when the battle is waged against our genes or against an amorphous cause, who is it that we’re really fighting? Ourselves. Who gets caught in the crossfire? You and me.

For years I have tried to resist the urge to engage in this cultural battle against myself. I have been searching for positive ways to look at my struggle with cystic fibrosis that help me live a more fulfilling and productive life. Violence is destructive, so what is creative? I’ve discovered ways to view CF as being a valuable tool to become a deeper, wiser, more compassionate human being. Recently, I discovered a metaphor that I believe to be beautiful and powerful: living with disease (or with any challenge or hardship at all) is like striking a drum. By actively engaging in the difficulties of life – by playing our drum – we can make beautiful music that brings joy and wisdom to the world. We make our society richer, more dynamic, and more enlightened by playing our song with purpose and dignity. I believe this metaphor to be much more powerful than the old battle motif, and so I will explain how it helps me make my life more creative and joyful.

Because I've been so focused on presenting the research and medical discoveries that I've come across through this website, I have neglected to write about possibly the most important part of my healing regime: exercise. My whole journey to self-healing started when I got serious about exercise. One day I realized that exercise is not just something my docs tell me to do (that's probably why I was resistant for so long, actually); it is truly a powerful physical treatment and a spiritual cleansing. For me, exercise means being outdoors, challenging my body to discover its own potential, clearing my mind of the day's thoughts and worries, and becoming quiet enough to listen to the innate wisdom of my body and of nature.

Since becoming very strict about my exercise regime, which consists of at least an hour of hiking, yoga, or jogging everyday (plus biking and walking everywhere - I hardly ever use a car), my disease has been radically altered. Before I started this routine, I was physically weak and would huff and puff up a flight of stairs, get exhausted after a short walk, and was fatigued pretty much all the time. At the beginning of my new exercise routine, my FEV1 jumped almost 10% in a month! Now, even though my FEV1 has declined somewhat, I am stronger and more fit than I have been in years. I can do more rigorous physical activity for longer periods of time than I could when my FEV1 was higher. In this way, the numbers have little bearing on my quality of life. I wanted to make up t-shirts that say, "Screw the numbers, I feel great!". Truly, I care a hell of a lot less about my FEV1 than I do about how my lungs feel, how strong I am, and the quality of my emotional life.  Of course, I am trying to increase my FEV1, and most likely it would have dropped a lot more in the last year and a half if I wasn't exercising so regularly. The stronger my muscles get, the more efficient they become at using energy and oxygen, so I can do more and go farther on less. I am tired much less often now, which also has a lot to do with the improvements in my diet that I've made. 

I also feel that the muscles and tissue in my lungs themselves are healthier from so much stimulation and increased blood flow. Although my FEV1 has declined, my CT-scans show little change in my bronchiectasis, and even a slight decrease in the bronchiectasis in the upper lungs! I believe this has everything to do with how exercise helps me clear out the mucus, increase the blood flow to my lung tissue, and improve the elasticity of my airways through constant movement (remember, bronchiectasis is a loss of airway elasticity). My posture has also improved, and my chronic low back pain has pretty much disappeared (yoga is wonderful for this). 

In addition, exercise improves insulin sensitivity. Physical exertion burns up the sugar stored in your cells to fuel your body. When that sugar is used up, the cells need to restore their supply, so they upregulate the number of insulin receptors on the cell membrane so that insulin can push more sugar from the blood into the cells, reducing our blood sugar. This is another reason why we need to exercise regularly - to maintain insulin sensitivity and to keep our blood sugar under control. So exercising when we're "sick" and plugged up with mucus is very important not only to move all that junk out through coughing, but also to increase our insulin sensitivity, which can decline when we are stressed or have an infection. 

In Chinese medicine exercise is considered to facilitate proper digestion, as it balances the liver-gallbladder complex which also governs emotional health. Furthermore, with damp conditions involving a lot of mucus, exercise is considered critical to their treatment as it introduces "wind" into the body, drying up the dampness as a breeze dries a wet cloth that hangs out to dry. When I am feeling lethargic and tired, instead of napping which usually makes the situation worse, I go for a hike. Even something as simple as walking or hiking builds chi in the body, clearing away the chemicals and energetic stagnation that makes us feel tired. In Ayurveda, it is understood that our bodily energy comes from the prana, which mean "life force" and enters us through the breath. Without fail, I feel more energized and alert at the end of every hike, even if at the beginning I felt like I wanted to curl up in the ferns on the side of the trail and take a nap. Building chi through exercise is a very effective way for me to boost my energy and fight fatigue. 

But the best part about exercising is the mental and physical satisfaction that I get from being outside in nature and doing something to nurture myself. I don't do exercise because my docs tell me to. I do it because I love it, and because it is helping me on my spiritual path. And I can clearly feel the results. For me, exercise is also a practice in cultivating greater awareness of my thoughts and emotions. Through movement, I become more human, more at one with the energies that I create and that surround and move through me. 

And there are so many ways to exercise; so may activities to choose from! From walking to biking, horseback riding, dancing, rock climbing, running, snowboarding, sledding, yoga, working out, hiking, martial arts, gardening, swimming, ice skating... basically anything that moves your body! These things are also known as "fun", by the way. The human body was designed to exercise, either gently or rigorously, all day everyday.  Even standing up or walking from one side of the room to the other is healthier than sitting at a desk for hours. This is true for humans in general, but especially for CFers who can't afford to let that mucus pool in the lungs for too long. As my friend Colin tells me, "Let's get the gravy out!". 

Exercise was what started my journey towards full empowerment. Exercise allowed me to see the effects of taking full control of and responsibility for my life. I realized that healing is my responsibility. No one is going to do it for me. If I want healing, then I have to do it myself. Period. This realization gave me back such a sense of power, something I had lost after so many years of victimizing myself and being psychologically dependent on other people to "take care of me". It became clear that my life is what I make of it, and if I want to be happy and healthy, then all I have to do is make an effort to manifest it and believe that I am happy and healthy. Health can be defined in so may ways, but to me, it means living life fully and with great awareness of myself and how I move through the world. Can health really be defined by numbers? No, I don't think so. Health is a state of mind-body-spiritual balance. Can we be healthy even when our numbers are low and when all the test results come out "poor"? Hell yes! Health is a state of mind. I have met plenty of people who are free from "disease" but that I would not call healthy because their emotional, mental, and spiritual lives were out of balance and unsatisfying to them. It's obvious that there's much more to us than our cells and organs, so having a more holistic, non-materialistic view of health and wellbeing is very helpful to me in living a happy life. 

Anyway, I could go on and on philosophizing, but the main point is that exercise is not only critical for maintaining physical health, but it also helps us become more complete, happy human beings through the fulfillment of our full potential. 

I also want to mention the Cystic Fibrosis Lifestyle Foundation, a national organization that gives grants to people with CF to pay for exercise opportunities that may be financially out of reach otherwise. I get a scholarship from them to go to yoga. Don't let money get in the way of exercising! If you think you could benefit from an exercise grant, please check out CFLF and send in your application (it's really simple and your chances of receiving a grant are very high). Also consider donating to the organization if you're able! 

I was raised to question authority at every turn. Both of my parents, being highly educated with advanced degrees from Ivy League Universities, understood from direct experience that those in positions of power and authority are not necessarily the most intelligent or most knowledgeable in their field. I have learned the same in my work in state, federal, and university governance. More often they are the people who are best at following rules and who are most loyal to the institution and its dogma. In other words, these people in positions of authority are the most invested in seeing that the institution continues to exist and that its ideas are perpetuated into the future. For they’ve staked a good chunk of their lives and their livelihoods on the fact that what the institution professes is right.

This is completely understandable, as the ordinary human mind needs an ideological anchor of some sort. And this is particularly understandable in the field of medicine, for the majority of people who become doctors want to do so because they desire to help people, reduce suffering, and cure disease. I sure am glad they have this altruistic desire, for otherwise I would not be writing this - I would have died a long time ago. Doctors go to medical school because they believe what is taught there is right, or at least that it helps. But the deeper we dig, the more we begin to see that all human knowledge is limited by the very nature of knowledge itself. Communication and observation of natural phenomena is imperfect, and even the most accurate portrayal of reality is simply a metaphor, symbol, or representation of what is real. Language is a tool, a medium used to make connections between the phenomena of the natural world and the human mind. Language is imperfect and always will be.

Thus, the knowledge and beliefs that institutions are invested in are, by their very nature, imperfect and ever-transforming. The science of today will be considered incomplete and outdated in 20 years, as the science of 20 years ago is considered incomplete and outdated today. This is fantastic, because this means that science is non-dogmatic, and can constantly reevaluate its assertions and its language. However, some people within the institutions of science - for example, doctors – can become dogmatic simply because they’ve invested a lot of time, money, and belief in certain things being right. We’re just humans after all, and many of us have a hard time admitting when we’re wrong or when the information we’ve been taught is no longer useful. But the best doctor or scientist is the person who, upon receiving new data and research, can completely shift their paradigm and create a new understanding of the way things work. This is a sign of true intelligence.

Once we, the “patients”, understand that the institution, whatever it is, operates on incomplete and ever-transforming information, then we begin to see that it is not in our best interest to give away all of our power to an institution that may not actually be right. What is in our best interest is to use what useful information and resources an institution provides to help us heal ourselves and reinforce our own power. In short, we must remain empowered.

Every human is born with an innate power to heal ourselves (allopathic medicine calls it the "placebo effect"). The best doctor in the world cannot do the healing for the patient. The doctor can provide the patient with every drug and medical procedure out there, but it is up to the patient and the patient’s body to use those tools to repair the body and bring the body back into a state of balance and health. The best doctors and healers understand this and so seek to strengthen their patients’ innate healing powers by educating them, encouraging them to make their own decisions about their health, assisting in the development of their self-knowledge and intuition, and providing them with every tool at their disposal. In other words, the best doctor does not heal, the best doctor empowers. This is similarly true for the parent of a CF child. An effective CF parent empowers the child, as early as possible, to take charge of her own health and helps her to recognize her own power.

Unfortunately, the importance of empowerment and self-healing is rarely taught in medical schools anymore. Prospective doctors are taught that X drug cures headaches via this mechanism, or Y procedure mends bones via this mechanism. Medicine has become a mechanistic dogma where the patient plays very little role in the treatment. Even the word “patient” has always perturbed me. It implies passivity. Must I be patient while a doctor performs a procedure on me? Must I be patient while a doctor tells me, with assumed authority, that this is what’s wrong with me and this is what will cure me? I’ve been patient for many years now (my whole short life in fact), and I’ve come up to the edge of where the knowledge of institutionalized allopathic medicine can help me. Being patient or compliant is no longer paying off as it used to. I’m doing what they’re telling me to do and it’s not enough. And they don’t know why it’s not enough because their institutionalized knowledge is incomplete. So it is now time for me to withdraw the power that I have invested in the institution and reinvest it in a more worthy vessel: myself. The true healer.

This is called being empowered. It is beyond compliance. There is so much talk in the CF world about the importance of being compliant. Compliance is the state of the ideal patient – she does exactly what she’s told, and ideally no more. The word “compliance” has irked me since I was a kid, raised by my rebellious parents to question authority and to resist dogma. I now know why it irks me. It irks me because by being compliant I am giving my power away to my doctors. I leave the ability to heal in their hands. Being compliant leaves me with no power to heal myself. I have moved through many stages throughout my life: non-compliance (not doing all the treatments that I was told to, yet not taking responsibility for my health), compliance (doing everything I was told to, yet still vesting power in the institution and not taking responsibility for my health), and now empowerment (doing everything I am told to – within reason – yet keeping my power and being responsible for my own health). Being empowered does not mean going against the advice of your doctors and refusing to do your treatments or take your meds. Not at all. Being empowered means that you recognize your doctors’ advice as just that, advice. Most of the time their advice is really good and extremely helpful. I have great respect and gratitude for my doctors’ knowledge, intelligence, and their compassionate desire to help me heal. Again, if my parents and I had not taken the advice of my doctors’ over the years, I would have died a long time ago. But some of their advice is not very good, pretty harmful, or just not enough. An empowered patient listens to her intuition, listens to her body, and knows how to tell good advice from bad. When Western allopathic medicine (or the small subsection of it that we get at the CF clinic) fails to provide answers or solutions, there is no need to despair. Just look elsewhere, at the thousands of other medical systems and institutions of healing that have existed since human speciation, and also at the newest research within allopathic medicine that your doctors may not be aware of (e.g. intestinal microbiology). An empowered CFer looks beyond her doctors and their institutions and seeks answers in many places, all over the world, with an ever-expanding paradigm.

As an empowered CFer, I do more, much more, than my doctors tell me to do. I exercise everyday for at least an hour, usually two or three. I do all of my treatments as recommended and then some, combining the vest, acapella, and huffing together in a way that is most effective for me at reducing my mucus load. No one told me how to do that – I used my intuition to figure it out, but my doctors provided me with the tools. I never skip a treatment. Ever. I take all of my enzymes, supplements, antibiotics, and inhaled meds as intended. When I know something works and it makes a difference in my health, I do it. No excuses. It is sometimes hard for me to add a new thing to my routine when I am unsure that it actually helps. So sometimes I am “non-compliant” in that way, I must admit. I am trying to be better about that, and to give things a good trial run to see if they work before I refuse to do it anymore. But if I discover that it doesn’t work, I will stop doing it, even if it’s against the advice of my doctors. For I understand that it is only advice, and if I choose not to use it, that it my choice and my responsibility. If it was good advice and I chose not to use it, then I take full responsibility for the consequences. And hopefully I wizen up, expand my paradigm and become open to the possibility that the tool they just offered me may be useful.

As an empowered CFer, I also know when not to follow bad advice. There have been drug options that I have refused over the years and that I am very glad I did. I have refused to follow the mainstream CF nutritional advice for years, and am very glad I continue to do so. I also know when my doctors are at the limit of their knowledge base. There comes a time in every CFer’s life when the doctor does not know what to do. I have come to that point and have moved beyond it. I am doing extensive medical research and educating myself on my own behalf. I have a much more in-depth knowledge on a variety of medical topics, particularly nutrition, than my CF practitioners because my life depends on it. I don’t have the choice to be uninformed, when that ignorance could literally kill me. When my doctors can’t answer my questions, it is then time for me to answer them for myself. A few of my doctors respect the body of self-knowledge that I’ve developed and have allowed me to become a partner in the decision-making process, particularly on which antibiotics I use and when.

An empowered CFer knows herself better than anyone else does. Some CFers actually don’t know themselves that well because their awareness, insight, and intuition are stifled or limited somehow. This is a very common occurrence in our society of perpetually “tuned-out” people. I was “tuned-out” for years. So in these cases it is a good idea to shoot for compliance first. But once your insight and intuition becomes strong and you learn to trust it, then it is safe to say that no one knows you better than you do. Thus, no one knows what works best for you better than you do. And ideally, that self-knowledge is ever-expanding and ever-transforming. A good self-healer, just like a good doctor, is never dogmatic.  

So, what I am proposing here is a new nomenclature. I propose that we, the CF community, begin to use another term in describing a CFer’s involvement in her own treatment. I propose that we create a spectrum with (at least) three categories: non-compliant, compliant, and empowered. Let us also begin to honor those of us in the CF community who are not just compliant, but who are empowered and who can inspire other CFers to take their power back and take charge of their lives. Since becoming empowered, my life has transformed in innumerable ways, but most importantly, I am happier and stronger than ever. My life is now my own, and I take full responsibility for it. There are difficult challenges all the time, but I am the decision-maker and I trust in myself to find the right solution. I am powerful. I am a healer.

By healing ourselves we heal the organisms of which we are a part: our families, our communities, our societies, our environment, our species, and the planet. You are my community. Let us heal the world together.