I’m 30 years old, and I’m living with cystic fibrosis. I’m writing this blog to break down what I’ve learned in life in regards to living with a terminal condition. This learning is conjunction with all other kinds of learning I’ve had, in college, from books I’ve read, experiences, and talking with people in similar, and different, situations.
This is above and beyond the positive psychology findings of happiness. We are special cases, but I’d recommend looking into those as well.
- Desirable Difficulties
This is a term coined by Robert Bjork, and feel free to look into any of his ideas to the extent that you have interest. I put this first because this concept can be the core of my following ideas. The phrase desirable difficulties can be defined as the notion that being given a hardship in life will require learned traits to adapt, yet the strengths and adaptabilities acquired in this learning will put the person at an advantage that is greater than if they never had the hardship in the first place.
Statisticians and psychologists may tell you that dyslexia and a dead parent early in life are desirable difficulties by percentage whereas others such as obesity typically lend no benefits of adaptability.
I’m here to tell you statistics mean nothing to the individual, that perspective and more importantly choice makes a difficulty desirable. And if you who are reading this has an illness, you have a gift: you can become a stronger person than you could without it. Make that choice.
This is a term I coined. It’s German, and it is the emotion of joy felt by connecting with other people. It’s a unique emotion that is experienced when meeting inspiring, active, lovely, or otherwise awesome individuals. It’s the desire to know them, to be around them, to learn from them. It’s a powerful emotion, and I put it on my list because as you learn to be strong, a large source of this strength will come from what other people have become. They don’t have to be sick, in fact, many times they won’t be. And it may be easier to become jaded, jealous, or bitter when seeing someone with less difficulty accomplish something great, but activate your Menschfreude and receive the love they can give.
Of course this feeling is a two way street, and giving it to others is equally rewarding.
So, because you’re dying, or very sick, you will be sad. This sadness can be existential angst inevitably given to us by our mortality, or can be more tangible. How will those that love you feel when you are gone? What will your family do without you? Are there people depending on you? And what about all the things you want to do in life, that you never will have time to?
Read some old books, and you will see that humans have never had time to do all that they wished. That no one dies when they want to, and no one is really ever ready to die. With my background in biology, it is easy to have a scientific appreciation of death, and the new life that it brings, and that really, depends on it. But I have feelings, and so do you, and many times a strong one is grief. Accept it, celebrate it. Feeling melancholy is an immensely healthy way to deal with what every human ultimately knows. It is a way to avoid denial. It is a way to approach your death with dignity and wise reserve. It gives space to sort out other feelings that we have about our illnesses, and perhaps what to do about them. Don’t be scared of it.
Melancholy usually requires being alone. This is because our feelings are about our intrinsic state of being, and not the outside world. The outside world does not understand, and in our feel good age, it usually wants us to put on an indomitable smile despite our conditions.
Even if you are not prone to melancholy, learn to enjoy some degree of solitude. People do not like that you are sick, and they usually don’t want to hear about it. They have been conditioned by Hallmark and Hollywood that you will get better, not worse, and even if you aren’t, suffering is silent rather than selfish, scary, loud, smelly, and very much in your face.
Sometimes, you will need to scream, cry, rail, yell, and shout at the world. Find space to do that where they can’t hear you.
There are rare birds out there that will never leave you. That will always love you, that crave to be strength in your weakness. There is temptation to resist this. What if they do leave you someday, just when you’ve come to rely on them? What if you are hurting them just by being sick? Wouldn’t they be better off without you? What if you are just so damn strong that you don’t even feel a need for them?
Accept them anyway. Learn to lighten your burden a little for those who let you. Let them make their own decisions about what is good for them, and if you are worried about rejection or loss to such a strong degree, then think about your mortality. You are living life to the fullest remember? Part of that is love, friendships, family, mentors, teachers…human relationships make us happier and make our lives easier. They may not understand everything, but that’s okay. You don’t understand what it’s like on their end, which is scary in its own way. Be vulnerable, retire your heart’s sentries, and please, learn to accept companionship.
- Acceptance of Mortality
Someday, I will die. Someday you will, too. So will that strong person that is so healthy. We will all age and die, somehow. It’s really not a bad thing. Our culture likes to be forever young; a plausible deniability indeed until you have to face the music.
What is death? Again, I’m a scientist, and I have a certain understanding of it. But who the FUCK cares if I’m right about it? Believe whatever you wish, it isn’t hurting anyone. Be mindful not to let beliefs become a scapegoat to feed into denial or resistance however. Don’t let Heaven or Karma dissuade you from living life here on Earth, this time around.
Philosophize, talk to your friends about your impending doom, talk to your family and the older generation about how they feel about dying. Talk, talk talk. That’s the way to do it. Put on some Alphaville and Bob Dylan and be Forever Young….until you die.
- Life Meaning
I’m an activist. I work on a permaculture farm in Central Oregon, and I run an environmental non-profit. Why? Because I want to leave this world a little better than I found it. And the fiero I feel from knocking out a coal export terminal or installing solar panels is my life meaning. Part of fulfillment in work and life is knowing that the value of what we do is not only positive, but will carry on once we are gone. This is one of the most powerful emotions we can feel, not in its force, but in consequences. It’s why people have children, why people amass disgusting amounts of wealth, or go into politics. It’s what kills retirees. And it’s what will keep you alive in the meantime. Luckily, you most likely never have to retire (yes, there is a bright side of dying young, which I’ll get to in a second), and so spend your time doing something good for the world.
One morbid brightside to dying early is you really have nothing to lose.
People for some reason are scared to express themselves. To be weird, or explore something taboo, or simply cut loose. I really can’t shed much light as to why that is, but I can tell you why you should become a hedonist.
Many people think of hedonism as a blind seeking of self-indulgence, usually in the forms of drugs and partying, and it is often associated with irresponsible behavior. I could not disagree more. There is a high form of hedonism. Study your history of philosophy and you will see many forms of it in Dionysus, Tantra, Nichiren Buddhism, Romanticism, and others. Hedonism in my mind is seeking of enlightenment through pleasure. I don’t smoke, drink alcohol, or eat unhealthy foods. But I’m an epicurean, a former fashion model, an explorer of psychedelics, a world traveler, an all night sober partier, I indulge in emotional affection, and I have a lot of sex. None of these things are unhealthy, and no one is ever hurt in the process.
Explore the limits of pleasure and sensuality. It is more enlightening and intellectual than you may imagine. Hedonism brings about empathy, self-understanding, and a balanced sense of responsibility of self. This responsibility requires discipline; abstinence is all too easy.
You are given a gift. You are given a perspective that everyone needs and everyone avoids. You are confronted not with something unfair, but reality. This perspective requires you to lead a better life. Failure is not an option. You must love life, you must learn how, or you will not survive. It comes with a cost, it will be harder, but you will succeed and when you do you will succeed in a more meaningful and tangible way than the vast majority of humans on this planet.
Be fucking grateful that you are sick. It’s the best thing that has ever happened to you.
- Domination and Personal Growth
Many people will talk about winning or losing their battles with illness. I throw that out with the trash. Dominate your life’s condition by forming it. Channel it. This cute little list may be a good first step, or add an interesting tidbit to your own path, but ultimately, I cannot tell exactly how to do any of it. You are a flawed person, but that’s good too. It lends room for personal growth, and you will have to embrace your need for it. You will need to be more mature, more empathetic, more compassionate, more intelligent, more knowledgeable, more physically in shape, more charismatic, more adaptable, more self-reflective, and more honest than your peers to do what they do. Think back to desirable difficulties. This personal growth will make you a better person than you could be without your sickness.
Sometimes you will stumble, sometimes you will fall…if you’re anything like me you’ll faceplant quite a bit. That’s great! Resiliency is key!
You’ve got only one life. You owe yourself as much personal growth as you can get.
I know this list has been long, but I hope it helped. I love you all! -Lief