Name: Carly-Jay Metcalfe
Tell me about the person who died:
I grew up with the genetic disease cystic fibrosis and as of this year, have lost around 75 friends to it. I lost my first “best friend,” Ineka, on September 9, 1988, when I was eleven. The day before she died, I was allowed into the “dying room,” as we all called it, where I was able to sit with Ineka as she lay dying. I remember walking into the room; she was lying on her right side. She knew who I was and tried to whisper my name, but I just said, “Shh, you don't have to talk. I love you so much,” to which she replied, “I love you, too.” To have that love reflected back to me is something that will always be with me. Ineka and I were very close, though she was four years older than me.
I still have a photo of Ineka on my shelf today. If I had a photo of every person I'd lost to cystic fibrosis, I'd have no wall space.
Tell me about an object that reminds you of the person who died, and why?
Ine's mum, Trish, was a brilliant knitter, and I remember watching her create this beautiful purple cardigan for Ine about eighteen months before she died. As I said my final goodbyes and “I love you’s" to my friend, I walked back into the tiny hospital ward kitchen where Trish presented me with Ineka's cardigan. Trish, my mum, and I came together in a loving embrace, all of us howling about the loss we were about to experience. I knew right then the profundity of Trish handing over the cardigan she had so lovingly made for her daughter, and that night and for many nights after, I slept with it. I still treasure Ineka's cardigan and it still fits me (thanks to the baggy look preferred in the 80’s).
What was your experience of grief like after your loss? How did it change over time?
Immense. Heavy like a sodden blanket, but I felt lighter when I had Ineka's cardigan with or on me. I used it for comfort, for calm and to feel ‘near’ her.
During this time, I wasn't complying with my medication regime or my twice daily physiotherapy. I was eleven, and wanted to be a kid without the burden of having an illness that I felt was out of my control. Also, being punched in the chest for physio is painful. I loathed having to take my medication at school because I was called a junkie, but to be honest, most of the time I would just forget because I was trying to live like a normal kid. A social worker hoodwinked Mum and Dad into believing that I was morbidly depressed, and needed to be admitted to the “Child and Family Therapy Unit,” which was just another term for the psychiatric ward. The social worker also thought that sleeping with Ineka's cardigan was abnormal, so it was taken away when I was admitted. But all I was doing was processing my grief just as I'd always done, in a very customary way for a child. Sleeping with Ine's cardigan made me feel close to her and as though my grief was something tangible, something that I could touch.
I was in this ward for just short of two weeks. My family could only see me at certain times of the day. My door always had to be open and I had to have supervised showers because I was on suicide watch. When my Dad’s brother Garth died, I remember being in the arts and crafts room when my Dad came in. I knew that Garth was in intensive care after a heart attack. The day he died, Dad marched in crying. I had never seen him cry before. I even remember what I was painting—a Donald Duck plaster cast—so when Dad walked around the corner with tears in his eyes, I knew we'd lost Garth. He broke me out there and then, and when he was questioned about when I'd be back, he said, “She's never fucking coming back to this place.”
If you had to describe your grief as a literal landscape, what would it look like and feel like at different points in your journey?
It was like a thick, gelatinous river, struggling to make its way through a pinprick of a hole in a mountain. I seemed to sink and climb deeper into myself with each death. I’ve always appreciated the allegory of drowning, in that this is what happens with CF. You essentially drown in your own mucous.
Something broke within me when I lost Ineka. Death breaks you open in a way where you can never be the same again. The deaths wouldn’t let up, which felt like a cannonball puncturing my spirit each time. I felt quite alone in my grief, unless I was talking about it with my CF friends. None of the children at my school (barring one lovely girl who is still my best friend) were aware of the losses I was experiencing, though my teachers knew and were always very kind to me.
Did anything surprise you about your experience with grief?
Ineka’s death solidified the fact that I could die at any time from this disease. Even though I was quite healthy in terms of my CF, I seemed to be in hospital constantly. Ineka felt like a watershed moment, in that I lost dozens of friends after she died. It was as though Ineka had been the starting point—the lesson—and then everyone seemed to die. I have a photo that was taken when I was seven at a CF camp, and by the time I was 13, everyone in that photo was dead. It wasn’t a wake up call, as such, just another reminder of how insidious this disease could be.
How did the people in your life support you in your grief? What was helpful? What was frustrating?
It was so important that I was surrounded by my CF tribe, because they were the only ones who truly understood—at least, that was what I thought at the time. Looking back, I can see how my mum really suffered the loss of Ineka, as did my sister—a lot of my friends were her friends too, and I believe that Mum felt a responsibility with some of my friends to be there when their own parents couldn’t, whether physically or emotionally.
I look back now and feel very selfish about my grief, because my whole family was feeling it—even my Dad, as much as he may have trouble admitting it due to his stoicism. Whether the deaths were a reminder that I may have a shortened life span, or because of the suffering, I know it affected my family greatly.
How did people who were grieving the same person respond to the death compared to you? What similarities and differences did you notice?
When I would speak to my friends about how they felt, it was interesting to gauge their emotions. I was always a very curious little girl, and this made me more curious and so that’s when I started my first social experiment with grief. I didn’t write things down, as I usually did, because I felt that was a betrayal of my friends’ trust, but I kept everyone’s responses in my head and heart. There was a consistent thread of sadness, shock and disbelief (even though the deaths were often “expected”), and worry for other friends who were seemingly edging towards death. I would have to say overwhelming sadness was the emotion that united us.
How did your private grieving relate to your public mourning?
As a child and an adolescent, I was a private griever. While I was fearless in my nature, I always felt vulnerable and weak when I manifested my grief in a physical sense, such as crying. I thought it was up to me to be strong, and so my public grief response was a façade, whereas when I grieved in private, I’d always lock the door or ensure it was a dark place so that no one could see me crying. Even when I was on my own, there was always a degree of shame when I cried.
That's something that's only changed within the last five years. I am now an out and proud crier. I have reclaimed my tears and grief and have spun them into gold, and feel much lighter in my being. Writing over 100,000 words of my memoir while doing some really hard spiritual work has healed me to a point. I do not believe that time heals all wounds though; it numbs them, and you learn to live around the sadness.
Was there anything about your cultural or religious background that affected the grieving process for you?
In the 80’s and 90’s, there wasn’t a funeral I went to that didn’t have some injection of “God” and the scriptures, whether it was the Lord’s Prayer or singing a well-known hymn like “Amazing Grace.”
I always felt cheated on behalf of my friends when a priest launched into a religious diatribe, because my friends and I had talked about death, but never had they mentioned religion. Then again, perhaps that was a private thing for them.
Ineka planned her own funeral and it was the most beautiful funeral I’ve ever been to. I remember being surrounded by an abundance of blooms, as well as a palpable love and light. It was a celebration of her life, which is what Ine wanted. Of course, a great sadness pervaded the event, but there was an overwhelming sense of love on that day where everyone had come together to truly honour her life. She also wrote her own epitaph, which says, “Don't be too sad—just remember me at my best.”
Carly-Jay Metcalfe is an Australian based writer of literary fiction, poetry and memoir. She is also a death midwife and secular pastoral carer. Fragments of her life and work can be found at www.bruisesyoucantouch.com and www.carlyjaymetcalfe.com. In 2014, Carly-Jay spoke at TEDx Brisbane https://www.youtube.com/watch?v=AYaBlW9sSYQ
This post is part of Grief Landscapes, an evolving art project documenting the unique terrain of people’s grief. Participants share an experience with bereavement, and I then photograph an object that evokes the person who died, transforming it into an abstract landscape inspired by the story. I’m accepting submissions until June 15th, 2016. Learn more about the project, share widely, and submit your story. - Mindy Stricke