Some Autobiographical Notes: A List of Six

  1. I spent the formative years of my childhood about halfway between the Mystery Spot (Santa Cruz) & the Winchester Mystery Houseâ„¢ (San Jose), so it is no wonder that I developed–& have held onto over decades–a feel for the occult. Add to these the Rosicrucian Egyptian Museum  & you have a recipe for addle-headed New Age bunkum I feel lucky to have escaped.

2. Looking back, I can’t imagine why my step-father, a fundamentalist Christian of the restricted type, took me to such places. His brand of Christianity has a terror of the occult that goes back to the burning of “witches” & continues into the present with Jack Chick’s manichæan vision of the supernatural battle between God & Satan as it plays out among human beings: they were–& still are, I guess–very big on the doctrine of original sin, especially as it applies to children. Chick’s tracts were all over the church we attended, but they failed to take hold of my spiritual imagination. Even aged 10, something told me not to be taken in.

Rest Home santa cruz
The house where the author spent the formative years of his childhood

3. But that makes my resistance to my parents’ fundamentalism appear more heroic & far more coherent than it was. As a child, I was often filled with fear.1 It didn’t help that we lived in a large Victorian house–not the Mystery House by any stretch of the imagination, but big & old enough to contain spooks. The place had been converted to a “rest home” for the ambulatory elderly & my mother had been hired by some Christian organization to run the place. We lived upstairs, though I spent a lot of time in the kitchen, the only place my mother ever seemed happy.

4. There was a stained glass window on the landing of the main stairs that depicted an abstract floral design & beneath the flowers, a scroll with the name Elsie. The local lore–passed along by a neighbor when we first moved in–was the man who built the house had given the window to his young bride on the occasion of their wedding. The story grows dark, though, as the owner is increasingly jealous. First, he locks Elsie upstairs & tells the neighbors she is ill. Eventually, he grows so possessive that he restricts her to the master bedroom. She refuses to eat & dies–she dies in the room where I sleep from age 6 to 12. There is reason the believe, then, that the house was haunted–at least in the imagination of an anxious child.

5. I had a precocious vocabulary & saying my prayers at night, I would run through the standard list of praying for my mother & father, but would always end by praying that “no catastrophes befall us in the night.” I was afraid of Elsie’s ghost, afraid the place might burn down, afraid of burglars, & just blankly afraid, especially at night.

6. They say that the Winchester Mystery House is haunted–& well it may be. It was built by the widow of William Wirt Winchester, the treasurer of the eponymous manufacturer of firearms. William was the second generation of the family to work for the company founded by his father. After William’s death, his wife Sarah built the Mystery House, which, some say, is haunted by the ghosts of all the people killed by Winchester firearms. That would be a lot of ghosts, but being incorporeal beings, perhaps a million of them could walk up & down the staircase that led only to a blank wall.

Show 1 footnote

  1. In retrospect, I think that composing &/or distributing those tracts to children should count as a form of child abuse.

My Situation (A List of Eleven)

Note: I haven’t done a list post for quite a while–it’s a form that allowed me to find a way into using this space creatively again about six months ago, after a long break from writing, so I’m partial to it. It occurred to me while writing the last post that I might have avoided some of the semantic circling with a list, but rather than recase that piece, I think I’ll just start fresh.

  1. My situation is that I have been diagnosed with a form of kidney cancer that they tell you up front does not have a cure.
  2. But they also tell you that you can have an extended period of health with treatment.
  3. I am undergoing treatment. This consists of taking a particular drug for three months with two weeks off the drug twice during the period of treatment. The side-effects are not bad. At the moment, sleepiness when I’d like to be awake & insomnia (sometimes) when I’d like to be asleep.
  4. Because the tumor spread into my left hip, I have trouble walking without support, so I use a walker. I would like to graduate to a cane, which would give me a lot more mobility. I also spend most of my time sitting up in bed & though it is no longer very difficult to get up & down, I am slow & being slow when one is used to being fast is frustrating.
  5. I have to the best of my ability taken care of financial & other arrangements so as to make, when the time comes, a responsible exit from this life.
  6. I increasingly find myself entertaining notions of rebirth that I would have rejected as infantile wish-fulfilment only a few months ago.
  7. I am not really afraid of death, but I fear the loss of autonomy that accompanies modern, technological medical care; at the same time, I am grateful that I have access to that care. I have does as much as possible to insure my wishes are observed when I can no longer express myself.
  8. But I have been feeling a good deal of regret lately over things I had wanted to do that have been moved off the board. I have to use the markers that remain on the board & that has engendered some resentment.
  9. I am not much interested in distractions & entertainment, but I am deeply attached to my ability to continue to work at making poems & engaging the world through writing. Reading still feels worthwhile–both as a higher form of distraction & as education.
  10. The only other things that interest me deeply these days is talking to people–close friends I’ve had for a long time, mere acquaintances & everyone in between. I find people’s conversation endlessly worthwhile. The most worthwhile of all, though, is the conversation of friends. I am fortunate to have friends & to have them close enough that they can drop by to talk.
  11. No list, by its very nature, can be exhaustive; yet anyone’s situation contains an infinite number of potential items. This list, like any list, is a kind of snapshot of my situation. I apologize to any friends reading this who might be bothered by a certain frankness in some of the items, but this is where I am now. I have been feeling a little depressed & frustrated & resentful & regretful over the last few days. One way I deal with these states of mind / body is to write about them.

 

Making Art (A List of Six)

What’s the point of making the collages, the drawings, or the poems I work on sitting up in bed beside the window overlooking the river? Well, I have been making poems my entire adult life, even making a profession of it, though I would prefer that word be taken in the sense of profession of faith. (Full disclosure: I have made my living as a teacher of poetry.) And I have made little visual things almost as consistently. So, even though I am now limited by my disease, why shouldn’t I continue?

And yet, reader, you know what I mean–Now that the end of my life sooner rather than later is a real possibility, why bother with these trivialities? This is the question, in a bleak mood, with which I began the first draft of this post last week. Here is how I answer the question, as of the middle of June, 2016:

  1. It is what I have always done.
  2. It distracts me from the bleaker aspects of my situation.
  3. Other people have found them pleasing.
  4. For the poems: I have been working on a book for more than ten years that I should have finished long ago & I now feel a particular pressure to bring that project to a close.
  5. Who knows? Perhaps there will be another book after that–I’m writing fast these days.
  6. For the collages & drawings: I couldn’t really stop if there were a reason to.

Chemotherapy Update (A List of Eight)

  1. After all my life absorbing the cultural lore surrounding chemotherapy, I have been surprised this week–the first of four–that Sunitinib worked so quickly to restore, however incrementally, my strength & lift my fatigue.
  2. The lore says you will be sick as a dog, but as far as I can tell the nausea I was experiencing as I began chemo was a side effect of Percocet taken for pain. Since switching to mostly morphine sulfate with only occasional Percocet for pain, I haven’t had any nausea. Morphine is not quite as effective as Percocet, but the trade-off is worth messing around with the morphine to get the dosage right.
  3. My hair has not fallen out. Yet.
  4. Sunitinib comes with an extensive kit that includes a little satchel complete with fancy medication box with compartments for each day of the week, those subdivided into times of day. I may use the pill box, but want nothing to do with the satchel, what with its brand-identification implications.
  5. Sunitinib costs approximately $466 / capsule.
  6. The satchel also contains several expensively printed pamphlets intended, near as I can tell, to usher one into the arcana of the “cancer community.” I want nothing to do with that community. Such a community is a granfaloon, to borrow Kurt Vonnegut’s neologism: “A granfalloon, in the fictional religion of Bokononism (created by Kurt Vonnegut in his 1963 novel Cat’s Cradle), is defined as a “false karass.” That is, a group of people who affect a shared identity or purpose, but whose mutual association is actually meaningless.”1
  7. Flinch reaction: As my pain has receded, I still find myself flinching when making certain motions, despite the fact that the flinch itself is more painful (now) than the gesture or movement.
  8. Among all the brochures there is one sober one that explains “Sunitinib is not a cure” & that “different patients respond differently to this drug.” My oncologist had already explained this to me while making it clear that there is no cure for my cancer when it has developed past a certain point. “No cure, only management,” or, in blues language, “Doctor say it kill me, but he don’t say when.”2

Show 2 footnotes

  1. Source: Wikipedia.
  2. “Cocaine Blues.”

Drugs (A List of Seven)

Before even having a complete diagnosis, I have accumulated a small pharmacopeia, mostly analgesic.

  1. Ibuprofen: When I first developed pain in my back, I took a fair amount of ibuprofen, which worked pretty well. Sometimes I would switch to acetaminophen for a few days to give my stomach lining a rest.
  2. Cyclobenzaprine: A muscle relaxant. Worked fairly well for a couple of weeks in combination with a shot of
  3. Prednisone: The most common steroid. Can be taken by injection or orally. I was given an injection.
  4. Percocet: When my back pain threatened to become disabling my doctor prescribed percocet, a combination of 5 mg of oxycodone & 325 mg of acetaminophen. He ordered an MRI and by the time the fracture in my vertebrae was found–caused by “something” pushing on it–the prescription had run out. Because oxycodone is highly addictive, I was switched to
  5. Gabapentin: Nobody know how this works, but it is used primarily as an anticonvulsant, but also for pain that originates in nerve tissue. It didn’t work for me & it made me nauseated. I’m no longer taking it, having gone back to percocet, which can also make me want to throw up, which is why I’m also now taking
  6. Ondansetron: An anti-nausea drug I haven’t looked up on the Mayo Clinic website, my usual practice. At least two of the drugs above can cause constipation, so I’m also taking
  7. Docusate Sodium: A stool softener.

That’s my autobiography as of the beginning of May, or the physical strand of it anyway.

Bad Back (A List of Five)

  1. It’s not the bending over, it’s the straightening up.
  2. Buying a walking stick. (Probably won’t need the little compass embedded in the top, but it’s nice to be oriented. (See No. 3. below.)
  3. Percodan creates a kind of mild fogginess that is not unpleasant, but it’s a fog you want to get to the other side of before you forget how to spell your name.
  4. It’s good to be in the room with the widescreen TV, but I actually like audiobooks of classic genre novels better. Graham Greene, George Simenon, Wilkie Collins (the two great novels1, not the hack work.)
  5. Having a moderately good excuse to be behind schedule grading my students’ essays.

Show 1 footnote

  1. The Woman in White, The Moonstone.