WARNING! This page contains gremlins and demons and things about me you would probably rather not know. The old person's preoccupation and daily accounting of the crumblings. Transparency, you may see, is not always a good thing.
Friday, 13 March, 2020
Got little opportunity to add anytning today. Having an attact of the collywobbles plus too many distractions of daily living.
Typical collywobble symptoms: buzzing in the brain, lethargy, annoying to be upright. Certain sounds, like my dog's sudden high-pitched excited yapping I react with sudden anger, elevated pulse, everything closing in. I just want to be alone but they won't leave me alone, can't get even five uninterrupted minutes. I know this last is not true but it feels that way.
There are more details but no one wants to know about them. Maybe another time to dive into the ulcerative colitis (UC).
I am convinced all of my collywobbles are of an autoimmune origin.
All of this against a background of Covid-19 on all the media, dominating conversations. All of that is really interesting. I feel strnagly that it is not about me, though I know very well it is very possible that it is something will land on me.
Thursday 19 March 2020
Collywobbles going strong, wanting to write but it's a struggle to fight the fog. This week there is a strong GI involvement. At least it makes fasting easier.
I still cannot decide how much personal "medical" information I want to lay out here. I don't want to be that old person who goes on and on cataloguing all their ailments. Also known as a bore. But there is the warning at top, enter at your own risk.
It is the background noise of this whole enterprise. One if the things I want to get into writing has to do with managing gremlins. This is certainly a gremlin. Gremlins need love and attention but it has to be done in the right way.
Come, megrims, mollygrubs and collywobbles!
Aroint thee, sweetness and light!
A problem I am having with collywobbles is that I now am never sure who they really belong to or what body domain sits the cause. Assuming they are about something, which they are just as likely to not be about anything. I'll get concrete.
For some time now my digestive tract––gastrointestinal or GI system––has been amiss. This causes me some concern as I have been managing living with ulcerative colitis. This is an autoimmune disorder, which means I am attacking me; I have found the enemy and it is me. I've had this for many years and have had only two severe flare ups with little in between but toiet-related annoyances. Enough said there. I have been on a stable dose of medication––an antiinflammatory aimed directly at the bowel––an my GI doc in arecently taking a look in there has started me on an immunomodulating medication. "Hey guys, tone it down in there!" It's a bit of a process getting started on this, a bunch of complex lab work (I am a fast metabolizer, tests confirm what I told her, my doctor). Blood work every two weeks. All this suggests its serious business.
Then along comes Covid-19 pandemic.
25 MARCH 2020 A RIDDLE:
Malthusians who may believe our current plague will dampen world population growth need to think it further through. What do people do when there's no shopping they can do? The answer will be revealed starting late December.
26 MARCH 2020
I'm not a dancer but I dance.
I'm not a singer but I sing.
I'm not a poet but I act it anyway.
I'm not dead and I'm dying.
I'm not alive and I'm living.
I don't exist and I become.
28 MARCH 2020
I am keen to write today, press forward on the writings. But I awoke feeling like I just wanted to go to sleep. Moving takes such effort. I was going to take Baudie out on a trail for a bit. Walking is an onerous chore. This is the gremlin sometimes called Chronic Fatigue Syndrome. When I'm being more formal I call it by the name Myalgic Encephalomyelitis. Some like systemic exertion intolerance disease. Mostly I name it Collywobbles. Collywobbles has many ways of expressing.
You are very healthy, says my doctor, looking at my labs and not so much at me. In a way that's reassuring. I know what she means. I mentiong Chronic Fatigue, and she wordlessly conveys her lack of interest in that diagnosis. After all, it does not show up on any lab work and if it did, so what, there's no medication for it. It was she who also identified I'd had Hashimoto's Thyroid (wonder what Hashimoto was doing for a thyroid).
My neurologist looks at my MRI and sees something "consistent with migraine." She calls it atypical migraine and even though I comes without pain her pet name for it is Headache. "How's the Headache?" she always asks. It's kind of like the ADHD. "How's the Hyperactivity?" Never hyperactive is my reply.
My gastroenterologist is, of course, only interested in my digestive plumbing, mostly my colon. My Ulcerative Colitis gremlin goes to visit her. When I was first diagnosed with UC I knew nothing about it. What causes ulcerative colitis I innocently asked. He looked surprised and said, in his charming Indian accent, "Why, ulcerative colitis causes unlcerative colitis." I was no confident that this was the doctor for me. I also do not care for the parking at this clinic. I did learn though that it is an autoimmune disorder.
My neurologist also was not happy with my reports from GI and she referred me to another, in her building. I kept the appointment and was told by the office manager that the doctor would not see me because I had seen another doctor. She was not to be argued or cajoled out of this stance. A few days later my neurologist got a report from that office stating that I was not happy with their services and it was I who had refused to be seen.
It was also recommended I see an immunologist as I was having a growing list of autoimmune disorders. I went to one who has a reputation as the best immunologist. Intake forms had many questions about my pain. No pain. The doctor proceeded to ask me about my pain. He' clearly not glanced at the intake form; it was just a pro forma thing. I clarified as best I could that I have several autoimmune disorders but not rheumatoid arthritis. I was seeing him as an immunologist. He sat at his computer and questioned me without looking at me. As he entered my answers to his questions he spoke aloud what he was writing. That's not what I said, I had to tell him several times. I do not have fibromyalgia I informed him. The report that went to the referring physician quoted me as saying many things I never said, in fact the things I had corrected as he was writing. The main conclusion: the patient does not have fibromyalgia.
This took me back many years, to my first encounter, as a patient, with a neurologist. I was in my early thirties, sick with something I saw a doctor. He happened to notice I had fascilulations in my calves and got very concerned, insisted I see a neurologist. When I kept the appointment they wanted payment up front. "That will be $100." I had no insurance at the time. That was a lot of money for me then. "Cancel the appointment, then," I said. "Sure," she said. "But you will still owe us $100." I paid up and went in to see the doctor. He asked why I was there. I have fasciculations, and I showed him. He looked at the wormy twitching in my legs and then opined. "You have fasciculations. Come back when you have more money."
I like all the people on my current regular medical team. I've been with my primary care doc for 30 years. I like my gastroenterologist and hope she hangs around. I like my neurologist and would make appointments just to sit and chat but she has a busy practice (because she sits and chats). I like my cardiologist though I really have no need to see him but do the six-month follow ups just to keep in touch.
When the fatigue started they thought it was the low thyroid and B12. Those got corrected and the fatigue remained. The cardiologist reasonable thought it was the atrial fibrillation. We corrected that and the fatigue remained. So now it seems it's a matter of learning to live with a gremlin.
Ulcerative collitis (with its attendant osteoporosis), atypical migraine, chronic fatigue, thyroid and B12 have periods of waning. My opinion is that all of this is varous expressions of one thing, a general autoimmune disorder, my Collywobbles.
One thing I do to live with this gremlin is to do at least the least that I can do. I could not write the thing I wanted but I could write something. This is what the gremlin allowed. Maybe now pups (this is gremlin's pronoun: person of unknown pronoun). Maybe now I can continue on with the essay called Aura though that still feels like it will be work.
20 MARCH 2020
A dilemma for Science. Science has learned that nothing exists but in relation to other things but it got there on the predication that things exist, in something they call space. Much of it works to hide that knowledge from itself. Curious how analogous to the workings of human consciousness, needing to run on hiding from itself.
02 APRIL 2020
I'm thinking about 'transparency.' Yesterday was not a good day. Collywobbles in revolt. Does anybody really want more details about that? Result here was that almost nothing got done on this webbook. It did lead to me resuming thinking about transparency and if it is really possible. The concept has an underlying assumption about the nature of things this is transparently wrong.
I did do considerable reading of a novel yesterday. I made it through Part 1 of the first book of a six-volume 'novel' which I find interesting in that it is almost lacking in interest and I keep coming back to it. I can hardly wait to find out what does not happen. The book, what is called an autobiographical novel, is My Struggle, by Karl Ove Knausgaard (translated from the Norwegian). I is being compared with Proust's Remembrance of Things Past. It is a sort of study in transparency, fine detail of a man's life. It is still detail that is selected, events chosen from a myriad of concurrent competing events. Will it reveal some Truth about the man? What are the selection criteria?
I knew very little about this book when I first picked it up. A "literary sensation," that was pretty much it. Mention of Proust pricked my attention; I am a fan. I did not have a glimmer of suspicion that it would fit so neatly into my own experiments in transparency (as did A Beautiful Day in the Neighborhood). What I am seeing in these attempts to locate a person, find her core, his essence, their true self, may be ultimately futile because the basic assumption is wrong.
03 APRIL 2020
Pour equal parts gin and solitude into an ice-filled tumbler
use the most medicinal-botanical gin you can find
(but you are stuck with whatever flavor of solitude’s on hand)
toss in a dash or two of bitters
tansy and rue
(Tanaceta vulgare and Ruta graveolens)
preferred but this up to you
The real art of this cocktail
is in how you mix it up
and I can’t tell you how to do that
I can offer some suggestions
examples from the range of ways
sit and stare at the sweat beads forming and flowing down the tumbler.
follow the course of one rivulet and pour once it’s reached its destination.
or sit and stare—vacant—until you suddenly remember you’ve drinking to do
or dance a jig
dance a jig while holding the jug
(holding it snug as a bug in a rug)
or try stirring––
avidly or lackadaisically
stir with a finger a rod
(but spare the rod)
do it as performance or praxis
masked or unmasked
Alternatively you can just drink the fucking gin right out of the bottle.
©2020 Richard Valasek
I got that out of my system. I had a collywobbly night, sleep disrupted by interior grumblings and stupid dreams. During that time I saw how far I am strayong fomr my program. Too much on ornamentation, I deterimined to see if I can simply state the main points I want to make about orthobinomy and its possible role in keeping us ongoing in a thriveful kind of way. Tried to pick that up and instead that Quarantini thing was too insistent. Maybe that's the best I can do at the moment to move my program forward.
06 APRIL 2020
Had to go into town, Queens office building 3, for an ultrasound of my gall bladder. While waiting I opended my Kindle to Despret, What Would Animals Say.... The book is in the form of an abecedarium but I'm reading it randomly. It opened on the letter 'O'. O for Ouevres: Do birds make Art? Reading the chapter title I immediately thought of the bower bird. Specifically the bower bird nest I have visited over the years in the Olive Pink botanical garden in Alice Springs, then of an artisitic rendition of a bower bird nest I had seen in some Australian museum. And the chapter turned out to be a lot about the bower bird. But the real topic, what is art? And now I want to write about orthobionomy as an artistic expression, an ouevre.
14 APRIL 2020
Was getting nothing done on this front (due I am pretty sure to Collywobbles) I have had some motivation and energy to do puttering in the garden, a bit at a time. Sitting in the morning, waking up to my garden, it asked for more color. More accurately, a desire, even a cry, for color emerged. So I got more penta, durable here and prolific color fill of little red, pink, another pink, white stars. Then I saw a mass of blue. The garden has little blue: one small carpeting of dwarf morning glory. Labeled "Plectranthus," suggesting partial sun, I had the perfect spot for it. I'd never seen this plant before but one of its genus grows like a weed throughout the garden, commonly called Cuban oregano but this little bit of knowledge encouraged me that another of the genus could do well as well. As I was finishing planting and tidying I was thinking again about transparency. Maybe the added color aided here. I am settled for now on the conviction that what we call transparency (e.g., in financial matters, or sexual proclivities, a transparent self) the concept that one can reveal all the corners and recesses of the self and make them public is a fiction. Possibly a dangerous fiction. I know Nietzsche had said much the same somewhere, using an onion metaphor.
Autobiographical self, on which transparency must rest, is most definitely a fiction, the bulk of it foisted upon you without you noticing in the slightest you were being implanted. It is a constantly shifting chimera. It is the surround, the circumstance, the context that calls forth the moment's self. So I let go (more loosely) this project of transparency and ask, "What is asking to be written?" Or "What is it that is writing me?" Orthobionomy to the front of the queue. Go there.
25 APRIL 2020
The notion of laws of life crept into my thoughts on my Manana Trail walk this morning. I want to start a new list. I make no truth claims about this and know that down the road it all may revise, as it has been doing for years.
Life is coagulate in the capillaries of the universe. It exists on a most minuscule scale.
Number theory suggests that in order for meaning to exist a threshold N of four is necessary.
Life is a condensation of witnessing.
Requires reciprocal movement. A dialectic of care.
06 MAY 2020
Lot's to write about here, much has happened, much change, since my last posting. There's a good chance my wife Karen and I have both had a version of covid-19. Karen had an unusual dry cough for a couple weeks and fever that would wax up to no more than 101, mostly about 100, and a tightness in her chest. She could not get tested, did not meet enought criteria. I on the other hand started having episodes of nausea vomiting, lots of diarrhea, vestibular disturbances, fatigue, loss of appetite and narrowed range of foods tolerated. Some of this familar, living with ulcerative colitis, living with something like chronic fatigue. The chronic fatigue I was making headway with. I had located a significant junction that was malfunctioning and head found a way to do repair on those junctions, using equipment in the gym. But then the gyms all closed.
I was really sick for 2-3 weeks. The tiniest effort in the garded and I had to crawl to bed. I did continue with walking, usually snail-paced. I consulted with my gastroenterologist right off the bat as the symptoms were mostly GI and she had been peering in there, from the top and from the bottom. Some of it fit with gall bladder. She was not convinced but we did ultrasound. Some stones (we mostly all have some), no blockage, no inflammation, gall bladder ruled out. Was it a side effect of the immunosuppresant medication she wanted me to try? We decided to put a hold on that for now. When I stopped that med though I was three days into normal GI funtioning, I was already in recovery. In fact I was starting to feel so good that I took on some major garden projects.
One of the things I had discussed with my GI doc was migraine, wondering if this might be some aspect of my peculiar migraine. She is familiar with migraine in the gut. As I was doing some research I discovered vestibular migraine and that fit my symptoms pretty neatly. Long ago I'd coined the word dysvestibulation to to give a name to what I was experiencing. GI doc wanted me to see my neurologist with whom I'd already made an appointment. Then the appointment was moved back and then moved back again. As I read about vestibular migraine I found a list (on a reputable medical site) I learned there are no reliable treament options, it's mosly a matter of learning to live with it, adapting. Some medications reported to have shown some value to some people. One stood out to me, an herbal medication called butterbur. Though I had for many years studied herbal medicine I had missed this one. I found capsules on Amazon. After several days of one a day of these I realized my migraine had'nt been bothering me for a couple days. I am also seeing after several days of relatively heavy labor in the garden I have not been having the typical exertional malaise. I cannot attribute this to the butterbur*.
Back to my covid-19 hypothesis. I also read, in a reputable medical source, that about a third of covid patients present with nausea, vomiting, diarrhea, vestibular disturbance, fatigue. No cough, fever, shorness of breath. The course if about three weeks. So as Karen was having a mild illness with cough and fever, I was having a more severe (though not serious) infection with GI symptoms dominant. A good chance we had covid-19 together.
There's a rather old idea about certain viruses like corona- and rhinoviruses (common cold bugs) that they may actually be good for a person in the long run. They have an effect of tuning up the immune system. I have always found this an attractive idea, not caring much whether it's "true" or not. Believing this has made me much more willing to endure the unpleasantness of a cold. I am wondering if, while putting me out of commission for three weeks the exercise for my immune system. I sill get tired after a few hours of work in the garden but I am recovered after sleep and ready to do more rather than debilitated for three days after a little strenuous play.
*I am not making any claim or recommendation for the use of butterbur for migraine. If you think it might be useful for you do what I did not do and check with your physician. I will be discussing this with my neurologist when she is once again available. The worst reported side effect though is belching, which I have not been doing any more than usual. From what I've read so far it's mostly well tolerated, reports of impact on the liver from ingesting unprocessed plant.
The other exciting thng is that, since our summer travel plans have gone all pear-shaped we decided to auditon for the Hawaii Shakespeare Festival and Karen and I both got cast in Merry Wives of Windsor with our good friend Eden Lee cast as Falstaff. She was Fool to my Lear a couple years ago. This will be exciting. They are going to do the plays virtual and no one really knows what that will look like or how we will do it. Being in the Worship Team for the First Unitarian Church of Honolulu Karen and I have some experience in putting on a worhship service by Zoom, so we are comfortable with this platform. I have been cast as Host of the Garter and Karen is Justice Shallow. Plus, if we want, we can trade off.
18 May 2020
I got a momentous email this day from friend Scott McQuiddy in Canada:
22 MAY 2020
I have not been writing here frequently but want to write today in gratitude for a near perfect day, all the gremlins are in cooperation. The balance of activity is most appealing. I awoke early, 5:30 and was awake so got up from a complicated dream. Then I just sat, with coffee. Ater a bit I did some work harvesting and deploying compost. I did some reading, thinking, wrtiing (see Laws of Life in Stories), some garden work with Karen, more writing, cooking (I was happy to find rhubarb in the market so am making a Persian lamb and rhubarb koresh). It suits me to wander from task to task.
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