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.
Our culture (Western Euro-Americanism) is obsessed with violence. Violence is at the heart of the mythological traditions that we have inherited from the pastoral-nomadic peoples of the Levant several thousand years ago. Joseph Campbell, a famous mythologist whom I deeply admire, describes how the environment and time period that these people came from shaped their paradigm, their collective imaginings of the world. This mythological tradition is out of place in the modern world. It does not fit our situations or environments today, and it certainly does not fit the challenge of living with chronic illness. I am challenging that old violence-obsessed paradigm and am offering up a new set of metaphors and concepts for thinking about disease that aims at actually helping a person not just survive hardship, but thrive in the context of this challenge; mentally, physically, and spiritually. The metaphors that I present don’t just apply to the life-challenge of having CF or to disease in general. They apply to anyone facing any challenges that they experience in their life; anyone experiencing hardship (which is, in fact, everyone).
I have been a drummer for most of my life. I go to a Afro-Caribbean drum and dance group every week and drum the traditional songs of Haiti and Cuba with several other drummers while a group of dancers dance to our rhythms (and often sing too). Often I lose myself in the rhythms, my mind suspended in the spaces between beats, or hovering just above the head as the overtones of the drums hum to one another. It is a meditation.
The first title of this article has been on my mind for almost a year now, ever since I started this website. It is a topic I think about often, but is so difficult to communicate it in a way that is understandable to the Western mind. But in drum class today, a metaphor was presented to me, in my meditation. The drum. Disease is not a battle. Disease is striking a drum.
What does that mean? A drum is played by applying force via the hand or a stick to an animal hide head wrapped around one end of a hollowed out wooden barrel. To witness the striking of a drum in isolation, one may choose to see it as an act of violence. Yet when we zoom out and view it in its larger context, a series of strikes creates a rhythm, and when played with other drummers, songs of beauty and power are created. There is nothing more fundamentally human than the urge to sing, dance, and drum. We have been doing it for millions of years. It has been argued that we learned how to make music long before we learned how to speak. As long as we have been drumming, we have been confronted with the complex physical, emotional, and spiritual challenges of being human.
Although striking a drum may be seen as violent (from a certain perspective), the act itself is less important than the intention behind the movement. In drumming, the intent is to make music to commune with other humans and to elicit that strange sense of euphoria that can arise when in the presence of a reverberating drum. The intent, to put it simply, is positive. The intent is to build synchronicity, unity, and community. The intent is communion.
And so there can be great value in viewing disease as striking a drum instead of fighting a battle. My disease is genetic. To fight a genetic disease is the most futile act I can think of. I would be fighting myself. My own DNA. Trying to destroy myself. How can I love myself if I am constantly being violent towards my body? There is no such thing as "cystic fibrosis" - it does not exist objectively, as an entity independent of myself or anyone who has CF. It is us. We are it. Without us, it would not exist. We create it. Not intentionally, of course, but it matters less how it came to be than how we choose to react to it. Every person's way of manifesting cystic fibrosis is completely different - no two diseases are alike - and so we all have very unique things to learn from it.
We may choose to see striking the drum as an act of violence. Likewise, we may choose to see the challenge of living with CF as a battle. But I do not choose to see it that way. That way is negative. That way, I am sure to lose the battle. Instead, I see this challenge as a playing of my own rhythm, and in doing so, I will find others who choose to play their own rhythms. Then we will find that our rhythms can synchronize. And now we are playing music. Now we are creating joy that others may choose to dance to. The songs that we play are manifestations of the wisdom that we have learned as we live through hardship, and that wisdom is passed down from generation to generation, inspiring people for ages to come to live in beauty and to see the world as one complex song played by many drummers.
Killing and Healing
Although I choose not to see the challenge of CF as a battle, there is no denying that I am forced to kill many beings in order to survive – bacteria, fungi, and viruses that live in my lungs and sinuses. I use antibiotics (and now essential oils) to kill the pathogens that are making me sick. The word "antibiotic" literally means "against life". How can I still kill pathogens so that I may survive while still refusing to engage in violence or the concept of a battle? Well, for one thing, the pathogens are not setting up shop in me with the intent to kill me, so they are not my enemy. They are simply beings that have found a home that is a favorable to their particular needs, and that home happens to be my lungs. They are not engaging in violence when they kill my lung tissue (at least, I imagine they are not able to conceptualize violence). They are simply living out their tiny little lives in microbial bliss, ignorant of the greater world of which they are a part. Why blame them when they have no idea what they are doing to me? So yes, I must kill them if I am to survive, but I have no enmity towards them. If I must kill them, I do it with either compassion for their ignorance (on a good day) or indifference and non-attachment (on a normal day). Death is not a negative thing, though Western cultures often choose to see it that way. It can be a beautiful and transformative process that makes space for new growth and new opportunities. I view my own death in such terms, so to be fair I must view the death of my friends, the microbes, in the same way. Our immune systems engage in killing potentially harmful beings everyday. Yet in the process of killing these pathogens, the immune system chops them up into small pieces so that those materials can be reused to make new molecules or cells that the body can use to heal itself: adding protein fibers to muscle, lipids to hormone molecules, or using glucose for energy production. What a beautiful example of the transformative power of death into new life.
Furthermore, healing is not just about removing harmful influences like pathogens. It is about building the health and resilience of the "terrain" - the ability for the body to protect and heal itself. This is a huge part of a successful healing regime, and without it success is not as likely. Yet Western medicine rarely pays attention to the strengthening of the internal terrain. Germ Theory has too strong a hold on the way we conceptualize disease, and so in ignorance of the idea of building a healthy terrain we make ourselves vulnerable to re-infection. Strengthening the terrain protects us from harmful external influences, and yet it is a very positive process. It brings balance and resilience to a system. This is done by strengthening the body's immune system with proper nutrition, adequate exercise, and the use of medicinal foods and herbs. Recognizing our place in the natural world and the value of plant-human interactions is a crucial part of the healing process. Certain herbs can influence our epigenetic expressions, like the way curcumin (from turmeric root) and genistein (from soybeans) can help modulate CFTR function to allow the body to more effectively regulate its immune responses to pathogens. The new CFTR-correcting Vertex drugs effectively do the same thing. Maybe Western medicine is catching on after all.
From Victimhood to Mastery
Using the “disease as a battle” metaphor essentially guarantees that I will fail; I will lose that battle. But using this metaphor also leads us to engage in something arguably worse than losing: victimhood. In a battle there are pre-ordained roles to be played: the perpetrator, the victim, and the redeemer. In Western medicine, the disease is seen as the perpetrator, the patient is seen as the victim, and the doctor is seen as the redeemer. The disease is conceptualized as preying upon, with maleficence, some unsuspecting, innocent, helpless person seemingly at random. Yet such a simplistic metaphor rarely fits the complexities of human life: sometimes the redeemer is the perpetrator; sometimes the victim is the redeemer; sometimes the victim is the perpetrator; and sometimes the perpetrator is totally unknown. In our culture, blame and responsibility is shifted away from the victim, and with it her power to transform the situation to promote healing. By engaging in victimhood, the person has given her power away either to the perpetrator, to some perceived authority, or to the redeemer. But the only true healing is self-healing, and so by shifting responsibility for both the cause (i.e. the disease, the hardship, etc.) and the healing to someone or something else, she has locked herself to a state of perpetual victimhood, a place where no healing can take place. But by retaining one’s responsibility (not necessarily for the cause, but for the reaction to the cause), one retains the power to transform the situation into something positive and creative. By keeping her power, she embodies all three of these battle-roles, and none of them. The metaphor is no longer useful to her so she transcends it. She sees the challenge not as a battle, but as an opportunity to learn and grow wiser. She has become a master.
A master retains her own power to defend and heal herself. Though she is constantly engaging those challenges that meet her, she doesn’t see this as a battle. She sees it as a dance, a song to which she drums. I have had the privilege of knowing several masters in my life. They are rare these days, as our society neither values them nor recognizes them. One is a grandmaster of a kung fu school. Another is a surfboard shaper. Another is an acupuncturist. Another is my drum teacher who holds the class that I described before. None of them are wealthy or particularly famous, yet all of them are well-respected (even a little revered), all of them are incredibly skilled at what they do, all of them are wise, and all of them are happy. They exemplify Joseph Campbell’s motto for true success: “Follow your bliss”. I’ve noticed that these masters have several other things in common: 1) they take great joy in their vocations and in life in general, 2) they have good senses of humor and never take themselves too seriously, 3) they never view their responsibilities as burdens, and 4) they are constantly seeking out new opportunities for learning. All of them have had their fair share of challenges and hardships, and yet they have chosen to use the energy of the challenge and transmute it into wisdom that can be shared for the betterment of society and the enrichment of humanity.
Opportunities to Learn
Every single person who has ever lived has had their fair share of challenges. The magnitude of a challenge cannot be measured objectively; it can only be measured by the relative amount of suffering and/or wisdom that a person creates in reaction to it. Notice that I made the distinction that the challenge itself does not create the suffering nor the wisdom – only one’s reaction to it yields such boons. Two people can experience almost exactly the same challenge and yet have completely different reactions to it; one can experience more suffering than the other based upon how she conceptualizes the challenge. I offer that having cystic fibrosis does not guarantee any level of suffering at all. What determines one’s level of suffering is how one chooses to react to the challenge of having CF.
Over the years I have experimented with different ways of viewing my CF. I briefly tinkered with the idea that I was given CF as a punishment by a supernatural power for something I did wrong in some other life. That didn’t seem to be a very useful idea, so my next thought experiment was that CF is such a great burden that I must now be enlightened enough to handle this challenge, having passed the smaller tests of the lesser challenges. That was wicked egotistical, and eventually I learned that even if having CF is a big challenge, there are many challenges that other people face that I am still afraid of. So I let that one go. The idea that I am using now is that CF was given to me as an opportunity to learn and become a deeper, wiser, more compassionate human being. Having CF has taught me so much about the multifaceted experience of this complicated human consciousness. Through CF I have experienced more of humanity than I could ever have if I was “healthy”. It has given me such motivation to go out and experience the world; to live every moment of my life to the fullest. Because who knows how many more moments I have left? Nobody ever knows that, but it is clearer to me than it is to many people because my mortality is sitting there, right in front of my face, staring at me. Confront me, it says. Confront me and you shall be released from fear. And so I have. And so I will.
For the most part, having CF no longer causes me much suffering. And by suffering I mean negative emotional reactions to the challenges that come my way. Sure, I feel pain. Sure, sometimes I feel scared at the prospect that my lung functions will slowly decline until I die. I am not one to stick my head in the sand. But most of the time I choose not to allow that to make me sad or angry. Those emotions are a choice. I would rather choose to feel happy that I have learned so much in such a short amount of time. I would rather feel grateful that having CF has caused me to meet so many amazing people who wish to share their love and wisdom with me. In this way, CF is a gift. And it is not just a gift for me. It is a gift for everyone I come into contact with. Often people say that they are inspired by the way I live my life or by the way that I think. My family and my friends all have something to learn from this. And they teach me via their own life challenges, too! I would like to think of this life as an opportunity to become both a voracious student and a compassionate teacher. Both an apprentice and a master.
No life is free from hardship. If we didn’t have CF we’d have something else to challenge us. It’s not useful to imagine ourselves as being deprived of a perfect life free from worry and strife. No such life ever existed nor will it ever. Let us instead be ever more increasingly grateful for what we do have.
I’ll end with a quote from The Power of Myth by Joseph Campbell:
“There is an important idea in Nietzsche, of Amor fati, the ‘love of your fate,’ which is in fact your life… the more challenging or threatening the situation or context to be assimilated and affirmed, the greater the stature of the person who can achieve it. The demon that you can swallow gives you its power, and the greater life’s pain, the greater life’s reply.… The problem is not to blame or explain but to handle the life that arises…. The best advice is to take it all as if it had been of your intention – with that, you evoke the participation of your will.”