Honesty at Last

After that initial therapy appointment I did a lot of processing of how I had or hadn't dealt with my genuine emotions. It was then I realized I had been hiding my true feelings since returning from New York. What had happened to make me believe it was not acceptable to be open and honest? Dr. Reese? My family? The classmates at school? The baker behind the counter? I couldn't begin to untangle the web encasing my people pleasing behaviors, but I was ready to admit how stuck I had become. I was in my twenties, and yet I continued to exhibit the same "acceptable" reactions as when I was seven. What is your definition of being unable to move emotionally forward? I felt now was the time to closely examine, develop and expand my level of emotional wisdom. With the help of my therapist, I set out do just that.

Dealing with conflict had always been challenging for me, so facing the prospect of being honest with my mom was beyond difficult. I felt the first step must be inviting all authentic feelings to emerge from the darkness of my fear, and this I did with my therapist. These genuine thoughts and feelings hopefully could then lead to the expansion of my emotional growth. Before this could happen, developing a sense of courage was needed in order to broach the topic of honesty with Mom. Loving my mom as deeply as I did meant I was afraid of hurting her feelings, or giving her the impression I didn't appreciate all that she had done with me and for me over the years, but I also knew the importance of finally having my true feelings validated after all those years. The day of the dialogue between my eyes, it came through loud and clear how crucial it was for me to share my side of the emotional ordeal of losing the vision in an eye. I continually reminded myself of the sorrow and grief those tears represented because I was afraid it would be too easy to slip back into my familiar pattern of hiding, ignoring, eating or joking my anguish into silence again.

Since Mom and I talked almost every weekend, I wanted to begin our sharing as soon as this Saturday. I almost felt a sense of urgency to call forth my newly discovered courage and begin this journey with my mom before I would get cold feet. I remember visualizing how this initial conversation might open with a fun little chat about Jessica's social activities with friends. I even had a short impromptu rehearsal for myself because often when I'd be nervous I'd have trouble staying on task and my attention could easily shift away from the core of my intended message. I now understood the essential element of honesty in our upcoming conversations. I know, I know, long distance was not the best way to enter into a communication on this heart level, but I felt this needed to begin soon. This was my reason for refusing to wait two or three months until our next visit to Madison.

I took a deep breath and dialed her number...

Interrupted Calm

Our life was clicking right along with lots of fun times getting to know new places and people. My job was everything I had wanted. Many more children than initially expected were enrolled in the Montessori school, making it necessary to hire two teachers. Working with a co-teacher was easy because we shared a common style and communicated well with each other. The pay wasn't fantastic, but Jessica and I found we didn't have expensive needs, so it was a good fit for us. We missed our friends and family from Madison, so we tried to go back for visits as often as possible. We also did a lot of letter writing since this was pre-Internet, texting, Facebook and Twitter. Long distance phone calls, which were quite expensive at that time, were kept to a minimum.

For several months I felt no pressure or anxiety . Our emphasis was on acclimating ourselves to the new environment in which we were living and adjusting to our new routine. I felt as though I could finally let out a long overdue exhale after the stress of the past several years. At last Jessica and I were able to experience the benefits of our planning, goal-setting and hard work, and we were enjoying it together. What a refreshing way to live, and I wanted this to last forever. Of course it didn't, but even as fear began to creep back into my days, I continued to cherish every bit of the feeling of my accomplishments over the past years.

Fear was a red flag, an invitation for me to take a closer look at what was going on in my life. I thought this may possibly allow me to pinpoint the cause, but I came up empty. Why would this enter my life at a time I was experiencing a solid sense of achievement and success? A friend suggested going to a therapist. I was uncertain about her suggestion because I had never before considered that as an option. Why would I ever have needed a therapist when I had my trusty Pandora's Box?

Being away from the support of my family, I felt I should go to someone who could help me figure out what had happened to cause this shift in my emotional life. I found a female therapist who made me comfortable at our first appointment, so I felt in capable hands. She asked many questions about my past to help her more fully understand me. As I answered her questions, I began to more fully comprehend the complexity of my life. After sharing the highlights and the lowlights, she asked how I had dealt with my feelings after losing the vision in one eye. I must have looked perplexed as I asked her, "What do you mean? What feelings?" She then asked me to close both eyes and have the eye with vision speak to the eye without vision. I hesitated for a long time because I felt a bit ridiculous speaking for my eyes. With a little encouragement though, I was able to begin. It didn't take long for the tears to begin flowing down my cheeks. It was the very first time I was able to get in touch with my feelings of genuine sadness and loss. Where had all deep emotions been stored for those many years? In Pandora's Box? Someplace in my body? I couldn't answer that question, but one thing I did know for sure...it was about time for me to begin opening wide the windows of my feelings and airing out all the unexpressed emotions that had been kept under wraps too long.

Single Parent Life

Moving back in with my parents during the divorce was helpful in many ways. They provided us with a safe and comfortable place to live while I dealt with the loss of a marriage. Initially it felt like a part of my chest had been ripped open, leaving me with a gaping hole where my love and trust had resided. I remember the exact minute I realized there could be happiness beyond the grief consuming me since the end of my marriage. Jessica and I were outside sledding down the hill in our yard after a typical December snowfall. We both flew off the sled in the middle of a bump, landing face-down in a pile of snow. We shared a burst of spontaneous laughter, and it was at that moment I suddenly recognized the true beauty of the experience. It had been many months since I felt a joy as pure as this.

With no teaching jobs available in the pubic schools and having a child I needed to support, I wasn't sure what direction to take so I could begin earning money. While in college I had been hired as an assistant in a Montessori classroom, and I returned to that position after my divorce. I had admired Montessori's belief of how young children learn, so I quickly accepted an offer to return to school for one year, earning a teaching certificate from the International Montessori Institute. It was a big commitment because the training center was located in Milwaukee, and I would be making a daily commute back and forth for a year. Upon certification though, I knew I would be able to get a job and follow by passion...teaching. After receiving the funds I needed, my mom and dad offered to pick up Jessica from day care and be with her until I arrived home each day from class. Everything was in place as the school year began. What a year!

Being a full time student and single parent was a challenge, but with the support of my family it all worked. The most difficult adjustment for me was leaving my young daughter at the day care every morning as I left for class. While saying our good-byes one day, Jessica very softly said, "Mommy, I know you don't want to leave me here, but you need to go to school far away and I can't go with you. I'll be okay, Mommy." I cried most of the way to Milwaukee. Keeping focused on my goal of gaining financial independence and being able to support Jessica made this short-term sacrifice worthwhile.

Upon completion of my classwork, I received a job offer in Minneapolis. I felt a mixture of fear and excitement as I was about to embark on a new job in a new city with my daughter. This was my first experience living away from my hometown and the emotional support of my family, but I felt this was the right choice for all of us. I laugh now when I remember the interesting set of furniture we used in our apartment. Looking around, it may have seemed as though we were hosting an indoor garage sale because there were random pieces throughout the rooms, with nothing matching or coordinating. We had assembled it from the donations made to us by our family or friends. None of that mattered though, because we had the most important piece any home could possess...love!

After arranging our living room, I was in the kitchen unpacking dishes when Jessica called for me to come right away. Horrified, she announced, "Mommy, the television is broken, and the color is all gone." I had to gently explain that Grandma and Grandpa had a color television in their house, but ours was black and white. Yes, we both had a period of adjustment, but we came to understand how special it was that we were able to make these minor adjustments together. That year our Christmas tree was decorated with ornaments purchased at the local Ben Franklin store. Today, almost thirty-five years later, I continue to use those ornaments on my tree as a reminder that the true essence of beauty is simply love.

Aquiring Courage

As each year passed, I became further and further removed from the word cancer. I continued dealing with my need to be hyper-aware of looking at people from the correct angle, but the actual fear that I had experienced with the surgery and treatment slowly began to fade into an isolated memory from my past. Since I no longer had the need to implore for a cancer cure, my relationship with God also faded in importance. Where was my authentic gratitude? It was sadly missing from my vocabulary, although I felt grateful after each good report and did give thanks in a quick superficial manner. It's difficult for me to look back and admit to myself and others that the relationship with God had been built purely on a foundation of need. I truly had no idea what I was missing. This meant I was left with only food and humor as my daily allies, and don't forget about my updated version of Pandora's Box.

By the time I entered college, I was only focused on meeting new friends and getting a degree in education. I made a conscious decision to put cancer into Pandora's Box where I wouldn't have to think about it or be reminded of the fear and pain it had caused me. As long as my secret was safe, I could be a normal college student with the normal concerns associated with college life. I began dating someone seriously, and within a few months he was drafted out of the university and into the army because of the war in Vietnam. Since this was the first deeply meaningful connection I had experienced, I was willing to work on keeping our bond intact while he served. During this time, it was not easy to have limited time together, but in my senior year he was discharged and we were able to resume our daily relationship. Soon after his return, we were engaged and busily planning our wedding. I was filled with joy and anticipation.

Jumping into a marriage so quickly after our years apart was not the best decision I ever made. It didn't take us long to discover that we did not share the same goals for the future. Mom and Dad had witnessed the differences between us, and both warned me to slow down before making a lifetime commitment, but I believed they were wrong. I felt they didn't understand the love we shared. Another thing they didn't know was that a few weeks before our wedding day, I found out I was pregnant. I didn't possess the courage to tell them this news. I trusted the strength of our union. Hindsight is 20/20...right?

After the birth of Jessica, it was difficult for my husband to understand this fresh life we had created required a lot of time and energy. Our baby was a new responsibility and I took it very seriously, fulfilling her basic needs with a depth of love I had never encountered. In a short time I came to understand my desire to live a conventional life, while my husband was more interested in continuing a life with a minimum of long-term restrictions on his energy, as well as a freedom to use his time as he chose. This time I did have the courage to speak the truth and admit my mistake. I became a single parent, creating a life with my daughter. This was the most difficult and yet finest choice of my entire life, a choice I have never regretted.

High School Years

High school can be a difficult time for anyone struggling with issues of self-esteem, and I'm sure it's no surprise to you that I fit into that category. I don't want to leave you with the impression that every minute was filled with angst because I experienced many fun-filled hours with my old and new friends, but during those four years I did feel the need to trade up to a larger more efficient Pandora's Box. What had competently stored all my genuine feelings and thoughts throughout elementary and middle school was incapable of dealing with the sudden onslaught of all the overpowering feelings brought on by my high school experiences.

Before the beginning of freshman year, I also tried developing a thicker skin in terms of my overly emotional reactions to comments and/or situations involving social aspects of my life. It meant that I had to construct a thicker protective wall surrounding myself and my feelings, which in turn provided me with a set of emotions that could not as easily be penetrated. Once this was accomplished, I was ready to head into the next part of my journey.

Our family life during this time was also full of new discoveries as my dad fell deeper and deeper into the grip of alcoholism. That disease overtook Dad's life with a power that was hard to understand and accept. He was helpless in his attempts to control its hold. It was more than painful to watch the dad that we so loved turn into a man we barely recognized. As a family we tried to hide the devastation from our neighbors because initially that was all we knew to do. There were countless episodes with Dad's drinking that caused me sadness, shame and embarrassment, but now I realize those feelings stemmed from lack of education and understanding on my part.

Eventually our family was introduced to Alcoholics Anonymous. Before this, I felt like Dad was choosing to drink because he was too weak to avoid it, but with the help of AA, our family began to learn that it was not a weakness, but a disease causing Dad the loss of his ability to gain control over the alcohol. There were many painful years, during which Mom needed extra help with all that goes into keeping a family together during times of stress. It offered me an opportunity to begin paying her back, showing the deep appreciation and love I felt for the major support she had provided me in my time of crisis. Our entire family unit grew closer and our bond grew stronger during these years, and we each moved forward in life with a deeper appreciation of what is involved in being a true member of a family. I am delighted to let you know that with the help of AA, along with the loving support of his family, friends and above all his Higher Power, Dad became a recovering alcoholic, returning to the man we loved and admired.

Every five or ten years I am reminded about my high school class reunion. I admit there is a small part of me that envies those who actually look forward to these events. Then I wonder how can they find enjoyment seeing so many people they may vaguely remember, having little in common except the fact that they all spent the same four years attending classes at the same high school together? My high school reunions are almost the last place I would choose to spend an entire weekend of my life. I already keep in touch with the friends I had authentically connected with all those years ago, and I cringe at the mere idea of mingling with all the rest of my classmates in a superficial level of conversation. To me it would be a reminder of a time in my life that was filled with growing pains and secrets that were better kept under wrap, or better yet in my Pandora's Box. I may be in the minority, but high school is definitely not in my top ten list of the best times of my life, and I would rather spend the weekend celebrating my life as it is today.

Life After Treatment

The day I was released from my final radiation and TEM treatment, I remember a feeling of total freedom. As we boarded the bus for our trip home, I was breathing a different air that was filled with a new-found taste of anticipation. What would life look like now that I didn't have this enormous fear as my daily companion?

I returned to Madison with an imaginary pink eraser in my hand, ready to erase the word cancer from my vocabulary. It had darkened my life for long enough, and now was the time to say good-bye to it. I understood my continued need for blood work on a regular basis, but in my heart I felt like that was merely a short-term requirement I needed to complete before crossing the finish line in my relay for life.

I returned to school with my ever-present quiet friends...food, humor and God. Each was called upon at special times and for distinctively different reasons. In the morning I would greet God with the familiar prayer to keep me safe from insults and cruel comments from my fellow students, as well as continued good health. I would then eat a breakfast rich in sweet insulation, providing me with a gentle dose of sheer pleasure, making any difficult assignment or situation at school easier to handle. Of course, I would need another application of this "medication" throughout the day. After these two friends had been properly greeted and consumed, I would quickly wrap myself with my armor of humor and goodness and head out the door to school. No wonder I would occasionally feel exhausted before my school day would even begin!

During this time I had many friends, most of whom were females. It was difficult being friends with boys since not only did I look different, but I was also restricted in the amount of physical activity in which I was allowed to participate. You see, I had a radiation burn on the side of my forehead that limited me in my exposure to sunlight and body heat. It wasn't easy trying to explain that limitation to my young classmates. That made it more difficult to continue in my attempt to stay below the radar because it made me feel obviously different in yet another way. I may have been cancer-free, but I was weighted down by my self-concept. Where was a therapist or counselor when I seriously could have used the assistance?

I'm not asking for a pity party, but can you imagine how I felt when one of the boys in our eighth grade class decided to have the first girl-boy party and he invited all of my girl friends, but failed to include me? Our teacher took me aside to delicately explain how surprised she was to realize that I was the only one from my circle of friends to be excluded. No amount of humor, food or compassion could begin to medicate the degree of pain I felt.

Was it any wonder that by the time I entered high school I had developed a strong sense of what I needed to survive?

An Impossible Challenge to Win

On one of my final trips back to Columbia Presbyterian Hospital I had my usual radiation and TEM treatments. For some reason I felt an extreme anxiety about needing to stay at the hospital for a few days, so I had a serious talk with the doctors about being allowed to recuperate at the apartment instead of the hospital. Their initial response was negative, but having known these doctors for years, I had the necessary nerve to implore them to at least reconsider. They left the room and when they returned a few minutes later they made a "deal" with me. I listened with intense interest as they laid out the rules for me to accept or reject. All I needed to do was show them that I had the ability to maintain a calm stomach (no vomiting) for only four hours. They warned me that this would be an impossible task, but I paid no attention to that detail because I knew that if I was successful, I would be released and therefore allowed to go with Mom back to the apartment. I immediately accepted the challenge, feeling nothing but confidence in my ability to win. I have a crystal-clear memory of sitting on the edge of the bed with my attention focused on the large wall clock on the opposite side of the room.

It didn't take long for me to realise that I might have reason to doubt my confidence. Within the first hour, the ever-dreaded nausea took a solid hold of my entire being. But due to my desperation, I would not give in without a valiant effort! Within minutes of the onslaught of the nausea, I lost all the contents of my stomach (a nice way of describing vomit). I was ready to accept defeat, when suddenly I considered the possibility of renegotiating our agreement. I had the quick suggestion that we could reset the time in order to start over. You see, I figured that since I had already lost everything in my stomach, there may be nothing left to lose (another nice way of describing vomit). The doctors were willing to accept my proposal. Lucky me! I had another chance to succeed.

I'm quite certain that you have already figured out the ending to this chapter of my journey. You're correct if your assumption was that I had no chance of winning this challenge. Yes, I had a three-night stay in my hospital bed...sad but true. The powerful strength of nausea may have won back then, but while looking back at the memory, I can't help but have a quiet smile within as I touch into the fact that I also had a powerful strength within me to fight for what I needed. What I had originally considered as another heartbreaking example of my wretched sense of desperation as a fear-filled little girl, was in truth an early example of the power and sense of growth and determination I possessed. Believe me, these traits would play an important part in my journey with LIVING.

Oral Roberts?? Really?!

As a kid, I didn't have the patience to wait for my pleas to be answered, so I took it upon myself to look for my own solution. I was watching television one Sunday morning and I saw a man named Oral Roberts. As I watched his show I learned he was a serious preacher who believed in providing his followers with whatever type of miracle they needed. I was fascinated with his spellbinding promises and mesmerized by his unusual approach to healing. He invited any of the people in his congregation who needed a prayer to be answered, to merely step forward and he would personally lay his hand on the person's head while he contacted God with the request. I observed person after person approaching him and quickly being healed of their illness or frailty. I was amazed and completely curious! At one point he turned to the camera and invited his viewing audience to put a hand on the screen and merely request to be healed. I felt hesitant and a bit apprehensive as I carefully turned around to make certain that no one from my family saw me as I placed my right hand on the screen. I waited for a burst of light to pour into the room announcing the miracle to be granted. I kept waiting, waiting, waiting until I thought that maybe I had placed the wrong hand on the screen, so I put up my left hand...still nothing. As I dropped my hand down, I felt betrayed. Who could I blame? Oral Roberts? God? Me? I quickly clicked off television and never turned on that show again. I felt a bit foolish for hoping that a cure for cancer would happen by simply touching a TV screen, but isn't it a pointedly sad illustration of the true depth of my desperation?

All of our family struggles did seem to bring us together with a special bond built on the solid foundation of survival and determination. Facing each challenge with Dad's drinking or Mary's physical or mental needs, we would gather together and tackle the obstacle with as much of a united front as possible, Mom always leading. Her powerful faith was the main glue that kept us happy and focused on the positive aspects of life. Mom shared her faith with each of us on a daily basis, and we followed her model as dutiful children.

During this time, my relationship with the Catholic religion was growing and developing, while becoming a major part of my daily life. I was enrolled in a parochial elementary and middle school, so I had the opportunity throughout my formative years to learn all the policies and principles of the Roman Catholic Church. I took it all quite seriously as I attempted to faithfully follow each set of guidelines as it would be presented. I was trying to lead my life based on all the facts I had to memorize from the Baltimore Catechism. What an effective way to show God how worthy I was! Throughout these years I continued to feel like a freak, but I was becoming more calloused to the way I would let it affect my outward attitude. Remember, I could easily calm the hurt and pain with food or humor. My Pandora's Box was also never far from my reach. These coping techniques were successful for numerous years. Although once I remember wondering what would ever happen if Pandora's Box was ever opened and exposed. Indeed!

A Closer Look Back

Before I continue with the next part of my journey, I believe it is important to take a step back and explain in more detail the root of some of my early feelings and beliefs. I have mentioned how protective I was of my mom, but it is time for me to say more about that level of defensive caring I felt. You see, after we returned to Madison from our six week stay in NYC, my dad slowly began drinking more and more to help deal with anxiety and stress. When my sister was born with Down's syndrome, this only added to all of our worries. What I secretly wondered to myself was, could the mental and physical upheaval of my illness have caused both of these situations to occur? Could the underlying causes of Mary's mental development and my dad's entry into the world of alcoholism be due to me? I took on a deep sense of guilt remorse and responsibility for possibly bringing all this tension, grief, sadness and turmoil to my family. What could I do to help contain the disruption I may have caused?

This was the beginning of my need and desire to protect Mom from as much pain as possible. My goal was to make myself available to help with Mary, run little errands or do almost anything else needed to make her day run as smoothly as possible. Anything except clean the house, since my sister Kathie was always the queen of cleaning, so why not let that be her domain? I would try not to disagree with Mom or cause silly fights with my siblings. Looking back, I think I felt the desire to let her know through my behavior and actions how sorry I was for causing so much worry and concern. Being quietly protective was my way of earning forgiveness for all the turmoil I had caused to our family. Now, as an adult, I realize my limited powers of insight and awareness were due to the fact that again I was attempting to understand adult issues through the mind and heart of a child.

Mom and I developed a special bond through our many trips to New York, and all that faced us with each trip. She had to answer some serious questions from me, and she had to choose her words carefully so that she wouldn't frighten me with her response. There was a little boy who had become my friend over visits when our treatment times overlapped, and I had begun to look forward to seeing him each time I arrived. But after two consecutive visits without seeing him, I asked Mom, "Where is Timmy?" She had to delicately explain that even though the doctors had worked hard to stop his tumor from growing, they weren't successful. When I still was unable to understand what she was trying to tell me about Timmy, she had to again choose her words carefully as she gently explained that he had died. I was shocked by fact that his little white spot could make him die!! It took many tears, long moments of quiet thinking and many hugs of comfort until I finally comprehended that those little white spots could be extremely serious!
I never again questioned Mom about any of my fellow patients who seemed to be missing. In reality, as my level of understanding of the scope and sequence of retinablastoma increased, my level of fear also increased. My prayers to God became more urgent and my need to prove my worthiness also increased. My, my, so much for one little mortal child to balance...but my strong faith assured me that my prayers would be heard. Heard? I not only wanted my peas to be heard, I also needed to have them granted so that I could lead a life without cancer and without paralyzing fear!!