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    • #13872
      Jenny Livingston

      “CF doesn’t define me.”
      “I won’t let CF hold me back.”
      “My disease isn’t who I am.”

      I’ve heard and read these statements more times than I could possibly count. In fact, I’ve said these things myself over and over throughout the years. When living with a chronic illness or disability, we like to believe that we have some degree of power over it – that we can still live life on our terms and refuse to succumb to the disease we’re fighting.

      Our society perpetuates the myth that allowing our disease to define us is inherently negative. We’re told that accepting limitations is the equivalent of giving up, and that allowing our illness to become part of our identity is a sign of weakness. In recent years, my thought process has changed a bit and I’ve begun actively rejecting these messages from society. I’ve reached a point where I’m at peace with CF being a defining piece of my identity, and I’ll tell you why…”

      Read the full post here: http://www.proteostasis.com/for-patients-families/community-column-jenny-livingston/cf-does-define-me-in-some-ways-and-thats-okay/

      “I’m a firm believer that our character is never tested in comfortable or easy moments; it’s the most difficult ones that reveal who we truly are. CF has presented some of the most trying, agonizing, defining moments in my life, and as cliché as it may sound, I’m truly grateful for the ways in which those experiences have shaped me. While it’s certainly not the only defining factor in my life, CF is undeniably part of who I am.”

      Do you embrace or reject the sentiment that CF can be a defining characteristic? What are your thoughts on this? 

    • #13907
      Paul met Debbie

      Does cf define a person?
      It is always better to be grateful for experiences than to resent them, no matter where the experiences seem to originate, i.e. from cf or another source.

      1. Nothing defines you
      That said, the core of the matter is that nothing that happens can ever define you. Happenings just are. They are the essence of what is called life. Life is what happens. You also happen. Even deep sleep is more the happening of absence, rather than the absence of happening. But that what happens comes and goes, that is the natural order. It is not supposed to get stuck somewhere. The essence of the universe is movement, change. It is you, who make happenings get stuck in yourselves, because you try to own them by either craving for them or rejecting them. And then it “gets to you”.
      The process of “defining” by which something that happens “gets to you”, always needs an intermediate. This intermediate is the “I, me, my” structure that exists in most humans. It’s the essence of what is called “the mind” (ego). The process that happens to us after birth (it seems to start at very early age, mostly before our 2nd birthday) is a process of identification. Basically it is the collecting of concepts, a sort of shopping around in the body, mind and world, and everything that is acquired (the body itself, thoughts, convictions, possessions) this way is put in a basket that is called “Me”. It is presented by our culture to the newly born (and later this one does it to itself) as “growing”, getting an identity, as something positive.

      But when looked at more clearly, it is not a process of growing but of diminishing. As soon as the young child becomes aware of the feeling “I am”, it means that an illusion of separation is created that puts everything the child was at birth (which is wholeness) outside of it, thus leaving it bereft of all except a hollow shell. And it starts the quest of regaining that what seems to be lost by forming relations with everything that happens that formerly felt to belong effortlessly as wholeness, but now demand action to get in touch with again. Of course, to form a relation with anything will not have the same intimacy as to Be it (like it was when there was still wholeness), so no matter what the individual does in later life, no matter how much he/she acquires (relations, love, possessions, knowledge, standing, “specialness”, influence etcetera), it never fulfills because it doesn’t compare to the natural state. Turning something that effortlessly and perfectly happens to nobody in particular into an “experience that happens to me” is a frustrating business and will never fulfill. You will end up with a basket full of dead stuff, no longer connected to the whole, that becomes heavier and heavier, and it will tell you that this is “what you are”, you will proudly say “this defines me – and that does not, or only partially”. And you will be wrong. Good luck with that.

      2. Don’t pick the flowers you already are
      This process of conceptualizing and identifying is like picking wild flowers. First you are in a meadow of beautiful wild flowers. You can see them, touch them, smell them. They are for free. They are gorgeous. It’s hard to tell where the flowers begin and you end, and vice versa. You are one with all of them and they are one with you. It is effortless union and complete. Then, your mind comes in. It says: “You know, actually, there is no union, no wholeness. You are something and the flowers are something else, you are separate from them. Don’t you see, here is you and there are the flowers. There is space in between. But I know the solution: just pick as many flowers as you can, put them in your basket. You will feel great. You can have them for you alone. You will aggrandize yourself, you will be `the one with all the flowers’, with the flowers you will be more and different than before and everybody will look at you”. So, out of habit and conditioning you believe and obey this thought and your troubles start. You have to pick the flowers, select the ones you think are best. You have to carry the flowers. Bring them home. Put them in a vase with water. Clean the water every day and still you will see the flowers wither. No longer connected to the whole, they dye. And that, what they represented in you, also dies. Short lived superficial happiness turns into a bad feeling and memory. Without your mind interfering, you could have had eternal joy.
      Sadly, the mind pulls this trick not only with flowers, but also with things like disease. It does it with everything that happens. And it will turn it into something much more heavy and problematic than it actually is. But once you get the mind going, it is out of control. As long as you believe in it.

      So in essence we are trying to re-define ourselves this way by a constant process of identification, driven by the longing for wholeness that started as we got separated from the whole when we were talked in this feeling of “Me”, that is completely illusory and nurtured by the mind.
      And the mind is not picky. It is pointed at filling the basket with no matter what. It can make us feel identified with anything that is experienced. And it can make that a good feeling (“I am clever and beautiful”) or a bad feeling (“I have this deadly disease called cf and I am not attractive”), or something in between (“I have cf but I am not defined by it, it is just a part of who I am”) – it just doesn’t care. It is only collecting stuff to make itself larger. Of course this does not work and essentially, it is an illusion. But for most people, it fills their time and life from the cradle to the grave. It is all in the mind and it is not real.

      3. Be Presence
      Once we call this scam of the mind for what it is, reality starts to shine again, no longer darkened by concepts like “I, me, mine” and all that got glued to this veil which covered up what was really happening underneath (all the time, without us noticing).
      Then there is just “What is”, or Presence. The body is silently ran by the brain (mostly beyond our knowing). All this happens. There is nothing that is not this. Nothing is other. And it is perfect, that is: complete. It is good nor bad. It does not need anything. And we are it. Not personally, not as something, someone or some concept in particular, but as the wholeness it is. You can be everything and nothing simultaneously and be totally free. The mind might be still muttering, but there is no one there to listen.

      4. Don’t pick your disease either
      How to experience this? By not trying to own anything, not identify with anything. As soon you identify, wholeness is lost. You seem to “have” this one “thing” singled out for you personally, but immediately the rest of wholeness is lost. That’s a real bad deal. Don’t.
      “Your” disease is a perfect start for this learning. It seems intimate, about you. But nothing is really about you. It just is. It is what happens in the body. Lots of things happen in the body, but nothing is personal. Start there. Don’t conceptualize. You don’t have cf. Cf is happening. And not even this, cf is an empty concept. Perhaps coughing is happening. Fatigue is happening. Fever is happening. Taking pills and doing exercises is happening, medical treatment is happening. Just like eating, drinking, sleeping, breathing, laughing, talking, enjoying are happening. All these functions are needed for your body to sustain, and they are equal and neutral. But none of them is about you. Don’t combine with it. Then you don’t have to call them good or bad. Everything comes and goes. Don’t make a thought out of it, don’t give it a name, don’t solidify it, because if you do, it sticks to you (it gets stuck in the basket) and you don’t want that. If they seem negative (“I have a bad day”), you suffer. If they seem positive (“I have a good day”), you want to hold on (and you will fail). It is not necessary. It does not make things different. Things are what they are. If you try to own them, you lose out. And remember, it is not really you who do this, it is only the mind which is an illusory function anyway.

      Learn to get out of your mind. Lose the basket and walk free.
      May grace be with you.

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