Linda Noble Topf presents You Are Not Your Illness
Most of us live as though what we do now will continue forever. Life, however, seems to be full of little tricks. Often we are completely bowled over by untimely interruptions provided by injury or illness to our expected life. We can never learn enough about how to live fully no matter what our life’s path presents to us. Linda Noble Topf who has lived with multiple sclerosis came to the Bodhi Tree in September 1995 to tell us about what she has discovered through her illness and how that intelligence can empower all of us to live fully and deeply no matter how the fickle finger of fate may disrupt our plans. Her book is not a “how-to” book but a message of hope and inspiration. Linda Noble Topf is a unique teacher with a special message to benefit all of us, both able bodied and not. What follows is edited version of her Bodhi Tree Bookstore presentation. At the end of the presentation, there is a short biography of Linda Noble Topf.
For additional information about Linda Noble Topf and her work, see www.lindanobletopf.com
Linda Nobel Topf: Welcome everybody. Thanks for being here. I want to ask what brought you here on a gorgeous Sunday afternoon?
Audience: I have been dealing with chronic fatigue and illness for a long time and working with it. I don’t understand if my failure is my fault or my bodys. Am I doing something wrong?
Linda Nobel Topf: Anybody else?
Audience: I’ve been diagnosed with major depression but I don’t really buy that label. Somebody said something about doing it wrong and creating your own illness, like new age guilt. I’m on social security and I am just fighting it all the way. I’m not strong enough to have a job. I am what I am and how do I reach out and accept myself without feeling guilty about what I’m at. And I’m so paranoid that it’s in my mind.
Linda Noble Topf: Thank you. We are all dealing with the same thing. We are concerned with depression, chronic fatigue, MS, and guilt that you may have done something to deserve your illness. Who are we if we’re not our aches and pains, our complaints and judgments, and our anger and guilt. Who are we?
I don’t have the answer. I have a process that I went through, that I’m still going through. It’s a never ending process for me. But what I’ve discovered are the tools to empower and uplift me rather than collapse me into judgments or unreal expectations.
In my book [page 222], it says, “it takes great courage to accept love and forgive the parts of us that are stubborn to change and to choose a new direction that it’s the oneness or our purpose, that serves the greater good.” Each time we consciously choose to do this, to grow ourselves up, to expand to wake up, we are claiming another lost asset of ourselves. What this book attempts to do is to wake up those lost aspects of ourselves that have long since been asleep.
You’re Not Your Illness is designed to inspire us and point us back to ourselves through seven spiritual principles that we all know. We know them as honesty, acceptance, observation, compassion, cooperation and faith. But when we slap an illness or injury on it, what happens to our compassion and to our love for ourselves? Then we have to dig for it or take medication or we have to reach out to somebody. When we get ill or have and injury, where do we go? Where do we go for guidance? We go to our husbands, wives, parents, friends and doctors. But you also have to go to yourself.
William James says, “be willing to have it, so acceptance of what has happened to us is the first step to overcoming the consequence of any misfortune.”
I look at acceptance more like the second step. I see honesty being the first step. It’s my experience that honesty has been the step right before acceptance because acceptance is kind of like, without really being honest with what you’re dealing with, maybe I will walk, maybe I won’t walk, I don’t know. Acceptance is kind of like a band-aid, now how do we deal with it.
It’s been my experience that applying these principles for meeting the challenge of feeling and renewal, we begin to look at the possibility of viewing what we have and looking at life from a different, more compassionate perspective. I know how to be critical and punish myself but that’s the lower path. I don’t choose to do that anymore. What this book will show you is a blueprint for finding the meaning in life’s challenges.
Life’s challenges could be injury, it could be getting older, it could be having a common cold, it could be surviving cancer. What’s the point here? What’s the meaning here? What is my life about? I want to learn practical yet spiritual approaches and how to deal with life and how to live successfully with and illness, not just coping, until there’s a cure, then I can live. What are we doing right now? How can we empower ourselves to live right now, present time and live our lives fully and wholly and completely from a spiritual perspective.
This book makes a powerful point that real feelings have very little to do with the body. It is about loving and accepting yourself the way it is, the way you are. And it has very little to do with your state of self esteem. Difficult feeling has nothing to do with whether I’m sitting, standing, running, or marathon dancing. This book is about loving compassion and how to develop and empower it and how to bring that forward when we have an illness given to us.
Here’s another quote from the book. It says, “There’s no good arguing with the inevitable, the only argument available with an east wind is to put on your overcoat.” That’s from my husband James Noble.
And now I want to hear a little bit from you. How have you developed the skills to empower yourself and deal with your life? How do you enter into the real challenge of how to live an empowered life? How do you have a life filled with self-acceptance, compassion, forgiveness and dignity.
Audience: How do you deal with compliancy now that I have and illness and I have to live with it? So what I guess I’m saying is that you don’t want to get to the point where, or do you, where you love your illness or your poor health or whatever?
Linda Noble Topf: I want to know how you empower yourself because of it, not in spite of it. How do you strengthen your character because of it? I think it’s maybe breathing and finding out what’s in your heart and living from the heart. I read an article recently about Timothy Leary. Timothy Leary is dying of prostrate cancer . And this article said the news thrilled him. He’s thrilled that he’s dying. He said, “how I live is not the most important thing I can ever do.” He said, “how I die is even more important”. He said, “it’s the exit, the final scene of the glorious epic of my life”. He said, “now I can start empowering my life.”
Here’s a guy who’s in his late 70’s and he’s still stating life now as he’s dying and he’s not being complacent about accepting it but now he can strengthen himself to do the most important thing in the ending and the dying of his life.
My definition of honesty means letting go of illusion and pretense and judgment an having the courage to face life exactly as it is right now, whether it’s chronic fatigue, no money, injury of MS.
What about you? What do you look at as honesty? How do you look at that in relationship to what brought you here?
Audience: For months I could not handle work, it was terrifying. I go suicidal. I can’t walk up to anybody and have an intimate relationship. To me that’s a disability. If I want to be honest, I’d say that makes me angry. Is it my fault because I’m not mature enough to handle a relationship.
Linda Noble Topf: I hear an illusion or a mask called honesty. I hear self-judgment and self-judgment is more of the illness than what you call the disability. That’s what I hear. But I’m glad your are here because by being here you’ve put yourself on the line to start the process of unveiling what is actually there. You’re starting a process that could end in acceptance, that could move on to compassion for yourself. So I congratulate you in being here because that’s the first step.
So what is honesty? Other than letting go of illusions and pretenses.
Audience: You’re making excuses, basically to yourself.
Linda Noble Topf: To yourself and to others. It’s not easy to accept life as it is. It is terribly difficult. The honesty is also about accepting the dark side of me, the part that I don’t want to look at. It’s how we are in the moment and that’s not always pretty. It’s terrifying. It’s scary. And that’s when we stat bringing forth the compassion and loving for ourselves. When we have an illness, an injury, or a relationship that didn’t work out, where do we bring forward, yank forward or pull out our loving, nurturing and compassion.
I just got back from visiting the Mideast. I never thought that I would do the whole thing in a wheel chair, that was not originally my picture. I was going to sail on the Nile and I was going to go with the group and walk and get scarves and wrap scarves around me and do this trip gracefully. In order to do this thing, I had to be ruthlessly honest with myself, that no, I can’t do it that way. I needed to have five Egyptians lift my wheelchair so that I could go over the sand and cobblestones but the honest part of it was to love myself and accept myself for greater than what it looked like. And letting go of what will they think or say. Not only am I being helped, but sometimes three people had to help me to the bathroom because I can’t stand.
That kind of honesty is what I’m talking about, to move into the loving and the compassion. And the trip was wonderful, only because I let go of the illusions of how I thought it might be or should or could have been if I was standing. But I can’t stand. So rather than sacrifice the trip, I embraced the honesty and started to move into acceptance. That what this book is about. That’s what the principles are about, uncovering “your are not your illness” or “we are not out bodies.” How do we know these skills, how do we learn these skills? How do we even know where to go to find these skills and develop them.
Bernie Siegal, in his wonderful wisdom, said to me, “Linda, I don’t know, I know patients who know, but I don’t know. I don’t have the answer.” We patients do. I think that people who have illness, especially AIDS, MS and depression are the ones who might be the people to lead the way. Because we’ve been given a special privilege to see truth, to be honest about it and be honest about ourselves, to see how we can live life from a perspective that is not based on illusions or the way it should or could have been. I’ve spoken to so may people with Parkinson’s or breast cancer. It’s like they never saw life as clear as they do now. Rather than see yourself as a failure, to see yourself engaged fully in life and building on that rather than comparing yourself to another or a previous self. I used to do it that way. We all have done it that way. This could be the turning point, you don’t have to do it that way anymore. We’ve done that. It’s time now to lift up.
So, what else is honesty?
It takes a tremendous amount of courage to deal with what we’re dealing with. It doesn’t matter what the thing is, it takes a tremendous amount of courage because we always have to keep our focus on the loving, our focus on the gifts of the human spirit, the gifts of the heart. And no matter what we’re doing, we just have to find out where that is. And to keep polishing it. As you walk out on the street and you will find the testing ground all the time. And say, oh find your heart, nah, prove it, find it again, nah, we’re going to cut that off. We’re just going to keep testing you or throw some mud on it. But it’s up to us to keep strengthening it and finding out. That’s what our challenge is. You just take it the next moment, the next moment, the next moment. We all do it. We’ve all done it. It’s one moment at a time. It’s a rededication to the quality of our life, one moment at a time. In that, you might find a new power of freedom and clarity. And then you can start using that as building blocks to move onto acceptance.
In the book I work through a number of processes such as it’s okay to fear, have anger and to grieve. It’s okay to really challenge those beliefs, to start striping away to the reality and the core of who we are if we’re not our illness. Who am I with this, when I was walking with a cane and then with crutches and then a wheelchair and then with a scooter. I’m healthier now than I’ve ever been in my life and I’m on a scooter.
I see that in my life I can choose to experience inner peace, regardless of the state of my body or my emotions. Where the healing occurs is in the soul and in the spirit. Another quote from the book is, “Learn to wish that everything should come to pass exactly as it does.” That was written by the Greek philosopher, Epictetus.
Audience: You have a mind that functions and your body doesn’t, where I have a body but my mind doesn’t function. That’s how I see myself. I’m stuck in my head. I’m afraid to think about having a relationship because what if it doesn’t happen and what if I can’t have a relationship with a person who can understand me? Maybe she won’t accept me because I don’t accept myself.
Linda Noble Topf: It gets really complicated. What breaks apart is the loving and the forgiveness of yourself for the judgments not for the actions or the fact that you think that you’re not worthy to have this relationship. Loving yourself, will start you learning how to forgive yourself for the judgment, not for the behavior. What you’re judging about yourself is more of an illness than what you are describing.
You could go into the dark side first. I have a whole analogy in the book about beauty and the beast. The beast is all about anger, grief, illness judgment, and regret. All the dark things. Beauty is light, joy, spirit, health, vitality and goodness. But beauty was not whole until she kissed the beast and accepted that part in herself and then he turns into a prince. In accepting the dark side, she owns that part of herself.
Question: Your talk about love about what about whoever did not love me for not loving myself, such as parents?
Linda Noble Topf: I forgive myself for judging myself for not receiving love in my life. I forgive my parents. I forgive my father for not loving me even though I had an illness. I forgive myself for judging myself. I forgive myself for judging my parents. There’s power and healing in that. To regurgitate your history, you’ll do that lifetime after lifetime. You’ll go nuts.
I’m saying that we are not our limitations, we are not our illness, we are much more than the limitations or the labels that are placed upon us. We’re much more than that.
My book is abut inspiration, not more information of what to do, or brown rice, or how to cook a certain way. It will inspire you. Once you’re inspired you are empowered and you will then move to action. How do you live in spite of your sickness, because of your sickness? Does your life stop because of the label? We will all die. It depends on the quantity of your life while we’re here until we die. Which game do you want to play? Me. I want to learn how to live the quality and most empowering way to live. In the meantime I’ve got MS so what. Big Deal. So I don’t walk, big deal. But I will go to Egypt in a wheelchair.
Question: Do you claim you’re not your body? Your body’s part of you, right?
Linda Noble Topf: Sure. But I’m bigger than my body. If I was just my body I wouldn’t do half the things that I do. I loved and embraced my body but it does not define me. It does not limit me as to my purpose and my meaning of why I’m here. That what my heart does. That’s what my loving does an that’s the direction where I’ve learned the process of how to get the compassion and to the human spirit that’s my heart, that’s more than body, legs, depression, or chronic illness.
Question: What do you do now?
Linda Noble Topf: I’m still an artist. But I don’t draw anymore because I can’t hold a pen. I am accepting life how it is, not using it against myself., of how I once was. I’m very creative. My mind is not dead or limited.
To me acceptance is the ability to open ourselves up to what is. It might be asking for assistance, which makes it possible for us to claim the current reality, not the past or the future or the one that exists in our mind. How you do it, that’s our journey. What I can say is that acceptance also brings a higher quality of life because now we’re talking about engaging in a life which is not based on the past or the ‘shoulds’! It’s engaging in the quality of the current reality of how it is right now. It’s being honest, working with acceptance and then moving towards unconditional compassion for ourselves.
That’s the healing process. There are seven principles to it. It’s not easy to keep remembering to go higher rather than to think back into the lower habitual ways of being negative, angry or sad. We used to do that. We don’t have to do that anymore if we keep choosing the higher path rather than the lower path.
And acceptance takes practice. It not like I could accept and now I can’t. It’s a constant, constant thing and it’s all choice. We can choose the dark side or the light side. We can choose to go up or go down. We can choose upliftment or collapse. It’s your own choice.
Walter Cronkite used to end his everyday newscasts with the words, “and that’s the way it is.” And that is the way it is.
Honesty and acceptance are the first two principles in my book. I encourage yo0u to work it out and be honest with yourself about it. And honesty is not simple, it’s painful. I won’t say that it’s not. However, we’ve got to go through this process so that we can move to the other side. On the other side is joy and compassion for ourselves and love for ourselves and others.
Thank you all for being here. And what I appreciate most, is not only that you’re here, but I appreciate that you’re all willing to look at ourselves, to start opening up to see where this path called illness or injury can take you. Because it is a never ending journey.
I can never go back to where I was when I was walking. I would never give up the lessons and the loving and learning that I have found for myself. I don’t know where your lessons are, but look to your heart and you will find them. I thank you all so much.
Short Biography of Linda Noble Topf:
Linda Noble Topf is a graduate of Moore College of Art and Design, after which she became a successful and well-recognized graphic designer. In 1978, Linda Noble Topf founded an award-winning image development, design and marketing company. She was one of the creative forces behind Philadelphia's highly acclaimed 300th Birthday Celebration (the historic "Century 4" project), and was one of the founding members of the Business Women's Network in Philadelphia.
In 1981, at the height of her business success and in the middle of planning Philly's 300th Birthday celebration, Linda Noble Topf was blindsided by the diagnosis of Multiple Sclerosis, even though she still had complete mobility and function of both arms and legs. Linda had a natural inclination toward growth. Rather than forcing transformation to happen because of her physical challenges, she created ideal conditions for natural transformation to thrive. Linda Noble Topf identified key qualities she could focus on and cultivate within herself, distinguishing which qualities were essential for her to bring forth this new transformational, creative experience of self-expression.
Linda Noble Topf is the author of You Are Not your Illness which focuses on the person who is living with the illness: the emotional, physical, intellectual, and spiritual transformations; what can be learned; and ultimately how to forgive oneself for self judgments. Consequently, unconditional acceptance, empathy, and inner peace are created for them and for others. Through the power of applying the spiritual principles of acceptance, forgiveness, and choosing to live in the moment, we become aware that living successfully with an illness is really the journey of a spiritual awakening that can help us generate and build a richer, fuller life.
In 1984, Linda Noble Topf pioneered The MS Initiative, an innovative project that inspired MS patients and their families to ask questions and explore alternative treatments and develop resources (and peer support) to maintain positive attitudes. The MS Initiative expanded to nine states, and was in existence for five years.
Linda Noble Topf's counseling work with others inspired her to the next spiritual step-becoming an ordained minister in an ecumenical church. She returned to school and in 1992, and obtained her Masters in Spiritual Psychology from the University of Santa Monica.
As an advocate for disability rights, Linda Noble Topf is a professional speaker, contributing editor and author dedicated to assisting others in seeing that illness, injury, or any kind of adversity in any stage of life, can be viewed as a spiritual awakening, an opportunity for personal growth, and connection to the consciousness of who we all are.
For additional information about Linda Noble Topf and her work, see www.lindanobletopf.com
You Are Not Your Illness: Seven Principles for Meeting the Challenge by Linda Noble Topf with Hal Zina Bennett, Ph.D. (253 pp.)
While serious illness, injury, or disability can physically alter the course of your life, it can also cause great emotional upheaval. It is not uncommon to feel anger, frustration, grief, fear, and denial as you try to accept a new way of living. As you lose your ability to do things you once considered routine, you may feel that you are losing your self-worth, that your physical condition is threatening your identity. In this book, Linda Noble Topf, who has lived with multiple sclerosis for most of her adult life, delves deeply into her own experiences to share with you the keys to regaining emotional and spiritual wholeness. This is not a how-to-book but a book to provide inspiration to face what is often the unfaceable, an illness or injury which completely changes our physical being. It is glowing testimony to “miracles in action” and provides a valuable teaching on the quality of your inner life no matter what our life’s path may be.
“What lies behind us and what lies before us are small matters compared to what lies within us.”
–Ralph Waldo Emerson, quoted in the book.