TED Conversations

Kathy Giusti

Founder and Chief Executive Officer, Multiple Myeloma Research Foundation

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What would you do if you were told that you had a fatal disease?

On January 12, 1996, I was diagnosed with multiple myeloma - an incurable blood cancer. The oncologist held my hand and looked me in the eye: "Kathy, it is 100% fatal. You have about 3 years. Get your life in order. Spend time with your family."

At age 37, I was the mother of a 1.5 year old daughter. I asked myself a tough question: despite knowing I was dying, what would make me happy? My goal became clear: to live long enough that my daughter would remember me.

The odds were against me. Myeloma had no awareness, research, or funding. The treatments offered in 1996 were the same as in 1956.

I had to start an organization dedicated to this disease to change the dismal statistics. My identical twin sister Karen and I founded the Multiple Myeloma Research Foundation (MMRF) to kick start research with the goal improving the outlook for patients like me

The work funded by the MMRF has dramatically changed the prognosis of a myeloma diagnosis. Five promising drugs have been approved by the FDA, the latest just in July 2012. Myeloma patients are living on average seven years and longer. There are eight more drugs in clinical trial, most of them tested through the clinical framework set up by the MMRF - including one that is under review by the FDA with the potential of being approved in the next 3 months. Mapping of the myeloma genome, funded by the MMRF, will likely lead to new breakthroughs and allow the right patients to be matched with the right drug at the right time.

Seventeen years on from my diagnosis, I have just sent my daughter, who I never expected to see start Kindergarten, off to college. The MMRF has achieved more than I could have ever imagined –doubling the lifespan of patients and changing the face of cancer research. But my story is still very much the exception, my mission and the MMRF’s mission is to make this the norm – to give other patients the chance to experience these life moments and ultimately to find a cure.

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    Nov 25 2012: I think you'll like this:
    The last Lecture by Randy Pausch http://www.youtube.com/watch?v=ji5_MqicxSo

    That's the long version. If you want the abridged version then : http://www.youtube.com/watch?v=ncoSRKoU6GQ

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    Nov 16 2012: well, then it wasn't really terminal for you, was it? I could say I'd go to Nevada, where prostitution is legal, and hire some prostitutes. But then sex with a prostitute seems kind of unfulfilling. Or eat a lot of Korean food, which I love. But then I wouldn't feel as good as I do on my current diet, which is somewhat different than Korean food. So maybe I'd just do exactly what I'm doing. You could say we all have a terminal illness, in fact we're all mortal, and we're all going to die. Hopefully we're all using our time as best we can.
  • Nov 13 2012: invite it in and watch for the lesson it is bringing ....after all

    the word "terminal" is an oxymoron because "that which changes is not real ...and what is Real does not change."
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    Gail . 50+

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    Nov 10 2012: I am dying of a terminal illness. All physical life ends in physical death.

    This being said, I am one of those who deliberately manifests my own reality. Because of this, I believe that no one dies without his/her consent. Most illness is belief based and it serves us when we are off course.

    Congrats on all you have done.
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      Nov 27 2012: Dear TED Lover, I have enjoyed reading your writings and find your perspective on many topics refreshing. Thank you for being here. I wish you would elaborate on "most illness serves us when we are off course."
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        Nov 27 2012: Thanks for your comment. I am not ignoring your request for elaboration about illnesses that serve us when we are off course. The question is important. My ability to articulate it in 2k characters or less is in doubt in my mind, so I must first manifest an answer. It is so closely related with choosing to die. I'm leaving your question in my in-box until I know how to answer it.
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        Gail . 50+

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        Nov 28 2012: OK. I'll try. It is easy enough to deliberately manifest your reality. It's how humans work & what we are supposed to be doing. To learn how (for free), simply go to YouTube and query create your own reality or manifest your own reality. This method works very well at manifesting "things" into your reality. Many find that it does not work well when handling more pressing issues - like health while ill or money while poverty-stricken. This is not because it doesn't work. It's because most YouTube instructionals miss the next step.

        Thoughts are things - literally. Beliefs are thought constructs. Your reality REFLECTS (literally) your beliefs about reality, not FACTS about reality. As you toy with manifesting things into your reality, your successes will prove this to you.

        So if when you are convinced, you work backwards and become AWARE of your beliefs, you can examine them. Our belief structures are filled with contradictory, outgrown, invalid, & untested beliefs. Contradictory beliefs cause you to work for & against self at the same time. Very self-defeating. Untested assumptions can lead you to unintentionally undermine yourself.

        When you become AWARE of your thoughts & emotions, you can begin to recognize your own belief structures. Some will be seen as obviously in error, but others will seem invisible because you are so comfortable with them. Don't let that deter you. Reality REFLECTS beliefs about reality. It doesn't portray facts about reality.

        example of contradictory beliefs: http://crookedtimber.org/2011/09/22/contradictory-beliefs/

        this leads to "emotions". Strong emotions portray mistakes in the belief system. They're a compass. Too many think that emotes are an end to themselves, but they're not. They're an invitation to resolve a mistaken belief. When this is accepted & utilized, one is ready to work on deeper issues as mentioned above.

        Meditation is helpful in connecting self with self.

        out of characters.. Helpful?
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          Nov 29 2012: That is a lot of food for thought and quite fascinating....What the heart knows the mind can only dream of ....and so emotions are a compass directing us towards what needs to be learned about ourselves.
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        Gail . 50+

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        Nov 29 2012: Re: How to test an assumpton:
        Let me start by using Dan Pink's (TED talk) explanation of what really motivates a person as one example - though not fully answering your question.


        A deeper answer:
        If you have a belief that you are unable to do something, and you have never tried doing it, your untested assumption may well be holding you back. Most people believe that humans are powerless beings. I have found that this is incorrect. I know that I am powerful. I do not know the extent of my power, but it is VAST.

        My most shocking revelation of a false, untested assumption came when I faced imminent death at the hand of a violent aggressor. Knowing that there was no way out (I certainly wasn't strong enough or big enough to escape), I decided to be "at peace" (not wanting to die terrified). At one point, I heard the words "turn the other cheek" in my thoughts. Because I chose to be "at peace", the words resonated, so I did when his fist gently moved my face from right to left rather than smashed my jaw as was his intent, I gave him my other cheek (in peace)..

        The attacker kept missing me and suddenly ran away. That's when I learned that inner-peace is incredibly powerful. (A similar situation occurred a decade earlier in the face of an attempted rape, but I didn't put the pieces of the puzzle together because I didn't yet know how powerful I am).

        I'm not suggesting that one put self in danger's path to test an assumption, but as you learn the extent of your power by practicing manifesting, more and more questions and opportunities will come to mind. As you sort through your beliefs, you will find those outgrown & contradictory beliefs. This will open your mind.

        what I meant about the next step comes from recognizing that it is impossible to create consequence B when you are working on creating consequence A. Fix the belief first, then that which you are having trouble manifesting will manifest.
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          Dec 1 2012: I agree that this life is about "putting our own pieces of the puzzle together"
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        Dec 2 2012: Juliette, I would like to suggest a couple of things.

        1) Meditation does not require any special poses. Just sit comfortably with spine relatively straight. Choose a chair that works best for you. Most sages say 20 mins. 2ce/day is powerful. Soon you will be able to slip into meditation for a few minutes here or there, and you will gain as much benefit.

        2) Manifesting for others while undermining yourself: Think about this. Your power is meant to benefit YOU. Bring to yourself all that you want. This is your right and purpose. BUT - when you manifest for others, you are actually assaulting the "reality" of others, and as you do to others, you do to yourself. Of course there will be unpleasant consequences.

        People's lives look like they do because of choices they have made. They make choices consistent with their belief systems. If you override a natural consequence of another's belief system, you deny them the ability to make their own adjustments in life. This naturally leaves them feeling confused, disempowered, and vulnerable to life. As much as you may want to help, or someone may want you to do their work for them, you do them harm when you do. And, as you have discovered, you do yourself harm.

        YOU are the light of YOUR world. Let your life shine so that it will be an inspiration, BUT DO NOT live your life in order to be an inspiration. Keep the focus on YOU. You are the light of YOUR world, not theirs.

        I know this sounds selfish, but think of it as SELF-ish. As the airline steward says before taking off: If you are traveling with children, put on your own oxygen mask before attempting to help the child with his/hers.

        There is much you can learn about yourself by teaching - if you pay attention to yourself. This is a fair & safe way to use your power with others. Every minute that you are in the presence of another, you are teaching / learning something.

        And remember: There are many who do not want to be saved from themselves
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        Dec 3 2012: I am sorry that I misunderstood. Perhaps you can explain.

        There is more, but 2k characters per post limits. If your intent it to use your power to heal others, you again begin with self. Heal self and share that healing of self with others. The other then has the opportunity to choose to keep the healing or not - as their belief systems will permit.

        Group healings work in the same way. All visualize themselves as the perfection that they/we are, and the power is amplified.

        Either way, it begins with filling your own pitcher first.

        Your exclamation marks tell me that I offended. Please understand that it was not my intent to do so.
  • Nov 27 2012: Wow some lady you are!! Your input and changes have changed this world for the much better!

    That being said, I have no qualms about death, it is very much a part of life. It is a transition from being conscious of the body to being conscious of the spirit. Like walking from one room to another. The afterlife is a reality to me, and I'd love to explore it and meet friends.

    When all of a sudden we lost our daughter I was glad for her, but very sad regarding ourselves because that was a great loss. In a couple of months she was supposed to get married too.

    Both thumps up!!
  • Nov 26 2012: This brings recall of a Talk Eckhart Tolle did in 2005 "The Art of Presence"

    the strange condition most humans are in .."They have to get sick to get better"
  • Nov 19 2012: I really commend on what you have done and how you well you have coped with having such an illness. As to your question, I would just commit suicide.
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      Nov 26 2012: Dear Rafshan, what if you got another opinion that would show the first one was wrong? or would find out that there is actually treatment that could save your life. If you stay positive and hang around you could be very pleasantly surprised. A lot of people are working hard everyday on finding cures. Not surprising is that these people lost a loved one to cancer. The idea is to join the team and work towards this goal before you lose a loved one. Meanwhile, trust in the greater force that gave you the miracle of life.
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    Nov 13 2012: I would prepare myself by meditating on God is good and loving. I would remain as happy and active as my illness permitted and most of all surrender.
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    Nov 13 2012: I'd say your motherhood and your family helped shape your decision on how to respond. Not having kids or an immediate family, but being a spiritual person, I'd focus on spiritual reflection and maybe writing for the sake of others' benefiting from my discovered spiritual treasures-- nothing puts one in touch with life so much as certain and imminent death...