Intent. This is not a fancy or clever web page. Its sole purpose is to share an essay that I wrote after I was diagnosed with a brain tumor.
Background. In September 1998, in the full bloom of life, I was diagnosed with a highly aggressive malignant brain tumor called a glioblastoma multiforme. This obviously has been a cataclysmic event for myself and my family -- I was 48 years old with two children in high school, and due to speech and memory difficulties I had to immediately close my clinical psychology practice of 17 years, etc., etc. As a way of coping with my overwhelming emotions, I began to write about the experience (for further discussion of the writing process, see end of article), resulting in the following essay.
The summer of 1998 was not a perfect summer. It was just a regular summer. We took a week long family vacation to a beach in Maine. We took walks on the beach, collected shells, and hiked on a sea cliff trail admiring the rocky views. We argued. We laughed.
The sea stretches out forever, shimmering, moving to its own song, until it joins the sky.
We watched old sit-coms and cooked lovely shrimp dinners and the grown ups drank wine.
We are together.
My husband Dan and I met in graduate school where we were both pursuing our doctoral degrees in clinical psychology. Married since 1977, we led a simple but hectic life balancing the needs of our children, our careers, and each other. I had begun a solo psychotherapy practice when our daughter Cara was born 17 years ago, and it was thriving. Our 14 year old son Devin has attention deficit disorder with learning disabilities, and has overcome a lot with our support. It has been a joy to watch our children develop. A shadow crossed our lives in 1992 when I was diagnosed with a small but curable breast cancer, but I had recovered both emotionally and physically and felt that was all in the past.
Life flows on like a river. I find meaning in giving. I find meaning in the never ending cycles of the seasons, of being part of the earth.
At the end of August I began to develop strange speech symptoms, particularly noticeable to myself in my work with clients. I had trouble focusing on what they were saying, and responding to them the way I wanted to. It was as if I were operating in slow motion, my thought processes filled with molasses. This was particularly disconcerting to me, because responding to clients with empathy - really being on the same wave length as a client - was my skill as well as my art. I attributed this to the stress of working too hard.
Then, I had one occurrence where I was unable to talk to a waitress in a restaurant, and one where I couldn't stop stuttering in a therapy session. I began to have progressive trouble coordinating my right arm and leg, and ended up in the ER of Albany Medical Center, where a CAT scan showed a "brain mass" and I was admitted to the neurosurgical floor. An MRI revealed an operable brain tumor in the left frontal lobe.
I am numb. I am terrified. I'm 48 years old, with two children.
I'm on automatic pilot. I'm a very good patient. I hear the sounds of the MRI banging rhythmically and hum along.
I undergo a craniotomy to remove the tumor. Tissue analysis reveals not what everyone thought - a metastasis of the breast cancer - but a primary (new) cancer. I am diagnosed with a highly aggressive malignant brain tumor called a glioblastoma multiforme. This condition is treatable with radiation and chemotherapy - but the tumor will grow back. The time I have left is estimated to be 12 to 18 months.
I hear the words 12 to 18 months. I hear this through a long tunnel. I let in the words in bits and pieces - what I'm ready to hear, able to hear.
Dan and I cry. We speak of our love for each other. Cara comes and I'm completely honest with her. We hold each other for a long time. Devin comes later with my in-laws. We try to be up-beat. There is a parade of guests and flowers… I am floating on the love of my family and friends.
The surgery has removed the tumor completely and restored my right side functioning, but has left me significantly brain damaged. I can speak only haltingly, have problems with memory, problem solving, time management, attention and judgment. I have major personality changes, especially apathy and flat affect, and I am easily overwhelmed and frustrated. I can no longer work, or figure out my business account. I can no longer cook or drive. I remember how I used to be able to do things, but I can no longer perform these tasks consistently. But I am alive. When the tumor grows back, they can surgically remove it again, but they will also have to remove more healthy tissue, causing more brain damage.
I am terrified and very depressed. I curl up in a little ball and let everyone take care of me. I give up.
Treatment becomes my new job.
Incredibly enough, I am diagnosed with a local recurrence of breast cancer. Now I have two cancers unrelated to each other.
The family has been thrown into crisis. Who will take over my role? How will we manage financially? What am I still able to do? What outside help do we need and not need? How will we all cope with the enormous pain? We cry, we fight, we hug each other.
Slowly, slowly I begin to will myself to climb out of the hole I am in. It is a daily battle. I force myself to function.
As a psychologist, I understand intellectually about frontal lobe damage, and I read more about it. The frontal lobe is the "executive" of the brain, which coordinates planned activities, and gives an individual the ability to carry out purpose - the "gestalt" of an hour, of a day, of a week, of a month, of a life. It's as if my brain were shattered and I can still perform specific tasks, but not put them together. I find I can do more things…cook simple meals, volunteer in a nursing home, help my children with school work. But it is almost impossible to plan a day and coordinate activities without help. I constantly underestimate time needed to do something, spend too much time doing other things, and can't focus my attention. I burn food, miss appointments, feel completely overwhelmed when something goes wrong. Other family members and friends now need to take over my executive functioning. It is a daily struggle to accept my limitations and my mortality.
I decide to fight back. I decide to fight this brain cancer - physically, emotionally, and spiritually. Often, it takes getting through to the next minute. Often the biggest challenge is acceptance. One of the ways that I fight has been to discover the gifts of an illness.
The Gift of Love. I've learned how much I'm cared for by many, many people. I've been blessed with an overwhelming abundance of love and support from my family, friends, community, church, people from my past. There has been a steady stream of visitors, calls, flowers, gifts, offers of help. Ride pools arranged. Support groups. Reconnecting with old friends. Making new friends.
I've reached out for help, and people have responded.
The Gift of Mindfulness. Living in the moment. Appreciating a special minute with a child, husband, friend, now tinged with sadness. The beauty of stalks of wheat against the snow. The opulent sounds of a symphony. Many minutes are gifts.
Being really there, for this precious moment.
The Gift of Time. Within poignant limits friendship blossoms with such glorious sweetness and fullness. Conversations with a daughter to last a lifetime.
The knowledge that endless time is an illusion makes the time we have immeasurable.
The Gift of Honesty. Taking risks. Letting go of and resolving past conflicts. Forgiving and being forgiven.
Speaking from the heart about what is really important.
The Gift of Learning to Receive. This is a hard one for me, because I've been such a caregiver - to my family, my friends, my clients. Receiving is hard because it's part of letting go of what I can no longer do, giving up control, acceptance of what is. Learning to ask for what I need.
Receiving is giving full circle, for in receiving I still am giving.
The Gift of Discovering Family Strength. In our family, we are completely honest and open. We work out new roles in the family, new ways of relating to each other and helping each other. It is an up and down, painful process. Little by little people's strengths shine through.
Faith that the family is resilient and strong. Faith that the family will go on.
The Gift of Humor. We are able to joke. Take a break from cancer. Laugh at the world, at ourselves. We are able to joke about my illness. Tumor humor. There are perks after all. No bad hair days. You get a lot of hats as presents. You have an excuse for forgetting someone's name.
Humor gets us through some of the darkest times.
The Gift of a Spiritual Journey. This is a very personal journey. It is an exploration of the meaning one gives to life, to one's own life, to after life. For me, it has been a pilgrimage of coming full circle back to what I knew all along, but am now seeing in a clearer, wiser way. It has been about accepting what we can and can't control. It has been about how the walls of religion are really the walls of humankind. It has been about how we are more similar than different.
The journey for me has been about humanity and faith. It has been about accepting the darkness and the light.
These are the gifts of an illness.
As a way of coping with the enormity of this life event, I began to write about it. At first I was only able to see the horror my situation - and used writing as a coping style to begin to distance from and make sense of my overwhelming negative emotions. (Writing has often been documented to be helpful in coping with catastrophic events and illnesses. One resource I found useful was "Cancer Stories; Creativity and Self Repair" by Esther Dreifuss-Kattan [The Analytic Press, 1990].)
Gradually, through the process of many, many rewrites, I found myself slowly able to see the gifts of the illness. Through the rewrites and my intention to be completely accurate about what I was experiencing, I realized that little by little I was changing my belief system to where I could truly see and experience the gifts…..a feedback loop in which the more I wrote about the gifts, the more I could see and experience the gifts, the more I was able to see the gifts, the more I wrote about them, etc.
While we have no control over catastrophic and many other life events, what we do have control over is how we respond to them - including how we view them and the meaning we give them in our lives. (However, I often give myself permission to wallow in self-pity!) Thus, writing this essay has been both a gift and a journey in itself.
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