LIVING with Illness Service
Personal Essay Presented at the First Unitarian Universalist Society of Albany, NY on Nov. 7, 1999
In September 1998 my life came to a screeching halt. One week I was healthy, happily raising my family, conducting my psychotherapy practice, biking and hiking. The next week I was sliding down the slippery slope of losing my speech, memory, ability to reason, and functioning of my right side. An MRI revealed a brain mass and I was whisked into an emergency craniotomy. The biopsy indicated I had an aggressive brain tumor called a glioblastoma multiforme. Surgery removed the tumor, and radiation and chemo could buy me some time. I was told that people with this type of tumor live an average of 12 to 18 months. (I will share with you my reaction to this news by quoting from an essay that I wrote early in my illness.)
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 hearů
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 (I was originally diagnosed with breast cancer in 1992). Now I have two cancers unrelated to each otherů
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 my cognitive and motor skills improved after surgery and reduced brain swelling, I challenged myself to build a new life. I have lost a great deal - my career, my private practice, half our family's income, the dreams of a future with my husband and children. Additionally, I have a number of deficits such as poor short-term memory, difficulty concentrating and organizing, and halting speech.
But I don't have time to look back. I have worked very hard to accept having a terminal illness and disabilities, while still maintaining hope and living for today. What I have discovered is that this is a profound and personal journey with many gifts given along the way, and many opportunities to share gifts with others. If I spend all my time mourning what was, I will miss what this experience has to offer.
There are friendships that might not have blossomed with quite the same intimacy. There are poignant moments to be shared with family. The knowledge that endless time is an illusion makes the time we have immeasurable.
There is stunning beauty in nature to be seen in new ways. Really being there for this precious moment.
There is humor which makes the situation more tolerable. I'll share my favorite brain tumor joke, which I've modified to be ecumenical. (In order to get the joke, you need to understand something about brain tumors and deficits. One deficit many brain tumor patients share regardless of where their tumor is located is a very poor short-term memory.)
In her book, "Hanging in There; Living Well on Borrowed Time," written over two decades ago, Natalie Davis Spingarn described a new subculture, "the not quite well." Indeed, as medical science makes advances, more people will become challenged to live meaningful lives while ill or even very ill. Today, I am speaking for this group, of which I am a member. I am talking about living well with illness, living with courage, and living with pride and meaning.
When I examine what variables made the most difference in being able to cope with my illness I come up with the following:
1. Friendship. Staying connected with friends and family. Speaking honestly with them about what I am going through in my illness. Not protecting them. Staying interested in their lives.
2. Solidarity. Getting and giving support through cancer and brain tumor support groups. Becoming part of the Internet brain tumor community. Developing strong friendships with other patients. Becoming empowered through knowledge. Volunteering to become involved in projects to further information about effective treatment for brain tumors.
3. Setting Goals. Lance Armstrong, winner of the Tour de France this year, who also happens to have had testicular cancer with metastases to his brain and lungs, is my hero. He is not my hero because he won the Tour de France, the most grueling bicycle race in the world. He is not my hero because he has presumably beaten cancer against all odds. Lance Armstrong is my hero because he dared to set a goal for himself despite grave illness and dire statistics. I believe that one of the commercials he appeared in says it all:
When I started to set goals and challenges for myself, incredibly I found I was able to significantly overcome many of my deficits. I divided these into short-term challenges, such as cooking meals; medium challenges, ranging from sewing projects to volunteering on school committees; and long-term challenges, such as returning to employment. I may never achieve my long-term goals, but at least I have set them.
4. Choosing Life. What I finally arrived at was very simple. I could choose to live with despair and bitterness, or I could choose to live with joy and serenity. (I would like to point out that I am not talking about people who are clinically depressed, because they need clinical interventions to allow them to see this choice.) Every five minutes I have to work at this. I am not always successful. Often I give myself permission to have a bad hour or a bad day. But then, again I choose life.
I would like to close with another poem I wrote recently while waiting to have an MRI: (See right column on top of page.)
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|T.H.E. Brain Trust
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