- Hello Grief - http://www.hellogrief.org -

A Pain Unlike Any Other

[1]I am 57 years old and no stranger to loss. My first experience was when I was five years old. My father, Austin, abandoned my mother and me for reasons that are still unclear to me; I never saw my father again.  When I was fourteen, my mother discovered that he had died when I was eleven years old. On March 11,1994, my mother Sadie, died of a massive bacterial infection.

The death of my last surviving parent was extremely painful not only because my mother was a huge influence in my life, but also because I felt orphaned. In 1998, my supervisor and mentor, Don, died of cancer.  These three losses affected me greatly but I was able to survive them. The love of my mother more than compensated for the loss of my father. I was able to address the deaths of my mother and mentor based on traditional societal expectations that revolved around grief being time-limited, and the further expectation of life returning to “normal” after the grieving was done.

Of course, my life has had many joyful moments as well. I have been happily married since 1982, and been blessed with three wonderful children, two sons and one daughter. I have also been employed as an addiction professional for the past 26 years and am an adjunct professor in psychology and psychology child-life at Utica College. I have been blessed with great friends and family.  I also expected that my life would progress in a predictable and orderly fashion. When I died, I figured my children would mourn my death and have hopefully some fond remembrances of our relationship in the years to come. Of course, I also expected they would marry and in the process give me a few grandchildren to spoil rotten.

On May 26,2002, my world, as I knew it and assumed it would always be, changed forever. On that day, my 18-year-old daughter Jeannine was seen by our local oncologist who suspected that she had a rare type of cancer called alveolar rhabdomyosarcoma. The diagnosis was confirmed on June 2, 2002 at the Dana Farber Cancer Institute in Boston. Massachusetts. Jeannine learned that her cancer was Stage 4 with distant metastasis and bone marrow and lymph node involvement.  She was also informed that her cancer was incurable, and that her only chance for survival would be aggressive chemotherapy designed to put her cancer in remission until a cure could be found. The five-year survival rate for her type of cancer at that time was 10%, so our family knew it was going to be an uphill battle, and that the outcome was not likely to be a good one.

Jeannine’s diagnosis was confirmed exactly one month to the day after her daughter and my only grandchild Brianna Leigh was born. Jeannine had injured her right foot early in her pregnancy and it became progressively swollen. Her injury did not respond to traditional interventions, so an MRI was done shortly after Brianna was born. An undefined eight centimeter mass was discovered on the bottom of her foot.  The results of a subsequent biopsy were highly suggestive of cancer and triggered a referral to an oncologist.

Following her diagnosis, Jeannine, her significant other, and Brianna moved in with me, my wife Cheri and Jeannine’s two brothers, Dan and Matt.  Jeannine underwent six aggressive rounds of chemotherapy between June and October of 2002, which only put her cancer in 80% remission. The cancer eventually spread again throughout her body and Jeannine died on March 1, 2003 at home, at the age of 18. Hospice was involved with her care during the last several days of her life. Jeannine’s significant other and Brianna lived with us for four years after Jeannine’s death. They are both still a part of our lives today.

Sorrow makes us all children again – destroys all differences of intellect. The wisest know nothing.”

Ralph Waldo Emerson

The pain that I experienced after Jeannine died was unlike any other pain that I had experienced in my life.  During my early grief, which for me lasted about two and a half years, the daily pain I experienced was identical to the pain that occurs when one violently rips a scab off of an arm. I was also faced with the unenviable task of learning to negotiate a world that was terrifying and uncertain to me.  All of the assumptions that I had about life and death were shattered. Children are not supposed to die before their parents.

I was told by a therapist I know that it is normal to take inventory of our lives in our 40’s and determine how we wish to live the remainder of our years.  At 47 it wasn’t about taking inventory, it was about starting life at this new beginning.

I am now in the tenth year of my journey as a bereaved parent. I have progressed from the raw, debilitating pain of grief to the point where I have found joy and meaning as a result of the struggle with Jeannine’s death. My world will never be the same without my daughter’s physical presence; my journey will be lifelong. I have however learned to live with both joy and sadness in my life.   In the process, I have also discovered the power of love, faith and the enduring power of relationships.

Here are some of the lessons that I have learned… so far:

“She was no longer wrestling with the grief, but could sit down with it as a lasting companion
and make it a sharer in her thoughts.”
George Eliot

David J. Roberts became a bereaved parent after his daughter Jeannine died of cancer at the age of 18.  You can read more of his work here. [2]

Photo credit. [3]