A final speech: “Growing Through the Narrow Spots with Resilience”

As you may have read in previous posts, I have decided to surrender my speaking career. In light of that decision, I decided to share with you – my much-appreciated subscribers – the text of my last speech. It was given virtually in January at The Leukemia & Lymphoma Society 2021 Florida Blood Cancer Conference. It was accompanied by a series of slides – which I will share upon request. Please keep in mind the audience for this text is cancer-related. However, I want to remind you that life is full of narrow spots – not all identified as “cancer”, they indicate change. Enjoy! I hope you read the following as often as you need the reminder that life is worth living – everyday, no matter what.

Take three deep breaths and center into these next moments.

If you have one, overturn your hourglass.

Let’s begin.

Hands – or hand, as the case may be – tell a lot about a person. Take a look at yours. Human hands are the original and ultimate tool. Before AT&T – and Covid-19 – they were the way we used to reach out and touch someone. The world is ever at hand, within our grasp. People are handy, they can lend a hand. Some things are so easy, we can do them with one hand tied behind our back. We fold our hands in prayer. I read once that angels will read your life story on your hands. I am confident they will get my whole story. Take a look at your hands again. What story will they tell?  

At the end of each finger are your fingerprints. They are completely unique, like each of us, like the life journey on which we travel. I have found that it is a mistake and even counterproductive, to compare one person’s journey with another’s – all are different and worthy, and one is not more important or profound than another. As part of my preparation for today, I attended the virtual LLS National Blood Cancer Conference in September. It confirmed my acute awareness that your experiences have been dramatically different from mine. And yet, we are all part of that club which no one is eager to join – we are cancer survivors.

I subscribe to the National Cancer Institute definition of survivorship. “A cancer survivor is one who is living with, through, and beyond cancer.” The emphasis, in my opinion, is on “living”. 

Cancer draws a line in the sand between the way we once looked at life and death and how we currently live after surrendering, accepting, letting go and integrating that insight into who we are. Cancer survivors have lived with the sense of knowing something is very wrong and not knowing what it is. We have heard the diagnosis and learned a new vocabulary. We have experienced a whole host of physical changes and the emotions to go along with those changes. And we are alive to tell the story.

My personal relationship with cancer began in 1991, when my sister Kristin had a reoccurrence of malignant melanoma that metastasized on her lungs and brain. She died before her 36th birthday, leaving behind a husband and 2 small boys, not to mention me and all the other people who loved her. At the time of Kristin’s death, I thought of cancer as evil. As I grieved her loss, integrating reality into who I was and how I understood life; slowly but surely, over time, my opinion changed.  Since 2003, I have developed a dramatically different opinion.  I now know cancer to be a very powerful and proficient teacher with the potential for profound transformation.

The story of my non-existent left hand begins with a soft, non-painful lump on the inside of my wrist that I tried to ignore for about 7 weeks, hoping it would go away. An MRI revealed a 6-inch mass, beginning in my hand, filling my wrist and extending into my forearm.  A biopsy brought the diagnosis of very high grade, malignant fibrous histiocytoma, the most common form of soft-tissue sarcoma, a very uncommon form of cancer. My treatment package included chemotherapy and radical surgery.  

Having been a left handed woman for 54 years, I had become rather attached to my hand. “Doctor,” I asked, “What will happen if I don’t accept amputation?”  “You will probably die,” came the answer. I was encouraged to choose life and accept something life-altering, disfiguring, potentially life-saving, but – as with all things – there was no guarantee. I made my choice and I am here with you 18 years later.

In his remarkable book, Man’s Search for Meaning, Holocaust survivor, Viktor Frankl wrote:  “The last of the human freedoms is to choose one’s attitude in any given set of circumstances.” When confronted with the reality of amputation, and the choices afforded me with that reality, I needed to reframe my life as I knew it and change my perspective. 

A change in perspective means looking at the same thing from a different angle to create a different experience with it. I needed to move from my head where my mind was racing with questions, like: “How am I going to button my jeans, peel a carrot or write my name?” I needed to sink into and listen to my heart.  You see my heart knew that just as I had done many times before, I would move forward with faith, trust and confidence in myself; my support network of family and friends; and my medical team. And so, I said “Yes” to a very difficult thing.

I describe cancer as the narrow spot in an hourglass, and I am the sand. I have traveled from the top through that tight spot to the bottom, the same sand, but with a different arrangement. Life is full of narrow spots, not all of them labeled cancer; and not all of them negative. They indicate change. Our response to change is a good indication of our resilience.

Resilience is the outcome of our ability to respond to narrow spots with resources that promote health and well-being; and cushion us against being overwhelmed. We all have resilience.

In 1948, the World Health Organization wrote the opinion, “Health is a state of complete physical, mental and social well-being, and not just the absence of disease.” We are all capable of being physically, emotionally, cognitively, socially and/or spiritually forced out of our comfort zone from time to time. That is what makes resilience an essential component in anyone’s health and well-being.

Change is the rule, not the exception. It has been said that expecting bad things not to happen to you just because you are good; is like expecting the bull not to charge just because you are a vegetarian!

We cannot control the inevitability of change. We can only control how we respond to it. Small wonders/changes happen every day; the kind we assume, so routine, perhaps, that we seldom even notice: things like waking from sleep or the sun rising and setting. We look at these “natural” changes with anticipation and comfort, and even experience a bit of awe at their existence when we see a glorious rainbow after a sudden thunderstorm.  Not so, all of the “other” changes that are out of the natural rhythm of life; those that occur in our family and personal life, finances, employment, living conditions, health, and more. We have most certainly been reminded of that in the last 12 months!

Narrow spots include crisis and disaster to be sure, but also all of those other things – positive and negative; large and small – that happen in life, whether by accident or design, that bring about a new arrangement in our sand. The challenge is to say  “Yes” to what is and to navigate the passage with courage, patience and intention.

So, if we all have resilience, how do we enhance it?

There are more than 10,000 books on Amazon with resilience in the title. Obviously, there is an abundance of information and one size does not fit all. I did not read them all in preparation for today. I have read several of them overtime, however. 

According to the experts, resilience is enhanced primarily by putting forth the effort each day to focus on what is possible – cultivating the positive. This is not Pollyanna, sitting at a table for one, wearing rose-colored glasses, and floating effortlessly though life! It is responding to reality with realistic optimism.

There is scientific evidence that our brains have a negativity bias, an instinct in us all that makes negative experiences seem more significant than they really are. In other words: We’ve evolved to give more weight to our flaws, mistakes and shortcomings than our successes. We focus on the C grade instead of the A. We focus on fixing problems often before celebrating success. While the negative screams at us in the dark, the positive only whispers while shining a light on things that are going well. Shining light on something allows it to be seen more clearly. We would do well to listen to the whispers. Positive emotions expand our awareness and make it easier for us to learn new things and actively gather Resources for Resilience.

So does this mean we only focus on the positive?  No, certainly not. Realistic Optimism has a focus on the positive without denying the negative. We need to:

• • accept the reality of the circumstances;
  • honestly assess the challenges;
  • set the intention to see possibilities;
  • work toward some goal; and
  • have faith in the outcome. 

Rarely do significant, life changing experiences announce themselves. It is as if a phone rings, you pick it up and a voice says, “Ruth, the world, as you have known it, is no longer that way.”  And wouldn’t it be nice if that were a call from the Publishers Clearing House Sweepstakes? As cancer survivors, we have heard that voice and things are no longer as we have known them. Our first impulse in the face of an overwhelming change like cancer is often fear.

A favorite definition of fear is: False Expectations Appearing Real. Images thrown on the screen of our imagination can seem much more daunting than in actual fact. Fear keeps us from being open. It closes us to possibility and hampers us from moving forward. It does not prevent us from experiencing narrow spots; it only makes the passage more difficult. The secret is not to fight the passage, but to gracefully accept “what is” and embrace the passage with a patient, courageous reconciliation with reality.

We can go kicking and screaming through our narrow spots, but we will go. And when we reach the bottom, we can stick our head in the sand and pretend nothing has happened, or …we can rest, patiently, head up, and discover our sand’s new arrangement – sifting through the sand that has been refined and redefined in the passage and discovering new things about ourselves and those who travel with us on life’s journey. The hourglass of everyone within the sphere of the identified “patient” has been overturned as well. Caregivers are co-survivors. No passage is ever a solitary one. Nor should it be. Connection is essential to well-being. Isolation is deadly.

Patience is not waiting passively until someone else does something; nor is it stoic endurance.  It has everything to do with a gentle, honest relationship with oneself.  It asks us to be present, mindful; hopefully able to say,  “Yes, this has happened.  And now what?” We focus on possibility in response to the reality of our situation. “Yes…, AND…” is living abundantly. Grasping for control, saying “Yes…BUT…” is living with scarcity. 

  The world would certainly be a different place if more people came to each new day with an attitude of abundance, rather than scarcity. Think about the people in your life who live with abundance of spirit and an awareness of grace.  Those “Yes…And…” people are the ones you want to be present for you when you are experiencing a narrow spot. During my active cancer treatment, a community of countless people surrounded me and held me up in a beautiful, palpable web of support, care, concern and prayer. They sent me messages, cards and gifts that warmed my heart, lifted my spirits, brought tears to my eyes and smiles to my face. I discovered that when I asked someone to help me – allowed someone to help me – by giving them something to do, it was a gift to them as well as a gift to me. I was literally showered by the gracious spirit of the divine that is inherent in all things. I pray that my gratitude was sufficient.

I am willing to bet that cancer is not the first nor the only narrow spot you have experienced in your life!  Think back to those changes I ask you to ponder and write down earlier. Do they represent a narrow spot in your life story? A narrow spot is a place, an event, a relationship, a failing or a falling apart of something that brings us to our knees with the realization that we are no longer in control. We are simply inadequate to handle the task. And finally, we collapse into grace. 

When we are certain we can’t take another step and we do, it is grace.  When we are certain we can’t find the light at the end of the tunnel and we do, it is grace.  When we are certain we can’t take another breathe and we do, grace is breathing through us. 

I am a woman of faith and I assure you my faith has never provided any exemption from experiencing narrow spots. My fall through the narrow spots of life has been cushioned by my faith. It is for overcoming fear and experiencing life’s narrow spots – fully, faithfully, and with intention.

We don’t need to be defined by our narrow spots. Instead, we can learn from them and discover what it is that has allowed us to survive and become who we are – to be aware of how we have integrated our narrow spots into our wholeness on the other side.

• Make the Intention to be Whole – Recognize what makes you uniquely strong, and own it! 
• Learn new things as often as you can. 
• Practice Presence/Mindfulness – This is not sitting cross-legged on the floor saying, OHM. It is noticing the moments of life without judging. 
• Don’t dwell on the negative overlong. 
• Have Faith – Any circumstance in life, no matter how challenging it appears, if responded to in faith, can be transformed. 
• Be Upheld by a Community of Support – Ask for and accept help, as well as all of the meals, cards and gifts you receive
• Express Gratitude – It is a powerful resource. Gratitude does not deny pain. Being grateful does not “fix” anything. Gratitude gives us a new story. It opens our eyes to see the light at the end of the tunnel.
• Practice self-care – not a selfish act! It keeps us going by tending to our physical and spiritual needs daily like: sleep, nutrition, physical activity, and mindful practices; slow down, breath deeply and listen to our heart; and gently and honestly face limitations and seek possibilities.
• Maintain a Sense of Humor – Laughter really is good medicine. Most people would say there is very little funny about cancer – but I did find that maintaining my sense of humor kept my resilience up and also kept those in my circle of support more fully engaged.  From the name that tumor contest – to a Farewell to Arm Party, we laughed. I have learned 3 positive things about amputation: I have not lost a “pair” of gloves in 18 years,  I can seek a discount on manicures, and I only have half as many age spots as other women my age.
• And finally, Have Resilient Role Models – Know who they are and what makes them so.

Amy, my first grandchild, was born 10 months after my surgery.  I was more than a little apprehensive about becoming a grandmother for the first time, borrowing more than a bit of trouble worrying about diaper changing, playing patty cake and making French braids in a little girls hair – focusing too much on what I would have been able to do before losing my hand. A dear friend suggested that I stop borrowing trouble and have confidence that this child would make room for me the way I am. She was so right! I have been surprised and blessed by the discoveries that my granddaughter has brought to me.  Now 16 years old, Amy was born after having a thalamic brain hemorrhage and has compromised use of her right side. Together, we make a perfect pair of hands.  Amy has had to work so very hard to achieve all of those things that other children seem to do with no effort at all. 

Since the age of 4, Amy has had epileptic seizures, which we always knew were a possibility but hoped would never become a reality.  Needless to say, this has been a traumatic change in her life journey and that of those who love her.  Her resilience, tenacity and child’s ability to be able to work with “what is” is inspiring.  

Being with someone you love – more than your heart can hold – when she is having a tonic-clonic seizure is an incredibly frightening, humbling and amazingly valuable experience. Five minutes can seem like an eternity!  Within that five minutes, there is nothing you can do, except to be – with her.  And when it is over she sleeps, allowing her whole being to regain equilibrium.  She awakens interested in making the most of the next moments of her life, while we are trying to string those same moments together into some preconceived picture of what life ought to be.  

While medication controls her seizures, epilepsy and the science of epilepsy care and medication take its toll on the Amy that we have known. We who love her go through narrow spots all too frequently, sometimes, but not always with patience, faith and confidence that we will find some meaning in the new arrangement of our sand. Through it all, Amy is the most positive person you could hope to have in you life. Amy is my role-model for resilience.

In the song, Closing Time by Semisonic, there is a lyric, “Every new beginning comes at some other beginning’s end.” There is generally loss associated with narrow spots and loss requires grieving –  grieving the loss of a dream or a goal, of a loved one, of a body part, of a relationship, of a position at work or in the community, of a prized possession, the list goes on. Grieving any loss is a journey of discovery, surrender, acceptance and letting go; integrating the loss into who we are and how we understand life… over time, creating a new relationship with what or who is gone. To grieve well the loss of anyone or anything is a spiritual skill worth developing.

There is abundant room for variation on any grieving journey because there is no roadmap with which to travel, no time table and no neat progression from one stage to the next. What experts do agree upon, however, is that if you do not grieve a loss, it will wait for you. It will not dissipate and disappear on its own.

Living with 3 questions over time helps in navigating the grieving journey: What is truly lost? What remains? What is possible? 

In my case. what was lost was more than my dominant left hand. What was truly lost was the ability to do everything that I used to do in the way I used to do it. What remained was the rest of me and the determination and intention to live life. What was possible was anything I wanted to accomplish with the right amount of patience, persistence and grace; the power to decide how and when that would happen; and the ability to ask for and accept help.

I recently had a conversation about my one-handedness with a very curious young child. After suspiciously looking up my sleeve to see if I were hiding it somehow, like other 4-year olds, he asked, “Will it grow back?” No was my obvious answer. “I bet you can’t do a handstand,” he said emphatically. “You are right,” I replied. “But I could do an elbow stand if I really wanted to.” Really wanted to is the operative phrase here. I have learned to employ all of my remaining physical assets to accomplish what I choose to make a priority.

Depending upon your perspective, your glass may be half-empty or half-full. The real question is: How heavy is it? That depends on how long you hold it. The same is true for grieving. It is important not to hold grief continuously for too long – it gets really heavy. Best if we can put it down from time to time. And then there will be times when we pick it up again. Some grieving never ends.

Experiencing grieving moments, as I have come to call them, actually bring me further along my grieving journey and I can be grateful for them now. Every day, I am confronted with something that is two handed. And I have the opportunity to learn to do that thing a new way, to ask for help or to choose not to do that thing.

Sometime make a list of all the things you do in your life – and the people with whom you engage in those activities. Then ask yourself, “If I only have $100 of energy in a day – no saving account from yesterday – no pocket to stick anything in for tomorrow – how would I spend my money?” This exercise helps to set priorities and provides an experience of personal power when we can act on those priorities and let go of what or who needs to no longer appear on the list. 

Someone once said to me, “You are so lucky [always a bad beginning to a comment, in my opinion] that your cancer only lasted 3 months.”  There is certainly truth in that statement, well-intended, perhaps, but certainly a micro-aggression. I live with the results of my successful cancer treatment everyday. Someone else once told me that I make life as an amputee look easy.  I can assure you that life is not and has never been “easy” for me. I have experienced numerous narrow spots. I have made a list which I will not be sharing with you today. My narrow spots have been positive and negative, large and small, have included crisis and disaster and have occurred by accident and design. In my response to them, I have stumbled more often than I have succeeded.  And I am not ashamed to say so. I do not have “the answers” for myself or for anyone else.

Poet Rainer Marie Rilke wrote, “…Have patience toward everything unresolved in your heart and try to love the questions themselves…. Do not seek the answers, which could not be given to you now, because you would not be able to live them.  And the point is, to live everything.  Live the questions now.  Perhaps then, someday far in the future, you will gradually, without even knowing it, live your way into the answer.” 

Don’t be too quick to seek or accept answers; or gloss over pain and grief with busyness. Take time – all the time you need. We rarely get to choose our narrow spots; but we do get to choose what and who we take with us on the passage.

After you have gone through the narrow spot, compare what actually happens with what you feared would happen.  Practice this over and over until fear of the unknown slowly transforms into faith born from experience. Transformation comes out of possibility, not out of scarcity.

All growth is about changing and adjusting to “what is”.  Suffering, on the other hand, is resistance to “what is”.

When confronted with a narrow spot, name it, speak of it and gather information.  Ask for help. The help you discover may come from a variety of sources because narrow spots affect all 5 dimensions of life: physical, emotional, cognitive, spiritual and behavioral. Seek out trusted friends and family, a spiritual advisor, therapists and/or healing practitioners from a variety of modalities. Listen to their counsel and remember that wisdom has no age requirement. Participate in classes, retreats and workshops. Mindfulness-Based Stress Reduction has been a very significant resource for me. Read books on a variety of subjects, not just the ones found on the self-help shelf of the bookstore!  All of those external resources, will enhance and enlighten your internal resources, those gifts with which we have all been abundantly and uniquely blessed.

Joseph Campbell wrote,  “We must be willing to let go of the life we planned so as to have the life that is waiting for us….Each of us is a completely unique creature and, if we are ever to give any gift to the world, it will have to come out of our own experience and fulfillment of our own potentialities, not someone else’s.” 

It is often after the passage through a narrow spot that we discover new gifts and potentialities because our sand has been refined and redefined.

The help that I have sought over time has given me a richer vocabulary with which to tell my story; but the places of helplessness and fear are real and transformation is not effortless. In times of transition we resist or surrender; we swim hard against the current or we relax and float with it; we stay stuck or we grow; we crumble or we build; we protest or we accept; we see no hope or we see possibility; we stick our heads in the sand or we patiently discover the reality of the new arrangement in our sand…….. and then…..inevitably…….our hourglass is upended again.

No one and no thing is permanent, except the presence of the divine.  Change is inevitable. Transformation is intentional. There is no purpose in self-pity. Change “Why me?” to “Yes, this happened. And now what?”

Krista Tippet, the host of NPR’s On Being, recently wrote this beautiful restatement of my hourglass metaphor. “…If I’ve heard one thing most insistently, with an infinite variety of circumstance and struggle, from absolutely every beautiful and wise human I’ve ever met, it is this: We are creatures made, again and again, by what would break us. Yet only if we open to the fullness of the reality of what goes wrong for us, and walk ourselves with and through it, are we able to integrate it into a new kind of wholeness on the other side.”

Develop an ongoing practice of letting go as the hourglass turns one more time, and one more time, and one more time, until adjusting to our sand’s new arrangement becomes a way of life. The Shaker tune says: “To turn, turn, will be my delight..for in turning, turning, we come round right.”

I heard a speaker once who described himself as an “irritational” speaker. I wish I had thought of that!  Sand is important to my message. It is an abrasive. Even a small amount irritates when it is present in an unexpected way. However, I have stuck with “inspirational” speaker. The root definition of the word inspire is  “to breathe into.”  So…I invite you to breathe in even one grain of sand from this message, and allow it to provide some irritation to an attitude that you might hold about living life as a cancer survivor. You know what happens to the oyster when sand gets in?

It makes a pearl. May we all create pearls of resilience in response to life’s inevitable narrow spots.

Thank you for listening.