by Glen Nielsen
I am going to describe my journey as a stepfather over almost two decades, from August 1980 to the present. I am a step-parent who has experienced the death of a child. My story may be different from many of yours in that the death was a long-term illness, which, while it had some very difficult aspects, also offered some unique opportunities for really developing a very close relationship and for closure.
In 1980, I discovered a very special gift. I met Lisa for the first time as a 14-year-old just coming home from camp. I immediately knew that we would get along when Lisa let her zany sense of humor come through on our first meeting. Lisa was genuinely happy about her mother Linda and my marriage. In the early part of our relationship, Lisa considered me more like a big brother than a “father”.
As time passed, we became closer and shared some very special times. When it came time for learning to drive, I was elected to be the teacher. I became very proud of Lisa, her accomplishments and admired her sense of determination and character. I knew that a very special bond had been made even though neither Lisa nor I was very demonstrative. We had managed to avoid many of the problems typical of step parent – child relationships as well as many of the normal problems with the teen years. Most of that was due to Lisa’s maturity.
In 1983, the real challenges began
In 1983, Lisa had really started to blossom and feel good about herself. The only problem she had were severe headaches. When her eye started to cross, I took her to an ophthalmologist, who told me to take her to a neurologist immediately. After the CAT scan in the neurologist’s office, I was called into the doctor’s office to see the scan and get the bad news; a very large brain tumor that would require immediate surgery. The doctor later added “she is terminal.” As her mother was being told the devastating news by the doctor, I knew that my job as a parent was to tell this 17-year-old high school junior that she had a brain tumor. I knew that I would have to learn a lot of new coping skills quickly to face the challenges ahead. I was afraid that I would not be up to it. Lisa always seemed to make being a parent easy though, and if she could cope with a very serious life-threatening health problem, then I would have to learn how to be a positive support to her. There was no other option since I now loved her as if she were my own flesh and blood.
A labor of love
As Lisa was waking up from the anesthesia in Recovery after the seven-hour brain surgery, I put my hand on Lisa’s arm and said, “poor Lisa.” She looked up at me and said, “If you don’t stop patronizing me I’m going to punch you.” Tears of happiness came to my eyes at such a sassy response. Lisa had come out unscathed.
Lisa and I became even closer. I knew that she loved me and considered me as a father. The neurosurgeon had told us that she would be dead in two weeks without the surgery but might have nine months with the surgery. We tried to focus on positive things and maintain a normal life as Lisa proceeded to complete her senior year in high school. She became sick from food and lost her hair from the massive doses of radiation. Somehow, a year after being told that she had nine months to live, she graduated from high school and had become a National Merit Finalist. I felt incredibly proud and happy that my Lisa was beating the odds.
Lisa had to drop out of her first semester of college due to a bad seizure and fall. After she was at home, we enrolled her in a local college, where she lived on campus and had a good semester before the tumor came back and required a second surgery in December of 1985. She again came out of surgery unscathed and she resumed her college career with dreams of becoming a veterinarian. The tumor again started to come back, and we were again told that there was no hope and she would just get worse. I no longer believed this because I had seen her prove the medical establishment wrong several times before and because this simply could not happen to Lisa. Linda, Lisa, and I were a team working together and our whole life’s purpose was centered around getting Lisa back to health.
After we found an unconventional treatment in New York, Lisa did indeed turn around again. The seizures stopped and the imbalance and partial paralysis disappeared. This was not supposed to be possible according to the doctors. Lisa again resumed her college classes. I now felt that she was going to make it.
Unfortunately, the remarkable remission lasted for only about six months. Lisa gradually began to lose her eyesight. This devastating blow took much of the wind from her sails, and it became much more difficult to lift her spirits.
She finally became bedridden in March of 1988. When Lisa went into a coma in May, I was determined to remain positive. Just before Mother’s Day, Lisa again rebounded and came out of the coma. She was mentally fine but physically was getting worse. I was still confident that this illness could somehow be turned around.
I was a little angry with my wife, Linda, when she said she knew Lisa was going to die. I was not ready to accept it yet. It was not until about a week before she died that I realized that I was not being a good parent if I kept holding on to Lisa. She was certainly holding on for Linda and me. The time had come to say those things that needed to be said but may not have been said. We knew that we had to tell Lisa that it was OK to go. How could I possibly make myself tell my Lisa that and mean it? How could I not?
I told Lisa that it was OK to stop fighting if she wanted to and we would be OK. I told her not to worry about her mother because I would take care of her. Little did I know how hard our promise to go on would be.
We had been burning the candle at both ends and were used to tremendous ups and downs. It was always easy to be motivated to learn ways to cope with Lisa’s illness because it involved protecting and helping Lisa. This had been our life’s purpose the last several years. What do I do with myself now and what would be my motivation to learn skills for coping with her death? A couple of months after Lisa’s death, Linda and I had an appointment together with a psychologist who saw many patients for grief issues. Linda described in detail the overwhelming and extreme emotions which she had to the point of feeling like she was going “crazy.” I added my thoughts and insight on Linda’s difficulty in coping. The psychologist assured us both that this was perfectly normal and Linda was actually dealing with her grief very well in spite of the fact that she did not feel like she was. The psychologist then turned to me and said “you on the other hand, I am a little worried about. I am afraid that you not grieving or coping with your own feelings and are merely focusing on helping Linda.” About a month later, I became ill with a cold which I could not seem to shake and then developed pneumonia. I knew that my unusual difficulty overcoming these physical problems was due to depression and that the psychologist was right; I was not really “coping” but was avoiding grief. By all outward appearances, I looked like the strong and “normal” one. At work, people would ask me how my wife was doing and I would answer them by saying that she was having a hard time. It became clear that my methods of dealing with life and grief (or avoiding it) were not working and some new skills had to be learned.
Linda seemed to have a better feel for what she needed and found out about all of the area self-help support groups like The Compassionate Friends. I went to these support groups to support her. It was a surprise when I discovered that the negative emotion which got stirred up at these meetings was actually what I needed to bring to the surface so I could begin to acknowledge and work through them. Another surprise was my inability to acquire any useful coping skills from books. I had expected that finding the right “formula” for coping with grief would be a logical process I would be able to figure out step-by-step. I came to the conclusion that I had to discover my own “formula” for coping which was unique for me. The answers which would be most helpful would have to come from within.
Linda and I, along with another couple, started a satellite group under the Compassionate Friends for parents like us who had no surviving children. This group became a very special part of our healing. There was no other place or group where we felt as comfortable. Linda became convinced that a national conference for parents like us would provide even more opportunities to connect and network with others. In Loving Memory was incorporated in 1992 to put on the first conference which was held in September 1993, over the five-year anniversary of Lisa’s death. This was our new labor of love to honor Lisa. As with this conference, there is an incredible amount of pain on the faces of the participants, but there is also an incredible amount of love that can be felt; the love for our children.
At about the five-year mark, I began to realize that my memories of Lisa were more often positive ones. This contrasted with the early times when my memories often included some of the very difficult times of her illness. I realized that I had not been standing still but was actually moving forward. My work with In Loving Memory was helping me. I was able to feel at times that I was helping others even though I knew that I was really helping myself.
The conference which seemed to evoke the most emotion from me was the third conference in Indianapolis in 1997. It hit me like a ton of bricks, how much I missed Lisa. This took me by surprise because it had now been more than eight years since her death.
More than a decade has passed! I cannot believe it has been over 11 years. There are still mixed emotions at times, but Lisa’s memory now usually brings a smile to my face and I have no fear whatsoever of forgetting her. I can feel the love strongly as ever. One regret about how we handled the death arrangements is that we only put a small obituary in the paper which did not tell anything about Lisa. This was on the advice of the funeral director who felt it would be too expensive.
For her 10th anniversary, September 2, 1998, we decided to put a picture and something Linda wrote about Lisa in The Washington Post. This notice In Memoriam was important to us to remind others that Lisa is still a part of our lives and to finally acknowledge Lisa’s death officially the way we wanted to originally. The notice written by Linda was as follows:
It has been 3,650 days since she made her earthly transition. The bond between us remains unbroken ~ an everlasting link through eternity. We whisper Lisa and she appears in a butterfly’s dance, the kiss of a gentle breeze or a soft spring rain. Her love continues to surround and inspire us. Lisa maintained her grace, dignity and wacky sense of humor through 5-1/2 years of living with brain cancer. We envision our cherished daughter and only child, free from all encumbrances ~ running like the horses she loved, sight restored and hair flying. Pop Bear and Mom Cat
I have come to understand that most real healing I do results from some expression of my love for Lisa. When I feel that I am doing something in her honor, I end up feeling good about it and am involved in life, not just going through the motions. My own “formula” for healing continues to evolve but I would currently describe it in the following way:
1. Recognize, acknowledge, and experience the pain and other negative emotions in order to work through them. Also recognize and acknowledge the love and the need for change in myself (coping skills) in order to focus and channel that love.
2. Recognize and acknowledge the pain and love in others – we are not alone.
3. Decide to use the love energy to reinvest in honor of Lisa. I must put myself in a position to help others in order to honor Lisa and help myself.
This formula is easier to say than to do, but I am helped immeasurably when I am in the process of following it, and am usually doing less well when I am not. Lisa continues to be a very important part of my life in many positive ways and for that I am very grateful.
Glen Nielsen, Lisa’s Pop Bear, Reston, VA
About the Author: Glen Nielsen is retired from a federal government agency after 32 years of service. Glen enjoys hiking and other outdoor activities, challenging his mind with Sudoku puzzles, and is an enthusiastic Washington Redskins fan. Talented at remodeling, he has completely redone the kitchen and two bathrooms as well as other projects around the house. Glen is a kind and compassionate man who has helped numerous bereaved parents for many years. He and his wife, Linda, live in Reston, Virginia.