Saying yes to life….

Below I’m posting an essay written by someone I’m proud to call friend. Someone I’ve met through this blog and who happens to live about ten miles away from me so I’ve had the pleasure of spending time with her. She was recently published in The International Forum for Logotherapy and gave me permission to reprint the piece here. Logotherapy is Viktor Frankl’s life’s work in action. Viktor Frankl is a man who speaks to the human spirit. And here Carol speaks to it as well. I highly recommend anyone who has not already done so to read Man’s Search for Meaning which is mentioned in this piece and which also greatly influenced me.

This article is not explicitly about “mental health,” but you will see that it fits very well into the overall energy I try to exude with this blog. It is a story of  victory of the human spirit. And the way that victory is found in Carol’s story is the same way it is found in those of us who deal with the issues more regularly dealt with on this blog. I found it beautifully instructive for my own life and process.

The International Forum for Logotherapy, 2008, 31, pgs. 103 -108

Saying YES to Life after Life Threatening Illness and Amputation
By Carol L. Scholar

Viktor Frankl often used Nietzsche’s famous quote: “He who has a why to live for can bear with almost any how.” After my first reading of Viktor Frankl’s book Man’s Search for Meaning in my late 20’s, I recall contemplating the fact that suffering and loss are a given in life; that we cannot always control what happens to us. I was comforted to learn about the “last of human freedoms,” the ability to choose one’s attitude in a given set of circumstances.4, p.12 Little did I know then that I would soon be called upon to live these theoretical constructs. Frankl also raised the brilliant concept of the Defiant Power of the Human Spirit. It is defined as a conscious resistance against biological, psychological, or sociological limitations; it is the human capacity to take a stand against an unalterable fate.1, p.71

I have experienced this Defiant Power of the Human Spirit and the human capacity to stand up to adversity in a dramatic and personal way. I wish to offer my journey to help others, either new to Franklian Psychology or seasoned practitioners doing meaningful work, to understand the immense value of this concept and offer further validation for its efficacy. Before I share my personal experiences, I want to provide a little background about my professional training. I am a Registered Nurse and Professional Counselor. I feel that knowing this will help readers to follow my perspective along the journey that has often employed my Defiant Power of the Human Spirit.

Frankl’s ideas offer a hopeful way of looking at life and suffering. He teaches that we have a healthy core, or spirit, that cannot get sick or be destroyed. That spirit is what is essentially human about us, and it is what we can rediscover if we feel we have lost our footing. This is very different from my early training and experiences as a Nurse. I worked within the paradigm of the medical model, which focused on sickness and pathology, diagnosing, and fixing or curing. Medical professionals were “the authorities and the experts” who often had a paternalistic attitude of knowing what was best for “the patient.” Having worked as a Nurse in emergency rooms, intensive care units, psychiatric settings, and later as a rehabilitation counselor, I witnessed that life is full of suffering related to circumstances that really can’t be fixed or cured. Among them, facing the very early death of oneself or a cherished loved one, or trying to adjust to a severe, chronic illness or acquired disability. Even though there are medical aspects to these examples (such as pain relief and prescription of adaptive devices), they also require guidance into the meaning of the event or illness for the individual, which is more spiritual than medical. It was my frustration with the medical model, and lack of quality time to help my patients with their emotional and spiritual issues, that led me to pursue more training in counseling. Nurses of my generation used to give back rubs as standard good care. These were usually my only opportunity to really connect with my patients and, at least, to validate their struggles and fears.

My training in the field of Counseling has been fairly broad, but my experience has been that none of the approaches really emphasize the importance of helping a person discover the meaning aspects of their situation to the extent that Franklian Psychology does. For example, Frankl’s message that happiness is an outcome of doing and giving, rather than from directly trying to “figure it out,” challenges our thinking and approach! Many people ponder for years, often with the help of a therapist, “how to be happy” and yet it eludes them. Instead, from the Franklian perspective, “how to live a meaningful and purposeful life” should be the question to ask. Little did I know when first reading Frankl’s book that just a few years later I would be seriously challenged and would need to struggle with this question and stand up fiercely against my fate.

My Experience and the Defiant Power of the Human Spirit

At age 34, I was diagnosed with a malignant soft tissue sarcoma that resulted in an above-the-elbow amputation of my right arm. It was only 3 weeks between the time of discovering the tumor and the actual amputation. I had little trouble making the decision to have the surgery after hearing the probable consequences if I did nothing. The tumor was not receptive to chemotherapy or radiation; and, I was told, I would most likely be dead within 3 years! The thought of dying so young and leaving my children motherless was worse than the fear of loss of any body part. I realize now that making the decision to have such radical surgery was taking a real stand against early death. I felt I had to do whatever I had to do, in order to live. I utilized every resource I could imagine to help myself get ready for the surgery and to heal afterwards – including therapeutic touch, relaxation training, and learning about various alternative nutritional approaches.

From a distance in time, I would like to explore more specifically some of the internal and external realities that I faced with this challenging event. The first thing that I had to face and manage was my sense of loss, grief, and fear – so I could go on being a mother of two young children. I recognize today, as I did then, my primary motivation for living was my love for our children. There were many other people I cared about – as a wife, mother, daughter, and friend – but it was our young girls, then 11 and 14, who were most prominent in my mind.

Years earlier, I had experienced psychoanalytical insight therapy but felt it wouldn’t be helpful in this crisis. I had heard about a psychotherapist who specialized in grief and loss issues and was using non-traditional methods of psychotherapy. I set up an appointment before my amputation surgery, not knowing what to expect. It was 1984 and New Age thinking was really taking a hold. I didn’t agree with many of those ideas, especially the notion that we cause our own cancer. I hoped I wouldn’t find my new therapist to be judgmental. As it turned out, she practiced more of a spiritual approach than a medical one, and she was incredibly helpful. In 1995, I wrote an article about this therapeutic encounter: Saying Goodbye: Allowing the Pain of Loss. It appeared in a newsletter, published by Northwestern University. Below is an excerpt from that article:

I was sitting on the couch. It was a sunny day and brightness filled the room. I remember thinking the sun should not be shining. I told her of my unbelievable, impending loss. Soft gentle music played as I sat in silence, crushed by the weight of heavy emotions. She finally asked me if I was willing to try something. She asked that I reflect and share with her the pleasures that my right arm and hand had given me over the course of my life. I closed my eyes and visualized all the ordinary yet wonderful things I had experienced. The tears flowed easily as I told her about my children that I had held so lovingly in my arms when they were babies…the care I had enjoyed giving patients in my work as a nurse… the earthy pleasure of kneading bread and of course much more. She then asked me to express my gratitude for all that my arm had given me and to say goodbye to that part of me that has served me so well for so many years. This simple yet meaningful exercise helped me more than words could ever express to discover the depth of my pain. Sharing my incredible sadness with another so honestly allowed me to validate my own reality.5

In the article, I also raised the issue that we live in a society that pressures us to value “living in the fast lane” with very little time or patience for personal pain and healing. We often hope for a quick fix. Medicalization of many of life’s conditions has contributed to the idea that solutions usually lie outside of us and we often look to professionals and self-help experts to remove our anxiety, sadness, and depression.2 We often fear that our feelings are pathological and we wonder, “What is wrong with me?” I was told by one provider: why couldn’t I just go with the flow…whatever was going to happen to me, I couldn’t control anyway. Initially, I did question if my emotions were “my psychological problem.” In reality, they were normal feelings of angst in a most difficult and traumatic situation. I perceive now that my training as a Registered Nurse and the enculturation I experienced in the medical field led me to question and doubt myself. I had to stand up for my right to feel what I actually felt. I was quite scared about the cancer coming back, which is a normal worry of many people who’ve had cancer.

I was shocked by the insensitivity and lack of empathy given the enormity of my situation. It was no small matter to be thinking about the possibility of losing everyone and everything I loved if the cancer returned and I left this planet! I wanted to stay right here…not anywhere else…no matter how wonderful the people with near death experiences claim the radiant light is! I had to learn to “stand up for” what I believed to be my truth in contrast to the pathology model, which oppressed me internally and externally. Professionals may assume they know best what a patient is experiencing or needs. They are often too quick to judge. I knew this because I worked within this model. As a medical professional myself, and now a “patient,” I had to stand up to some medical professionals who missed the fact that often a patient is upset and angry because of receiving poor services or equipment, instead of being angry over their situation, loss, or disability. It is not always the patient’s problem or a stage of grief that causes anger. It can be a legitimate complaint that health professionals should take to heart and try to improve.

I then had to defy prevalent New Age thinking related to the myth that we cause our own cancer. There were many popular books then that relayed this message. Some still do but may have softened the message a bit. After my surgery, I met a New Age Guru who told me that he could tell just by looking at me that my liver was full of toxins and I had better follow his advice and treatment guidelines. I told him that I was insulted and didn’t believe him. But I was vulnerable then and scared. I asked myself, “Why did my body betray me… had I done something wrong?”

Although anxiety and stress and negative emotions can certainly be a detriment to one’s quality of life, it has never been proven to be directly causal to acquiring cancer. In fact, I had plenty of stress, and am living proof that the toxins and stray cells didn’t take over – since I am still alive 26 years later! I once wrote a newsletter column about how, as a Nurse, I had seen so many wonderful, caring people – including young children – die an early death, and it certainly was not their fault. But I felt like I had received a “triple whammy”: having cancer, having a disability, and then being told I actually may have caused my own cancer!

I also had to fight against the shame I initially felt as a person with a physical disability and bodily “difference.” Knowing what I know now, I am embarrassed that I felt shame. Body image was then, and still is, a preoccupation for men and women. At that time, there were very few role models of people with disabilities. I recall watching the “Pepsi Generation” advertisements on TV, where men and women were playing volleyball on the beach. I recall feeling distinctly insulted and saddened – where were the people who used a wheelchair or had only one arm or one leg?

Finding My Voice

I had to stand up to, and defy, my own and society’s stereotypes about people with disabilities as being “less than” or “not fitting in,” in order to come to a place of strength and acceptance of myself. I accomplished this largely by accepting a position with an Independent Living Center and learning about Independent Living Philosophy. I was excited to enlighten others about the truth – that exclusion of people with disabilities from the mainstream was a civil rights issue and not a personal medical problem. People with disabilities are not “sick.” Many people with disabilities live inferior lives because of the lack of physical accommodations or necessary flexible supports; not because they are too sick, and choose to stay home.

The Independent Living Movement started in Berkeley in the early 1960’s, and spread the concept of consumer driven services. Gerban DeJong wrote a scholarly, consciousness-raising paper, Independent Living Movement Paradigm, which contrasts the medical model and the Independent Living Paradigm. He wrote:

According to the IL paradigm, the problem does not reside in the individual but often in the physician-patient or professional-client relationship. Rehabilitation is seen as part of the problem, not the solution. The locus of the problem is not the individual but the environment that includes not only the rehabilitation process but also the physical environment and the social control mechanisms in society-at-large. To cope with these environmental barriers, the disabled person must shed the patient role or client role for the consumer role. Advocacy, peer counseling, self-help, consumer control, and barrier removal are the trademarks of the (IL) paradigm.” 3, p.442

I embraced this philosophy and was empowered and liberated by it. I believe how a person feels and thinks about themselves – their attitude toward their loss, condition, or impairment – is of critical importance and relates to how “disabled” they will feel. This, of course, directly relates to Frankl: It is not so much what happens to us [fate], as how we think about it [the attitude we take toward the condition]. A radical departure from thinking of oneself as a “patient” and being in the “sick role” is needed in order to liberate and empower a person to action. I believe this awareness should also be encouraged when working with people with mental health challenges and brain disorders, such as Bipolar Spectrum Disorder and Schizophrenia, since these are highly stigmatized disorders.

Before my interaction with Independent Living, I had no direction in finding meaning or a purpose in what had occurred to me. No medical professional ever asked me: “So what now? What is the meaning you find in this? What will you do next to make this into something meaningful and get on with your life?” Luckily, being around other empowered people with good self-esteem who were working to change the status quo was my salvation. I found a new way to look at things, a new attitude, and a new purpose. I became a consumer/patient advocate; and, over the years, I have had the great opportunity to share what I learned through my professional work and volunteer service. Hopefully I’ve inspired people to find the Defiant Power of the Human Spirit within themselves.

There were many battles on many fronts, some with my own thoughts and perceptions. I learned that the illusion of one’s sense of control and order can be turned upside down in a split second. I had to “get right down to the nitty-gritty” of my values in life to solidify my identity again and get my feet replanted on the firm ground of the present. I remember gazing… at length…in those early days, at the beautiful sky and trees and birds and flowers. I loved nature and my family. I knew also I had to survive to continue with my own goals and dreams and to help others by sharing what I had learned and experienced. Otherwise, why not just give up and let the cancer win? Elisabeth Lukas says, “Each grief can make us aware of a reason for gratitude.” 1, p.114 I know with certainty that one cannot escape grief in life. But one can be grateful for all the lessons, meanings, and growths that emerge as one discovers what the demand quality of life is to which one has to respond to the best of one’s ability.

Carol Scholar, MS, RN, C, CRC, LPC [cyscholr (at) charter.net] is a Certified Rehabilitation Counselor (Graduate of Syracuse University), Certified as a Psychiatric and Mental Health Nurse (ANNC), and a Licensed Professional Counselor in the state of North Carolina. She is pursuing a Psy.D. degree at the Graduate Theological Foundation and is enrolled in studies with the Victor Frankl Institute of Logotherapy. For the past 3 years she has been working as a contractual psychotherapist with University of North Carolina at Chapel Hill, School of Nursing, providing counseling to low-income mothers with depression.

References
1. Barnes, R. C. (2005). Franklian psychology: An introduction to logotherapy. Abilene, TX: Viktor Frankl Institute of Logotherapy.
2. Conrad, P. (2007). The medicalization of society: On the transformation of human conditions into treatable disorders. Baltimore: The Johns Hopkins University Press.
3. DeJong, G. (1979). Independent living: From social movement to analytic paradigm. Archives of Physical Medicine and Rehabilitation, 60, 435-436.
4. Frankl, V. E. (1959). Man’s search for meaning. NY: Pocket Books.
5. Scholar, C. (1995, Oct). Saying goodbye: Allowing the pain of loss. Capabilities. Northwestern University Prosthetics Research Laboratory &        Rehabilitation Engineering Research Program.