In The Beginning
“My reason, judgment and all my defenses have dissolved, leaving me confused and terrified in a world suddenly turned strange.”
“He is like a beggar in winter, clawing through box after box of old coats, looking for one that fits.”
Tom Crider:Give Sorrow Words: A Father's Passage Through Grief(1996)
Since early 2003 I have embarked on a journey of enlightenment and discovery that has redefined me as a person and in the process has helped me become a more loving and spiritually centered person. There are days where I wish my redefinition of self hadn’t come at such a cost to my family and me. On May 26,2002, my then 18 year old daughter Jeannine was diagnosed with a rare and aggressive form of cancer called alveolar rhabdomyosarcoma, a disease that affected her connective muscle tissue. Jeannine had a stage four tumor with distant metastasis; the five-year survival rate for her type of cancer was 10%. We were told that there was no cure. On March 1,2003, about ten months after she was diagnosed, Jeannine died at home, with Hospice Services.
It was a gradual and sometimes imperfect process to get to a point in my journey where I can truly say that my perspective on death as changed. My values ,assumptions about the world and priorities changed drastically. I also discovered early on some of the unique challenges I faced being a male and grieving. The first time that being a male in grief was brought to my attention was during 2006. I was a member of a panel of individuals who had experienced catastrophic loss; each of us shared our own unique stories with an audience comprised of families and professionals. After the panel concluded, another male professional complimented me on my presentation and in the process stated: “not many men are able to do this.” I remember graciously accepting his compliments while thinking that what I was doing was simply not that big of a deal. I had extensive prior experience doing staff in service trainings, teaching at an undergraduate college and doing community presentations. It seemed logical to me that I would choose similar activities to honor Jeannine’s legacy while developing a renewed sense of purpose. However, his statements did make me more conscious of being a male in grief.
Upon further reflection, I discovered that there were two distinct events that reinforced for me the challenges of being a grieving male. One occurred during Jeannine’s illness and one occurred following her death. Shortly after one of Jeannine’s first chemotherapy treatments, her oncologist wrote an order for individual counseling for Jeannine and couples counseling for me and my wife Cheri. As a human service professional, I understood the need for quality support and therapy in crisis situations, so it made sense that, in our situation, follow up with a trained professional be recommended. The assigned therapist attempted to initiate a conversation with Jeannine as she was sleeping off the effects of her chemotherapy treatment. When Jeannine opted to stay sleeping (which in retrospect, was a good decision on her part), the therapist brought me and Cheri into a conference room where for the next half hour or so counseled Cheri while I watched. Not once did the therapist ask me what I was thinking or how I was holding up under the strain of having a terminally ill child. Being a male means (among other things) that we need to be strong, and protect our families from harm. This therapist pretty much validated those perceptions, through her lack of interaction with me. Needless to say, I did not go back for further “supportive” therapy and neither did Cheri.
The second event occurred approximately two years into my grief journey. I requested some private time with Sister Rose Troy, who was the facilitator for a bereaved parents support group that my wife Cheri discovered about six months after Jeannine died. I had stopped going to her support group for several months because I was tired of being a bereaved parent. I wanted things to be the way they were when Jeannine was alive. I told Sister Rose that I was angry with God for taking Jeannine away from us and that I frequently questioned His motives. I also told her that I felt that I didn’t do enough to prevent Jeannine’s death. Sister Rose validated my anger and feelings of powerlessness due to not being able to protect my daughter from death. She also asked me this question: “How do you know that God isn’t in as much pain as you are because of Jeannine?” I eventually concluded that God was in as much pain as I was and demonstrated this by consistently revealing signs of Jeannine’s presence, which allowed me to have a continued spiritual relationship with her. This revelation was the beginning of a change in my perspective on Jeannine’s death. I also with Sister Rose’s help, I began to realize that the “What if” questions I had about Jeannine’s death and otherwise questioning God’s motives was an exercise in futility. So I stopped asking questions, and once I did, the universe provided me with the answers that I needed to negotiate my grief. Lou Gehrig once said: “All the arguing in the world isn’t going to change the decision of the umpire.” For me the umpire I was God, and after two –and-a –half years I finally realized that His decision was final and not subject to review. As an aside, anger was the one emotion that I allowed to readily surface in the beginning; of my journey I have discovered that this is true for many men in grief. I believe that anger may be a safe emotion to publically express for males because it is consistent with the strong image that we are expected to portray to the outside world. Also our anger masks the expression of more painful emotions (sadness, hurt) that increase our vulnerability to the outside world.
My Experience Today
In the tenth year of my journey as a parent who has experienced the death of a child, I still can vividly recall the last 24 hours of Jeannine’s life. In early grief, the raw pain associated with reliving that day was similar to the pain of repeatedly having a sharp stick poked in my eye. I held Jeannine’s hand as she took her last breath. Today that pain has softened due to my realization that rather than being the last person to witness her death, I was the first person to help Jeannine transition to a new existence. In her new existence she has evolved into my teacher and spiritual guide. Our relationship is based solely on unconditional love.
Here are some observations from my journey:
Today, I don’t view myself as a bereaved male or father. I am a person who has experienced the death of a child. It is an experience that has redefined me as a father, husband, human services professional and college professor. The death of Jeannine is part of my total human experience. I have developed a great sense of peace and fulfillment knowing that Jeannine and I have a continued relationship and that her essence is embodied in my heart, soul and mind. That being said, the pain of Jeannine’s death will never completely go away for as long as I live. Our grief journeys are circular; we can experience the raw pain of grief at anytime. In many ways, my emotional pain serves as much of a teacher and guide as the spiritual lessons that I have learned from Jeannine and the universe. We can learn from everything, if we are open to it.