...WHERE DO WE GO WHEN WE DIE, SISTER?
If illness and death weren’t so taboo in American culture - and I don’t mean rampant religious speak of heaven and hell or afterlife, etc.- I mean the actuals of the body shutting down- then perhaps end of life might be far less haunting, traumatic and isolating. Why isn’t the reality of this natural process widely integrated into our teachings? We are all someday faced with it. With more understanding around the physical and emotional aspects of death, we might better receive and give love, compassion and support. We might have better coping skills. We might not feel so helpless and silenced in our grief. We might more easily find healing, closeness and deeper meaning in life.
In June of 2017 my sister Shayna was diagnosed with terminal brain cancer at the age of 35. Over 20 months the tumors spread from her brain to her spine, which the oncologist said was eventually “coated like cake with cancer”, before it erupted back in her brain rendering continued treatment unviable. In the four months preceding her death I lived with her, caring for her, being present with her as she traveled through the end of her life. These works illustrate the landscape of the indelible sister bond through terminal illness, as Shayna fought an impossible disease - coined "The Beast" in the Glioblastoma community. When we asked what her death might look like, what we should be prepared for- we were told that Shayna would likely start sleeping more and more and one day just not wake up. Instead, she went through every stage of a gradual death. One by one she lost all of all faculties - her memory, her ability to walk and speak, the ability to read color and sight in one eye- bedridden in her final weeks. The actualities of this end of life transition were nearly as traumatic as the fact of her illness and death. She died on February 22, 2019.
Not long after Shayna's diagnosis, she asked me "where do you think we go when we die, sister?"
Shayna, choking on her own vomit in the bathtub, suddenly unable to sit up independently. I prop her upright, hold her head over the trash can until the neusea subsides and then, as I bathe her: I'm so sad and sorry this is happening to you sister. I don't cry often these days, but here and now tears roll down my face. Shayna gives me a look and says: I know. Me to. She embraces me then, she's sitting in the shower chair and I am kneeling on the side of the tub and the water washes over us both.
When waiting is the ambush. (She's having seizures now. Hallucinations. Talking about packing her things and having to be somewere ... 3 days before her death: I have to get to the theatre! I have tickets, the show starts at 8! Of course she is bedridden and hasn't eaten more than a few bites of yogurt in a week and had maybe a half glass of water in that time. When will she die? How will she die? We are watching her transition and for 20 months, all else is unknown except this fact of her eventual death.)
Shayna died at 8:52PM. I arrived at 8:59PM. I ran up the stairs and crawled in the bed with her, wrapping my arms around her, expelling deep moaning sobs, like a wild animal trying to escape me. Her body was hot as I held her tightly. We undressed her and I lit white sage and candles as my mother washed her body. I then brewed rosewater from 50 cotton candy colored roses, applying the toner to her skin. On her we placed sage, juniper, eucalyptus and rosepetals, then wrapped her body in a sheet. The undertaker came to collect the body at 4AM. We heard the table thumping down each step and they rolled the body bag past us as we layed there on the couch, watching them cart her out. Shayna was there when I was born and I was there as she died. Seattle is such a beautiful place that I never want to see again.
Above Shayna's bed is a work a text art that reads: Happiness is not a destination, it's a way of life. During Shayna's illness I never heard her complain, she only cried a handful of times. She lived those words in a way I never could know or even understand. In the last month of Shayna's life as she experienced significant memory loss and began to lose nearly all physical capacity I asked her if she was depressed. She said: What do you think?
The fact is, I can never call my sister again. I can never call to complain about a lover, to tell her the good or bad news. She will never know the birth of my child, hold their tiny hand in hers.The fact is, I could call her number right now and someone else would answer the line. She's gone now. I'll never see her smile again, I'll never hear her say, blessed words: Sister! Sister!
She tells me not to touch her, not to help her out of bed, but she cannot do it on her own anymore. She kicks at me as I put my arm around her. I tell her I am not moving, I am here to help and she cannot do it on her own. She says: Mom, no! Stop! I tell her it's me, Chelsea, your sister. I hate this, she says as I walk her to the toilet. Her legs shake, she cannot sit up or stand on her own. Soon she will be bedridden.
Watching Shayna die was a living nightmare. I kept reminding myself that people die everyday, young people die, children, babies die - what I'm going through is not unique. War torn countries are faced with violence of death and traumatic loss everyday. But then, I am told, when young people die they tend to have sudden deaths; it's uncommon for a young person to endure a long illness. And it's so out of line with the natural order that one's ability to make sense of the world becomes completely, devestatingly fractured.