It’s granny season in the Top End. Visit any shopping centre and you’ll see the oldies shuffling around wasting time, looking after the grandchildren, until their working children finish supporting the unemployed and the military and they can go home to get their fix of the daily soap.
My Mum and Dad are in their late 70’s and, while Mum still hoofs around, Dad suffers from debilitating circulatory disease, the result of 40 years smoking, and now requires a ‘scooter’ to get about. They’re away to Groote Eylandt (about 300km to the east) to stay with my brother for a couple of weeks, then it’s my turn again until I put them on the Ghan for the return trip to Adelaide
I’ve been interested in geneaology for a couple of years now and have traced my father’s family back to the ship (the Silistria in 1864) that bought my great-grandfather from Birmingham to South Australia. I have some information provided by some writing that my grandfather did just before he died and I’m trying to get my Dad to tell me more about his early life. To this end I sought his war record from the Navy and it arrived today. It’s facinating to see the minutae of a life recorded on yellowed cards with ragged edges. He’ll be pleased to see it when he comes back and I hope it will provide the impetus to tell me more detail about his life.
In any case I’m going to start to write more about my life and include some of my thoughts and seek to articulate some values, sort of putting in words the things that I consider important. Unfortunately I don’t have the writing skills to be able to capture what I think about in such a way that it is interesting to anyone other than me. Not like some authors who are able to ‘tell it like it is’ to the point where their words strip away any semblance of comfort and pretence. Recently I read a book titled Cancer, Two Voices by Sandra Butler and Barbara Rosenblum.
I’m scared shitless and feel very disoriented in my terror: sad, jubilant, out here on that ledge so far away, so steep, that if I were a dog or other animal I would be shaking uncontrollably almost all the time. That’s how existentially anxious I am about living until this time next year. No – this time six months from now – without a recurrence, without cancer.
It is 11:30 P.M. and this is the second night in a row that I have taken a sleeping pill. I’m tired and exhausted, yet sleep does not take me over. I’m gripped and consumed by the fear. The fear. The fear of more cancer. The fear of going off chemotherapy. The fear of recurrence. The fear of not living because I’m afraid of dying. It’s not anxiety, as in an anxiety attack, with its hot symptoms, raging away. It’s fear. It’s the fear of death, pure and simple. The fear of no time. Of claustrophobia. Of shrinking, shortened time. Of tragic regrets and the tragedy of life cut short; the tragedy of missed opportunities and the tragedy of having to live at the highs and lows, a roller coaster that few understand. It borders on my aloneness, that old aloneness that has haunted me for all my life.
I’m failing apart. During the year and a half of chemotherapy, I kept myself together, even cheerful, and had a good attitude. But now that it’s over, I feel my grief acutely. It is relentless and I have troubles all the time. There are many troubles. There is bleeding from the nose. There is bleeding and intense anal pain. There is hypersalivation, retention of bodily fluids, and tears in my eyes that don’t flow through the tear ducts but collect as if I had two sponges in those sockets. And there is the weight of my body. distended, misshapen, unfamiliar, irritable, uncomfortable, and unsexual. And unhappy. There is the dry skin. The difficulty swallowing. The black streaks in my nails. The funny sensations on my tongue. There are the skin cells on both my elbows that are hypertrophic, controlled now because of Methotrexate but bound to be inflamed and require therapy in a few months.
My hair keeps falling out in clumps again, coming out even as I run fingers through it. It’s really the thinnest it’s been since chemo ended. Today I wore a hat for the first time in a year. That’s how bad it looks. And I am so weary, so unhappy, so afraid I won’t even have three years. I watch the months pass, just like cliches in the movies that let you know how time passes: the leaves fall or the seasons change quickly or the pages of a calendar go flying.
I feel myself preparing for death: taking stock, making endings, providing for the people I love with money and property, creating financial trusts and taking care of business. I’m so afraid. I’m afraid of cutting myself with a knife in the kitchen. I’m afraid light bulbs will explode when I turn them on. I’m afraid all the dishes will fall on my head when I open the cabinet door to get a cup. I’m afraid the mice will run over my bare feet. It’s everywhere. I don’t know where the fear is, inside or out and it’s everywhere all the time.
How many people can articulate their feelings like that ? Barbara (the one who died) writes about capturing the detail of her dying days.
Now I wonder what a series of photographs representing my dying would look like. How would I photograph myself now? I try to imagine a series of pictures of me taken at 9 am. Three months ago they would have shown a bright, spunky woman walking her dog or eating a big breakfast of ham and eggs, complete with cups of steaming coffee made from firstclass beans ground only moments before filtering. Or perhaps the pictures would show me sitting at the typewriter, looking intense and full of concentration, pounding energetically, trying in a lastminute attempt to fix the words to the page.
Three weeks later the 9 am pictures would be different. Breakfast is a small bowl of porridge and I may be sitting at the table in my bathrobe rather than in my daily clothing. There would be no more pictures of me walking the pooch. I now pace around the apartment. It’s safer and when my breath runs out, I lie down until I can catch my breath once again. The hilly, slanted streets of San Francisco, the ones that look so good in chase scenes in Hollywood movies, are too hard for me now. But there’s still a picture of me sitting at the typewriter.
Another three weeks pass. The 9 am images are different yet again. I sit at the table in my bathrobe, staring at the glass of orange juice and the antinausea pill. The next image shows me struggling to get it down. By now I hardly walk around the apartment. Even that is too tiring. Staying in bed is simpler and I can breathe more easily by lying flat, so that my swollen liver does not push against my diaphragm, thereby decreasing the amount of air I can inhale. The swelling in my abdomen is now visible. I look pregnant but am merely filled with fluids that no longer pass into the liver, but rather collect stagnantly in the abdominal tissues. This is the first visible sign of my illness. All the other images have merely shown differences in my behavior. There are no more pictures of me at the typewriter. Instead I write in bed on the lap desk given to me by a friend.
Three weeks later I’m sleeping at 9 am. If the film were color, it would show a yellow tone to my skin and eyes. Liver malfunction manifests itself as jaundice. In one picture my left eyelid is lifted slightly, a sign that I understand that I am being photographed, but that I am too weak to speak or interact or perhaps even to care. I am forty – four years old.
I was reminded of the words in the book by an article in the Christian Science Monitor that was linked from the Arts & Letters website. Barbara Rosenblum wrote an ‘ethical will’ to her nephew Asher, continuing a tradition “many cultures have for elders handing down advice and blessings to younger generations. In 1050, for example, a Jewish father wrote a letter for his son to read after he died, extolling the importance of a debt-free life”. According to a Washington Post article “The ethical will is rooted in Jewish tradition, especially the biblical story of a dying Jacob gathering his children around him for his last blessings and commands. Rabbi Jack Riemer of Boca Raton, Fla., became one of the first contemporary Jewish leaders to revive the practice when he began speaking of it in the 1980s.”
I like the idea and am going to gently coerce my parents into leaving some idea of their values and feelings for their grandchildren to read afyter they’ve died, hopefully far off into the future.