Fighting Life

By Marcy Clapp

I have divided my life in to two portions; the duck period of my life from the time I was born through August 23, 2002, and from August 24, 2002 to today which I define as the floating leaf period of time.

The duck period is the time of my life before I was diagnosed with an acoustic neuroma brain tumor. This is the time of my life when I envisioned myself as a duck floating in the water. On the surface I looked cool and collected but under the surface I was paddling like mad.

The leaf period of my life started on August 24, 2002 the day after I survived a 9 ½ hour surgical procedure to remove the acoustic neuroma and up until this moment. I no longer envision my self as a duck but as a leaf floating in a river, tranquil and whole, letting the current take me where it wants.

It’s not that a lot of wonderful things didn’t happen to me in the duck period of my life. I had a beautiful daughter on May 5, 1992, I married my soul mate in 1999, I had a wonderful career and I lived in England from 1997-2002. Living in England was the happiest time of my life, and where I learned what it means to have a quality life and friendships.

On June 19th 2002 after many years of being diagnosed with depression due to “stress” I finally got an explanation that made sense from Mr. Christopher Aldren of The Princess Margaret’s Hospital in Windsor. After seeing many doctors for many different type of problems, and many specialists who were all so eager to treat the symptoms, Mr. Aldren was the only one that really listened to me. After ordering a series of MRI scans and more comprehensive tests in London, Mr. Aldren’s office called to schedule a meeting to review the results.

By this time I had lost my balance and found it difficult to sit upright. I was dizzy most of the time, and I had ringing and fullness in my left ear. It was very hard to concentrate and to remember basic things. The normal headaches had progressed to debilitating migraines. I started to experience numbness on my face and I was taking a handful of prescribed medicines. Things were getting worst very rapidly.

On the day of our appointment, I walked in to be greeted by Mr. Aldren standing by his desk, “I’m afraid it’s not good news,” he said. I was immediately drawn to a set of scans that were put up on his light board. It was so obvious that there was a golf ball size dark spot on the brain of those scans. I immediately knew they were mine without him saying a word and I stated, “It’s a brain tumor”.

Mr. Aldren answered me with a long explanation that started with “Yes” and followed by “it’s a rather large 3 cm acoustic neuroma… a rare benign brain tumor that grows on the eighth cranial nerve leading from the brain to the inner ear…” I am not sure if he was done talking or not, but I just said, “Oh SXXX!” and then I sat down and started to cry. Sob actually, all over his lovely Saville Row tailored suit.

I had a very large brain tumor that probably had been growing for 10 years. To make matters worst we were in the middle of moving back to the U.S. In Mid-July 2002, Gracie, our dog and I arrived in the U.S. to be greeted by most members of my family.

By that point, Gracie had become my mother. At the age of 10, she was in charge of me. She had to maneuver us through the flight, immigration, customs and animal control. I could hardly stand up. To outsiders, it probably looked like I was drunk as I held on to the luggage cart for dear life.

Two weeks later my husband Bob arrived in Virginia. He had stayed behind to wrap up our life in England. I was sleeping most of the time except for the hour or so I spent swimming to get as fit as I could be for the surgery. My mom was a big help coming over everyday to with provisions making sure Gracie was busy and to look after us.

With the help of my family, and after several consultations with other doctors, I decided that Dr. John Niparko (Otolaryngolist) and Dr. Donlin Long (neurosurgeon) of Johns Hopkins Hospital had done this surgery so many times that I felt they could do it with their eyes closed. They were my choice and I never looked back. I felt safe in their hands. They were kind, intelligent, experienced and had extremely steady hands. Both their expertise was needed to remove the tumor. I couldn’t find words big enough and significant enough to express gratitude for saving my life other than thank you.

Before entering the hospital Bob and I managed to buy a house in Clifton, Virginia. We did this in less than 2 days, something we were never been able to do in the 6 years we lived in England. Suddenly, all decisions were easy to make. Bob automatically took care of everything and I began to trust him like I had never trusted anyone before. I felt so in love with Bob and Gracie. I only had one question “Why God?” and I would shout up to the sky mostly when I showered and no one could hear me.

After spending 10 days in intensive care I later learned about ICU psychosis. A disorder in which patients in an intensive care unit experience a series of serious psychiatric symptoms. Pain, brain swelling, high blood pressure, sleep disturbance, continuous lights on, stress, lack of orientation, and a cocktail of all sorts of medications and pain killers result in a sort of delirium. No pun intended but I really needed this psychosis as much as I needed a hole in the head. I heard voices, I had nightmares, I was paranoid, disoriented, agitated, excited, aggressive, passive and generally what anyone would call abnormal behavior. Some psychotic episodes were funny, but mostly they were terrifying. Each would make a great story over drinks.

I often wondered how something that I experienced in my head seem and feel so real? Some people sleeping rough suffer from mental illlness, not all made bad choices as many people think. When I see someone on the street talking to themselves or rushing away from something that we can’t see, I think, ‘There but for the grace of God go I”. I have learned to have a deeper sense of compasion thanks to what I have experienced myself.

After 12 days in the hospital I came home just in time to send Gracie off to her first day of school in the U.S. A goal I set from the day I stepped foot in the hospital.

The next year or so were most definitely not the happiest time for us. Recovering was a struggle, but I was determined. I didn’t consider that I had to work on both my mind and my body. Physically there were many issues with balance, walking and coordination, deafness and ringing in one ear and lack of energy. Physiologically I had become disinhibited, disconnected, depressed, angry, unable to remember my history, and with an unwavering bullXXXX meter!

Slowly my memory started to come back. Looking through family photographs has helped a lot and even though I could see myself in the photograph there would be no emotion associated with the event. It’s like when a friend shares their holiday photos with you- they look like they had a good time but you really don’t feel their emotions since you didn’t experience it or were there. That of couse is very different if you look at one of your own photos. You immediately remember what went on, how you felt, who was there, what it meant to you, etc. etc. Just think what it would feel like to look at photos of your life- your wedding, your baby, your first home, your grandparents captured on photographs and yet you have no emotion with the image other than recognize the people or the place? This was the main source of anger and frustration and sadness.

Yet after a lot of blood, sweat and tears Bob, Gracie and I have re-connected. I acknowledge the great benefit I received from their love and care. Intellectually I understand that it was the circumstance and not my fault but rather something that happened to us, however, emotionally I struggle with guilt and shame. Nearly 7 years later I struggle to express my complete debt and gratitude to my husband and my daughter without feeling a deep ache in my heart.

I have heard how crisis can either break a family apart or bring them closer together. I have to credit Bob and Gracie for their hard work and unwavering support that resulted in weaving us together in to a much closer family. In contrast to Bob and Gracie I have never been able to regain the closeness I had with my family. Regrettably we have grown apart.

Maybe they are hoping for the old me to return, maybe they don’t like the new me. I can understand that. We used to be close, but since my surgery, I feel a great deal of anxiety when I am with them because I don’t think they understand me and because I feel they don’t accept me. We manage on a superficial level and keep conversations light and general. It’s the only way to avoid tension and anger and even though it’s not satisfying to me- it seems to be to them.

Today I am grateful for the brain tumor. Really. I understand the meaning of living a more meaningful life. This means not fighting life but accepting what comes my way.

Some people have asked me if this means that I have surrendered. And the answer is both yes and no.

I have surrendered in the sense that I accept what life delivers and try to work with what comes my way the best way I can. I try to learn from each experience and to get some value that will feed my hunger for growth and spirituality. I look deep within myself for answers and accept the decisions that I make. I have surrendered in that sense and no longer try to fit a square peg in to a round hole. I have surrender to the weeds in my garden. As much as I pull them out, they grow back. I’m not weak-I’m smart.

And no I have not surrendered to injustice, unfairness, cruelness, jealousy, disrespect, poverty, prejudice, bigotry and intolerance. I reach out to those who need my help, and stand up for those that may not have their own voice.

My daughter, at 14, began supporting “Invisible Children”, an organization that builds schools and sponsors children from war torn Northern Uganda. I am extremely proud of her for her generosity and compassion. It fills my heart with joy.

I have never been interested in politics, but 2 years ago I became an active in volunteering and working towards the election of President Barack Obama. I believe he represents intolerance to bigotry and unfairness. I believe he is a human being. I see that as a strength and not a weakness. I believe in him as a leader and honor his openness and clarity of speech. I feel he asks no more of us than he asks of himself. That’s what I believe in.

This crisis has allowed me to grow and understand spirituality. Not the spirituality that you seek from others, things or churches, but the one that is within you. I believe that one thought can change the world… and it starts with you. Most of all I have gained a deep sense of grounding and acceptance that comes from getting down on your knees and realizing that from difficult times you can grow.

I learned that I could break through fear, anxiety and hopelessness and transform myself in to a more open and loving person.

I wake up everyday thanking God that I am alive and I go to bed every night fighting sleep wishing the day would not end. I am ready for whatever life delivers and I hope that I will be able to accept what comes my way with dignity, courage, introspection and perspective.

I hope that rather than paddle like mad under the surface; I will float gracefully like a leaf. A river has it’s own current and it’s constantly changing. As a river is unpredictable I have taken great comfort in not knowing the next step. Just float and enjoy the adventure.

About the Author:
Marcy Clapp

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