WRITING ON THE INSIDE OF MY EYELIDS
EXCERPTS FROM THE JOURNAL
After the introductory entry, excerpts from Patrick’s journal over the years 1999 to 2003 are organized chronologically under specific themes: physical, emotional and mental effort; difficulties with his use of the computer; the search for his story; battling with depression; and domestic life.
September 18, 2001
…This is not a journal for any given subject or topic, instead it is a journal for any and every topic. The journal of a life? Perhaps not the most interesting of ones, but then whose is, given that we are our own worst critics? I would that I led the most interesting of lives, but that lot is not mine and, however much I might desire that (and once aspired to it), it is just a life. What a scathing condemnation that last sentence is. So be it. My life is my life. If you do not wish to read about it, you had better stop. So be warned and possibly tempted. Continued reading may be boring. Alternatively, it may not be for the faint at heart.
On his physical, emotional and mental struggles
April 22, 1998
…Since I have decided to end my employment, it is best that I end it quickly. I am becoming familiar with the use of my computer and my Dragon Dictate program. I believe that I have alternatives which will make better use of my strengths and which will provide me with more satisfaction. I have finally come to the realization that I am not being lazy. In truth, I will make better use of my energies and time by writing. I have concerns that I will be documenting without audience, given the profusion of information in the world, but I believe this is something that I should do.
Monday, Aug. 18, 1998
Today, in two different letters that arrived at the same time, I received my Canada Pension Plan notification and the approval of my Long Term Disability Insurance. Combined together, they will amount to approximately as much as I was earning after taxes. Because I don’t pay many taxes now, it means that I will only take a slight decrease in my take home pay. It is very strange to think that I do not ever have to work again. When Deborah told me of the approvals I almost cried. Not from relief but from the recognition that this was an acknowledgement of my weakness. I do not want to be this weak.
So now I have to determine the purpose of my life. Not much to that, as goals go. I don’t even know if it’s the right goal. It may be a substantial waste of time to even ask that question. I don’t know. Not having a job to do or to be forced to do by the demands of money leaves me feeling very odd.
Friday March 12, 1999
Even when there is nothing else to write, someone aspiring to write can still write the resolution, "every single day I must write."
The mindless repetition of doing something again and again and again and again and again either results in getting better or results in being fortunate enough to chance on a lucky moment in which all the stars line up propitiously and the piece of literary magic occurs. I don’t expect magic. Not without effort and I am willing to put that in. I do not simply want to reflect upon my goal or my project.
Let’s talk instead about some random thoughts I have been having. My recent thoughts have been returning again and again to the idea that, like the aptly named television program, ours is a "Lonely Planet".
Thursday, March 18, 1999
I do not have sufficient short-term memory to remember where my time goes. My last entry was Monday and now it is Thursday and only one day off for my birthday and another day just disappeared. That is not fair - it was spent working on the Standard Rules project, but it‘s still feels like it disappeared.
Deborah gave me a Harley Davidson motorcycle peaked leather cap for my birthday. It matches my Judy jacket and now I look like a biker ‘wannabe’. At least I am not fat. Robert suggested leather chaps, and a Harley Davidson sticker for my wheelchair. I don‘t know whether to laugh or cry…
March 24, 1999
Yesterday, I did not feel good. Just the bowels, but I can‘t say I enjoyed it. So I spent my time writing a confused poem. I wonder if Shakespeare had bad days. Undoubtedly, and doubtlessly his worst surpassed my best. Such are the little triumphs of the little life. Strife, knife, life, strife…
April 12, 1999
Today started in a blanket of small-scale discomfort but somehow worked itself into a productive effort. Supper was made and laundry done thanks to an efficient homecare worker, phone calls were made and homecare supplies were requested and received, and now a moment or two with which to write. If nothing else, I have a varied and sometimes hectic life.
I have had a headache as a result of too much computer screen viewing and too much television watching. Of the two activities, I‘d much prefer computer screen viewing because of the satisfaction provided by my writing, so if a choice has to be made, television will just have to go. I have given up Scotch, sex, and my sight. I do not think giving up watching television will be much by comparison. It is strange that pleasureful vices have been slowly taken from me. Not that I think there is a moral there, by half. Or one that I would want to promulgate.
April 14, 1999
It would appear as if my disability will restrict my writing in the morning. It is really only until after my nap that I feel well enough to write. Today I listened to Milton Acorn reciting a poem on the radio. There was some delightful discussion about „voice." In Milton Acorn‘s case, the words leapt out of the radio with such depth and had obviously been chosen with such care. I don‘t know if I will ever have the strength to put such effort into my words. I imagine I will have to find my own voice, even if it turns out to be a sparse and lazy one. Who knows? Maybe there are people who want to read lazy voices and lazy books.
If you wanted to lie on the beach, you should have been a grain of sand. For me, this says a lot about doing nothing versus doing something. I prefer to be doing something, however badly.
Wednesday, May 26, 1999
There is so little time to write. Today I have made a rice salad, but the dressing is no good. The wheelchair hasn‘t worked out either. I am very stiff and sore and pretty uncomfortable. („Pretty uncomfortable" - a strange combination of words.) I have also been thinking about definitions of what is genuine, the commodification of culture, the purpose of pain, and related matters. I am spending more time accommodating my various disabilities. Not pleasant, but necessary.
Thursday, May 27, 1999
Just living my life is taking all my time. In some ways, I wish I could just sit here and write. No, in every way I just wish I could sit here and write. That is not to be, however, and I could never expect the things destiny or karma has, had, or will have in-store for me. The goal of writing something for publication may be impossible, but it is a nice goal. Having heard Mordecai Richler describing the woes of a „book peddler" while on tour perhaps the real joy is in the imagining. The practical execution of the job might not be so pleasant. Tonight, Deb and Becca are going to a soccer game located at a school far away. I will have a chance to work then.
I have had so many ideas for stories. The Joshua Pictures, and others. I don‘t know the venue, or if anything will ever happen from any of this, but I sure hope so. As well, I hope that I will do more than hope.
Friday, May 28, 1999
Brutally hot outside. Even with air conditioning on, the inside of the house is hot. I am at the whim of the weather.
May 31, 1999
Things have shifted so quickly. I am now considering keeping the [hand-operated] wheelchair, the weather is brutally cold outside, and I can no longer deny that using the computer hurts my head. No pain, no gain. It has never stopped me before. Not out of determination, but stupidity. No one ever said stupidity suffered from apathy. A nice thought, that.
April 20, 2000
Yesterday was brutal. I began the day wrong, with a small breakfast, and compounded the error by not eating enough throughout the day. Happily, yesterday was only one day long and today shows prospects of being better…
I had a very strange thought yesterday. It felt weird to have, as a project, planning for your own funeral. You are given the opportunity to structure what people will have as a memory of you. What do you want them to remember? What are you trying to say and how do you want to say it? So weird, so weird. There are endless choices of readings, music, songs for them to sing.
July 22, 2000
A hailstorm which peppered the house last night has me thinking about the extremes of Winnipeg weather. There is excessive cold, excessive rain, on occasion hail, rapid temperature fluctuations, and – occasionally - excessive snow. Throw in a painful package of mosquitoes and the occasional city-threatening flood and it is not surprising that most Canadians think that Winnipeg is somewhere best left behind as a youthful endeavor but not a place where one would wish to live. More fools they. It is only by facing extremes that one knows their own capacities. Unfortunately, it is a lesson which must be learned repeatedly because we so rapidly cast ourselves upon stony beaches of doubt and forget our past abilities. It is a function of aging and probably necessary in the grand evolutionary scheme. Or something like that….
January 12, 2001
And I am awake, and I am asleep. And I am awake, and I am asleep. I am a light bulb, flickering at the touch of my daughter‘s fingers. Is this what my disease demands of me? Two hours asleep for every hour awake? No wonder I get no work done. Fatigue becomes the constant of my existence. In the final analysis, sleep is really very boring. Not much to serve as subject for conversation or creative writing. A distinct hamper on projects - and on maintaining other people’s interest. The project becomes one of staying awake and that is a pretty boring project for everyone else.
I am so rusty at writing. I have not been writing for several weeks and even forming a coherent sentence is difficult. Certainly flow is always going to be a problem for me. But now I can barely string two thoughts together. It will come; it will come. The psychology of our society has taken so many missteps. The psychology of a sick global society - that might make a good title for a book. would argue that the ills of our current existence are the result of having embarked on an erroneous path. Pollution, overpopulation, refugee movements are all a result of human greed. Too simple, too simple. What a stupid idea. My mind is better than that, but I am just too tired. I don‘t have anything really to write about.
Don’t think it all away. The wise advice of the artist Mary Pratt. She led a life and whether as good or as bad as it could have been, it was hers. In the end, our lives are our own and that is all that we have ownership over when we leave this earth. Yeeuch, profundity. It makes me want to barf.
January 26, 2001
‘There‘s a lot of use in empty symbolism.’
I have spent two days thinking about the process of writing and it has been vicious. This morning I have a nasty cold, probably as a result of my wonderful bag of germs. In consequence, I am giving up!
March 18, 2001
… My life is further complicated by my decreasing energy and strength. This morning, I recorded the opening story of „‘Tis the season to Kazoo." Unfortunately, my voice sounded strained. After only one hour I was beat. Working that hard is tiring.
June 12, 2001
I had a bad sleep last night. There was a long period of wakefulness somewhere between 3 a.m. and 6 a.m. I did not think that I would feel rested today but then I fell asleep after Deborah and kids left and now I feel wonderful. Today has become cool and beautiful so I am torn between writing and getting outside. I have chosen the former because - well, just because. It is pleasant to feel this alive.
Yesterday, I went for my annual visit to the neurologist. It turned out to be very frustrating. I was treated to a visit first with her nurse, then with the doctor and then with some clinic nurse as well. They fussed with my medicines and my home situation but they really had nothing to say or do for me. While they were attempting to find some way to provide me comfort and themselves purpose, I became increasingly annoyed. I did not feel as if I was being listened to - they were patronizing and condescending in their well-meaning-ness. It is something for me to remember as well in my relations with Deborah. I may mean the best, but trying to solve other people‘s problems does not provide them the opportunity of solving the problems themselves.
Perhaps that is the biggest leap of faith. To entrust people with the opportunity to make their own choice even though the choices are wrong - especially if you know it is the wrong choice. I have to remember that for my treatment of Becca. Also, it would be wonderful for a second act for my writing.
October 20, 2001
Hopefully, I will be able to write for a longer period than I was capable of yesterday. Who knows? Of course, I am still tired and I am very tired of answering the question, „How are you feeling?" I feel tired. What else is to be expected? I do not think most people understand that hospitals release patients when it is convenient for them to do so and not necessarily when the patients „feel" better. No, the characterization is unfair. Most people have had enough experience with health-care in the year 2000 to know that this is the case.
I came up with another wonderful phrase. Aggravated angels. Not perfect, but not bad.
I would like to start writing again but I don‘t want to blow it. A common problem is that I imbue the writing process with such importance, I am scared to begin for fear I will go astray. Then I think that if I go astray, the wrongs cannot be unraveled and made right. So many fears - stupid, really. As if write cannot be made right by write.
October 25, 2001
…I feel very beleaguered right now. There is a substantial difference between being disabled and being ill. I think I may be moving into the section of my life where I am both and I am not enjoying it. The more time I devote to being miserable is the less time I devote to being me.
August 4, 2002
Precious moments are few and far between. When you can say, in honesty and to yourself, that was me, that was my best, that was the best of anything that I do. You can look back on what you did and feel a quiet pride, like you would like to show it to someone because it was good and deserved to be seen, but it wouldn‘t matter if you didn‘t because it would still be just as good and you would know it and nobody else really needed to know. That sort of thing happens in the morning when energies are bright and the light different than any other time of day.
August 7, 2002
I am in the middle of an MS exacerbation. It‘s very strange. In the past, I have had only one other occasion when I really noticed the start of a new symptom, but - as of yesterday and today - boy, I am sure feeling it now. (I hope that this is being recorded by my computer for history‘s sake.)
On struggling with the computer
May 5, 1998
I have been very busy. As a consequence, I have had little time to write in this journal. Also I have been frustrated with this computer program. However, with continued use, I am either becoming more tolerant or the machine is becoming smarter. I suspect the former, which speaks volumes about human malleability.
My writing is not quick when using this computer. However that too is an advantage. More time spent in reflection provides me the opportunity to be more concise and to make use of the appropriate words.
I am now well and truly retired. I have delivered the appropriate forms to my doctor for completion, I have advised my employer, and begun a planning process for the future. There are a number of tasks to be executed including organizing my computer to facilitate my activities and setting up calendar and address books.
Wednesday, May 6, 1998
The truth of writing with this computer program is that I will be fortunate to complete a page a day. I shall have to concentrate on quality and not on quantity. For the sake of my voice, I will also have to speak in longer phrases.
Thursday, March 18, 1999
…I am becoming more adept with this program. I have begun to use it for moving within a document and not just for editing purposes. It has some interesting features. Certainly the speed of my work has progressed. Also, the recognition accuracy of my computer program has increased tremendously. Unfortunately, what I once considered clever usage of the English language and clarity of thought has turned out, on revision and editing, to be not much more than a misconception built on sand. I will just have to learn to write better.
The use of this program will mean that my work is not measured in pages, but rather in sentences - or even in words. While this is frustrating, I am thankful that I am able to write at all.
The necessity of editing my material while it is being written to ensure accuracy makes for additional complications. How do I impart emotional substance while being constrained in this fashion? How do I write "I love you" without the phrase sounding contrived and mechanical?
April 8, 1999
Today, I learned how to change the base font. It is an achievement that will drastically change and facilitate my writing because I will no longer be dependent upon Zoomtext for reading my text. This is amazing. I think I am in heaven. Admittedly, there are complications to writing in this format, but being able to see my work is so pleasant that I will accept the additional complications of reformatting. Correcting spelling errors is a pain, but not insurmountable. I am one happy camper. The proof will be in the pudding. Will I be able to retain a coherent train of thought while writing in this font size? Will I be able to construct paragraphs that flow logically and seamlessly and bring delight to the reader? I definitely think I can.
April 27 1999
Today was difficult. I did not feel well and my homecare worker worked badly as a result of allergies. I only have a few minutes to write before Deborah comes home with Rebecca. Yesterday was a frustrating comedy of errors. I erased my morning‘s work accidentally and then caused my computer to malfunction in an interesting way. It began writing spontaneously by itself. I rather enjoyed that, even though the writing was incoherent. It was understandable but did not make any sense. It did, however, almost rhyme.
April 14, 2000
I have had to begin (again) this journal because my last journal was on a file that became corrupt. Computer glitches were causing my program to begin producing errors and eventually to lock up. Should my children ever wonder why their father wrote so little about them, let them read these words and know it was because these words took so long to write…
April 26, 2000
Writing with this computer program becomes more and more delightful. I have just discovered the „Delete" feature. There is something to be said for reading the „Tip of the Day" when the program boots up.
The computer date is wrong and I don‘t know the real date. Not that I much care. This program works magnificently on some occasions and badly on others. This leads me to the conclusion that I may be stuck in the same impasse as Jeff [a homecare worker]. Jeff has such a profusion of ideas that he can barely concentrate on one before another idea comes forward to take its place. As well, his dyslexia and resultant lack of formal training in writing has barred him from occupational advancement and an outlet for his many ideas. By comparison, I have to contend with a computer program that malfunctions and requires that I check my work, thus interrupting the flow of my thoughts. As I said, we may both be at the same impasse. But so what if my words are laid out as a cardboard construction? Great poetry has never suffered from the effort put into the placement of the words. So again, why would I care?
Sept.12, 2000
As regards the hope of publishing any work, the chief difficulty appears to be my disability. The tape recorder mom purchased for me has the frustrating flaw of making a terrible noise whenever the automatic microphone is engaged. This is really frustrating. Trying to use the automatic microphone doesn‘t work, my hands don‘t work and, for me, the computer is very difficult to use in the DragonDictate Naturally Speaking program. My critical function gets engaged with the writing and I start erasing words and then entire paragraphs. As well, while writing, the flow is seriously hindered by the necessity of correcting the program errors. I am getting less down than I would like. Much less.
March 16, 2001
Fascinating.... Last night, Susie [Patrick’s sister-in-law] came by and ran Norton Utilities through my computer. It is very noticeable how much quicker the computer is operating. This is a great aid. It‘s been my own fault to have not taken advantage of what this computer could do for me. Susie ran Norton Utilities at my request because I had been having a number of crashes. Unfortunately they have persisted and this is frustrating. So I‘m saving a lot. I may have to replace my hard drive. Deborah doesn‘t want me to do this because she has lots of other places she wants to spend the money.
Fascinating, as well. Someday the book will be written, but not by me, but not by me.
May 18, 2001
What a workout! Absolutely brutal and then some. I thought it would be easier - just set up a calendar on my computer and decide whether to back-date it like this journal or forward-date it for the sake of conceptual thinking. I chose the latter and will probably rue the day. Oh, well. No stone like one unturned. And promptly trod upon.
May 22, 2001
… Creating a calendar on my computer is, in fact, turning out to be a more laborious process than first expected. It is necessary to check and re-check the calendar several times, then record the proper notations on my computer calendar, then continue by reporting the notations in the proper format on the computer again, then check the time, date, and note again and again and again, ad nauseam. Not to mention the joys and limitations of this stupid program. Which is so stupid that I should edit and correct this paragraph. But I am too annoyed at how time-consuming the process would be so I am just going to move on.
July 5, 2001
I am deaf, deaf, deaf. The wonderful combination of fingers which root around in ears and a genetic pre-disposition to excessive production of ear canal wax means that I am learning even more about differing types of disability – interesting, that. Speech becomes garbled and distorted, the volume levels of the voice become confused; I experience ear popping, strange spatial distortions, and changes in scalp sensation. Weird, weird, weird. Things are so confused for me, in fact, that I am having difficulty using this program.
You teach me one thing. My war will always be slow. That‘s just a function of my disease and my different disabilities. That‘s okay. I will always have more projects I would like to do than those I can do, or will ever have enough time to do. That‘s not really a bad way to be. People are always trying to finish the unfinished symphony. I don‘t think they get the point. I really don‘t think they get the point.
September 20, 2001
I am working today without the ability to have the computer read my work back to me. Unfortunately I think my speakers are turned off. This may have happened last night, if Deborah was using my computer and did not want to wake me. Or else the computer is malfunctioning as a result of her work or its old age. I would turn the speakers back on but unfortunately they are at the back of my desk and I am unable to reach them. I will ask Felix [a homecare worker] to try to do it when he arrives in another hour. I would write that it is interesting to work without reviewing my writing, but it isn‘t. I am forced to move my cursor back and forth a fair bit. Well, such are the trials and tribulations of men and machines, especially half blind, crippled and aged ones. I mean, half blind and crippled for me, and old for the computer.
I realized that I wish to write well in this journal in order to maintain my interest if and when I might choose to re-read it. If I am to be my only audience, I should at least enjoy the work.
Boy, my lesson of the day is to strike while the iron is hot. Yesterday I began writing a piece about an author lamenting the lack of imagination in most works of fiction. It was such an excellent idea at the outset but one day later, while the idea is still excellent, my enthusiasm for the idea has paled. Why? Is it that the act of writing is too hard? Certainly, my method is harder than that of other people, but probably easier than it was for Shakespeare. Quill pens and parchment are no kindness to the continuity of human thought. Yet he persevered. Oh well - so shall I.
June 6, 2002
What a frustrating experience! I just tried to do some „Stream of Consciousness" writing on the computer and failed miserably. It wasn‘t my thoughts that weren‘t flowing, this time it was the stupid computer that blew it. Something glitched - I don‘t know what - but the computer stopped talking, froze up, and I was fucked. I tried re-starting the computer, tried the program again (not once, but twice) and now it is working but only slowly. When days start like this they have gotta go up. I mean, they have gotta go up. They can’t go down.
July 5, 2002
The best metaphor I can think of to describe my relationship with this computer is that of the grizzled Western prospector and his relationship with his balky mule. The machine is ornery, stubborn, stupid, and as like as not to ignore.
July 14, 2002
If this thing still works, still understands anything of what I am trying to say, I will be amazed. Probably most of my computer‘s problems are a result of my own neuroses. I am treating it much as if I were a bad parent who is worried he is passing his character flaws onto his children. Honk! No such luck! This thing doesn‘t have brains - this thing doesn‘t have comprehension! This thing is no further on the evolutionary scale than a rock. Admittedly, a cleverly organized rock, but no more than that.
On his search for the story
Saturday 16 October 1998 (I think)
Lately, I have spent some time thinking about what work I feel is important and why. It has occurred to me increasingly that I have been given the opportunity to do anything I want with my life. The issue of „what do you want to do?" This is more complex than I first assumed. It comes down to what is the human work which I think is most important. What is the work that I think is of most value and why…
Friday, March 26, 1999
I have so many things to write about. Last night, at supper, I declaimed, „I wanna be a mountain, a pimple on the face of the earth!" And my daughter replied: „Popa, you can’t be a mountain, you‘re a person." Nothing like a 20th-century realist to dash cold water on metaphor’s illusory heights. Oh, well. It isn‘t the first time.
Nevertheless, a lot of ideas. Voyeurism isn‘t as interesting as action. Nor is reflection and explanation as interesting as action. Action is required to tell a story. Someone did something. A story is not someone thought about doing something.
Monday April 5, 1999
There is something about reaching into the essence of experience in order for it to be genuine. Looking down at the Grand Canyon is not the same as whitewater rafting down the Colorado River at its bottom, nor would it be the same as living on the bottom. When does the person move beyond being voyeur and become a resident or traveler? What are the criteria and who is the judge?
I thought last night that the idea of being a hero for someone was an interesting idea to explore. Never considered myself worthy of being a hero for someone.The choices made in the pause before a breath, Before the rush of air that brings the motion and thought,
The decision is made, need and criteria completed, In a single mind, a hero is born.
What a strange choice, to select for adoration another human being. Is that what we do to lovers? Even in the first bloom of passion? Or in the moments of lust? Perhaps embarrassment comes when our lover’s humanity is revealed. Perhaps love is kindled when whatever greatness our lover has is revealed.
Monday May 3 1999
…It occurs to me that a story like "The Purpose of My Life" could ask a very wide and fascinating question. If we have reached the point in history where there is nowhere else to go then human beings will have to address what is their purpose in being.
May 6, 1999
I spent the day reorganizing files and reading the 23nd chapter of Moby Dick. The chapter is titled „The Lee Shore" and is a description of why a man called Bulkington would choose to return quickly to the sea again following a long sea voyage. In this short passage, Melville describes Bulkington by describing his reasons for going to sea. He does not describe the physical characteristics of the man but rather an idea that the man embodies. The metaphor of the ship at peril from the wilds of the open ocean is used to describe human longing for something beyond comfort. Melville gives flesh to an idea of struggle and choice and endeavor and opposition. Melville applauds Bulkington and Bulkington‘s endeavor. It is a brilliant description and a clever means of making the transition, from the ship leaving harbor and the open seas.
Last night while watching television, I saw myself reflected in society‘s mirror. I watched a fairly sensitive portrayal of a MS mainstay and even there I did not enjoy what I saw. I am now a stereotype. I am the „MS guy." Frustrating but inevitable. Some people make careers from this stereotype and the super crip[ple] misconception. I didn‘t and don‘t want to do that. I am attempting to be something beyond a stereotype of myself. Like Bulkington, I prefer the open seas of just attempting to be myself.
Tuesday Aug. 24, 1999
…Other reflections: I have been rereading journal entries and have been pleased with my writing and my ideas. I am a good communicator of my thoughts. These things mean only that I can communicate, not that I can write. Writing is communicating in a manner organized both to communicate ideas and simultaneously evoke feelings. I don‘t know whether I can do that.
July 21, 2000
Well, I feel like death (not that I know what that feels like). Still, this morning I woke up fine, but now I feel like shit (not that I know what that feels like, either). There is probably a letter [referring to the piece he was writing, "Letters to Deb"] in just feeling like shit. There may be a problem with Heaven. Not enough opportunities to feel like shit. There is definitely a letter in that.
There may also be a letter in natural catastrophes. I also want to use the phrase unnatural catastrophes." Interesting juxtaposition of the two ideas. Remember the tornadoes in Alberta. Remember the episode of ‘X Files’ about the man who was carried away by a tornado after he had kidnapped children. There are so many letters if you just look for them. Write a letter about doing the obvious or not seeing the obvious, using the example of „The Old Man and the Sea" by Ernest Hemingway and the fisherman‘s response about how to save a large fish from sharks (just put the best parts of it in the boat). Possibly the subject of the letter could be a place in Heaven called "The Glaringly Obvious".
It is strange. I began this entry by feeling bad and complaining about it. Now, it seems redundant to note that I wanted to make a point about how important it was to write every day.
Supposedly July 26, 2000
Is writing more important than re-reading? I find I‘m bored with past journal entries. Probably just because they‘re so short. I am learning so many strange lessons by growing up. Unfortunate that I have chosen to do this at such an old age. Sometimes I think that I am learning life‘s lessons in the wrong order. Whatever small amount of empathy I possess seems to be hitting me rather late in life. Ditto for sensitivity. Most alarming, that. I wonder if we die when we have learned our share of life‘s lessons. Probably a little too neat and tidy to expect that. Much too just and compassionate. Chance and evil must be given their due, too.
It is more difficult to write than it is to write or talk about writing. I‘ve been working on a story for the better part of a month - and it is harder. The idea came easily. The exposition and setup for the plot came easily. Unfortunately, all I had to do was run into one badly written paragraph and I was screwed. So I‘m not too pleased with myself right now. It is so easy to give up and let yourself be racked with indecision. Like all other persons, I am too familiar with my failings.
I‘ve got to write. Otherwise, there will be nothing. No purpose to my existence. There will be little enough purpose even if I were to succeed at writing but without it my life would be meaningless indeed. Well, then, what am I left with? Nothing. Or maybe something smaller but more profound. Maybe it is just the effort, just the work, which makes us what we are. If that is the mark of a human being, it leaves many of us outside the box. Maybe that’s something that needs to be written about - that too many of us are left without purpose, because we lack the mark of the beast.
What a frightening concept. That we all find our purpose in our work. Left without it, our credibility is gone. We become less than others and less than ourselves
Oct. 15, 2000
The second letter ["Letters to Deb"] was finished on Friday Oct. 13.
Well, today I learned several things. First, I had better write down stories and information when I get it or I will forget them.
Writing notes:
…Countries can be considered like companies. Government is the cost of administering the resources used to produce the Gross Domestic Product, social services are also expenses incurred to maintain deterioration and replenish the inputs (human beings), and the product produced is time. So if the cost of administration (all levels of government expense) is calculated in comparison to revenues, then government and administration considered comparatively with businesses is cheap, cheap, cheap. So a right-wing fink who believes in eliminating taxes can just fuck right off. A great letter on the left right political divide called The Cost of Doing Business…
Remember the minnows at Camp Shawanaga for the letter on the best times of my life.
At the end of the first letter:
Well-written, but it took a tremendously long time. My disabilities may require me to write less than a paragraph a day. That‘s fine. I am already so addicted to the process that I miss it if I do not write. The first page contains less information than I thought that it would; however, I think I found a natural ending point.
The beginning: okay - I wake up dead. I don‘t even know I‘m dead because I have no reference point because I have no sensory input whatsoever. What do I do? I choose to do something and the Big Bang erupts. Probably because it‘s the only thing I can think of. I just wanted light. Then I‘m left watching the formation of the universe. Did I create this or am I a passive spectator?
I have to begin with an examination of my body. This brings into play the question of how important our bodies are to us for the purposes of self-identification and reference to the external. What would I have done if it was not my own body? What would I have done if I had kept my eyes shut or spun my mind in another direction? What an overpowering sense of relief to discover my own body, naked, floating, as light strikes it. At first I had been beyond light, but now, as I begin to speed time up, the universe is flooded with light from all directions and from stars all around me and I am overcome by the universe‘s magnificence.
But what does it smell like? What does it taste like? Am I cold? Am I hot? Am I limited to seeing in one direction? Am I given any answers? Am I given any questions? Is there any communication at all from anybody?
So much has to be addressed. Certainly, there are any number of possible reactions - joy, relief, shock, or abject terror.
January 24, 2001
I have run into my first temporal problem [in writing "Letters to Deb"]. This is good. It demands of me that I solve it. It will also make the story stronger.
When do I write the letters? When do I begin the story and why? I have to write about things after they have happened because I couldn‘t have the ability while they were happening. So I have a bunch of experiences and write about them after I develop the skill. I take on letter writing because? Possible answers: It is a means of becoming acclimatized. It is because I miss Deb. It is because no communication between ‘here‘n‘now’ and Earth does neither any good. Because I do not understand that the means of communication between ‘here‘n‘now’ and Earth does exist but gets changed into something which humans fail to recognize. Possibly because of limited capacity, possibly because of intervention by God, possibly because of…?
… Perhaps life and death are taken on faith. Why you believe what you believe is simply a matter of upbringing and perhaps the failing of my family was that we were taught to believe in kindness and in ourselves but not taught a great deal else. Perhaps I have always longed after not seeing both sides. The single dimension is so much easier. Is there a skill or a strength in not being uni-dimensional?
April 3rd, 2001
Astonishing. I started working on „’Tis the season to Kazoo," and it has taken me a great deal of time just to get interested in the project again. I think I have now. The first story went 21 minutes - which surprised me because I did not expect it to be so long. I will fill up the rest of the first half of the tape with the second story, which I will embellish. It will be the one about the giant tomato. The third story will be the one about the never-ending conga line and the fourth story will be about climbing the rainbow and sliding down to the Christmas tree in the town square…
September 10, 2001
Last Saturday night, Deborah and I went to a "dance" party. I was introduced to a woman named M. Seven weeks ago, M. was diagnosed as having MS. She lost vision in her left eye, and was short-listed for an MRI. Her story in short is relocating from Toronto in order to take a position at a university, the breakup of a long-term relationship, and, hardly coincidentally, her being diagnosed. She is currently in the shell-shocked but still "phoney war" stage. I wish I could offer more than an ear and information, but that is all anyone actually can. I do not think she realizes how difficult it may become for her. A network of family and/or friends is crucial. She may be able to make a go of it, but it will be incredibly more difficult.
September 11, 2001
…What to say of this tragedy? That war, in any of its myriad of forms, is pathetic and stupid and disgusting? That Americans, and Canadians, and every member of the human species, has shown difficulty in being able to distinguish between systemic and personal forms of violence? Between coercion by means other than violence? Or is there some kind of sacrosanct step that differentiates between violence in its passive and active forms? I don‘t know. I don‘t have the answers to half the simple questions I pose… I am saddened by the choices being made by those around me. By those who share this existence with me. But I am certain: their answers to these questions are clearly inadequate and will bring no satisfaction or benefit to them in the end.
September 25, 2001
… I had an interesting thought. If I were not to tell people that I had MS and changed the title of the book about myself, then I would keep getting multiple sclerosis as a surprise. If I could do it, it would be a gigantic hook. If I could do it…
November 19, 2001
…In my notes on writing projects, I just asked myself the question, why add to the literature? It is more profound than I originally thought. And then I thought: why add to the literature? Why add to anything? Especially when there are reasons, good reasons not to. The only possible answer is hope. That we do not know - absolutely know - everything.
November 21, 2001
This is frustrating. Doing a journal entry for nothing more than trying to solve writing block. Well, I‘m sure Ernest Hemingway probably did it, too. Or else he had other tricks. My blockages are just a result of trying to work within the confines of this writing program. I‘m a lot better off than a cockroach that has to dive headlong onto typewriter keys. Shades of Archie and Mehitabel the cat…
…So, I‘ve got the story, I‘ve got the ending and I‘m frustrated with the beginning. I‘m probably just tired and bogged down because I am tired. Or else because I am frustrated. The combination of being blind as well as mobility-impaired is frustrating. And boring. And stupid. And pointless. I don‘t know whether any society has ever had positive and affirming roles for persons with disabilities to play. I don‘t think societies are constructed to accommodate the emotional needs of its (their) members. I think that this is probably a major flaw of our society. The pursuit of the economy, with the political apparatus providing the power behind it, has totally divorced itself from the emotional needs of the society. Period.
Suffering? Not our problem. Humans have suffered forever and will continue to do so. The catchphrase, „The poor will always be with us" is just a code for "we don‘t care if they suffer". Certainly groups within societies, and between societies, come into violent conflict, but this is usually in order to protect their members. Strange, strange, strange.
Jan. 8, 2002
…On "This Morning," Bob Carty interviewed Gregor Wolbring. He is a scientist at University of Calgary. He discussed genetic manipulation in order to try to avoid disabled adults. He addressed problems with technique, societal attitudes towards disabled people, potential for societal changes to class configuration and introduced societal vs. medical model of disability. Nothing that I had not thought of, read or discussed before. Nevertheless, interesting.
Jan. 28, 2002
On the CBC radio program "This Morning", I listened to an interview with Nora Whitney. Her son, Lucas, has autism and is receiving a treatment known as Applied Behavioral Analysis. She asserted that this treatment has a success rate of 47 percent but is only being funded by the Ontario government for treatment of children until the age of 5. She argued that people are capable of learning throughout their lives and that the government of Ontario should support this treatment to a much later age. The treatment breaks behavior down into very simple discrete elements and teaches the child the appropriate form of behavior for each. The treatment regime is expensive because it is a one-on-one exercise. Current costs are approximately 62, 000 dollars per yea, however full recovery from autism is possible. Given that a lifetime of institutionalization is the usual outcome for these children at a cost to the taxpayer of approximately 2.3 million dollars over a lifetime, the treatment is inexpensive by comparison. During her radio interview, Nora Whitney provided a knowledgeable and impassioned plea. That she was on the radio provided me with the certainty that there are rays of sunshine, that there are rays of hope. Certainly Nora Whitney had her own agenda. She did not dwell on possible failure, on the expense of failures , on the success rate over time and duration of recovery, probably because the treatment is so new that many of these answers do not exist. Nevertheless, it was a ray of hope.
April 24, 2002
Michael Ondaatje took ten years to write „In the Skin of the Lion." I think he had far fewer hurdles to overcome than I in the simple process of writing down a single sentence. Perhaps I should not despair.
I just re-read this journal file. Not as good as I would have hoped, but far better than I expected. It is not a journal of activities but of ideas. At least my mind is active, if my body is not. This morning I wrote a poem about Peter Gzowski. Not good, but let it be a start. I have, in the past, been ashamed of my shames. Even the reading of science fiction was a shame. Malabar was a shameful indulgence. Someday I am going to have to write something about the shameful indulgences.
April 29, 2002
…I think that, perhaps, in times past we used the effects caused by theatrical tragedy to provide us with experiences that were part of the growing process. Radio pieces can provide something like this, as can novels. The imagination of the inner eye is so much more powerful than that literal medium. I wonder if we are using other media to replace face-to-face storytelling.
I am working on a story entitled, „The Emperor of the Air." In light of this, I wonder if the story shouldn‘t be called, „The Emperor of the Inner Eye."
June 9, 2002
Dear Diary,
Outside, it is raining torrents. While Deborah has been provided with the opportunity to take Cailum and Becca to a play at Manitoba Theater for Young People - by the gift of a few tickets from some neighbors - I am left with a moment or two to write. Given that I had nothing pressing to record, I was given the opportunity to reflect and it occurred to me that writing in this journal is a lot like performing a speech in theater. It is important to set place, person, purpose, before addressing opinion and resolution. You have to answer the ‘who, what, where, when, how,’ before you address the ‘why’ question. As soon as the ‘why’ question is answered, there isn‘t much more reason to listen.
How does this relate to my journal? If I address the journal as a person, it becomes the object I am writing to. It is much easier for the audience to relate to an object, even an empty chair, than an empty stage. It helps everyone’s focus. So, the words „Dear Diary" become a focal point and set the context both for me and for the reader. The reader becomes more than a mere observer of a conversation between me and an empty chair. So, too, comments about the weather provide additional ‘place’, as do comments about Deborah or our children. Even comments about my state of health could do so, provided they are done carefully. As I have noticed before, health is not something people are comfortable having discussed in front of them, especially if they think it causes embarrassment for the individual making the statements.
…Yesterday was our garage sale and block party. It does seem to me increasingly that life, my life, comes in stages and that the stage we are moving into is middle age. We seem to be doing it more comfortably in the last two days than previously, though. The garage sale, in which a house cleaning of a particular sort takes place, is a ritual of the middle-aged. Deborah and I sold many of our paperback books and she kept describing what she was doing to people as ‘letting go of parts of her life’. I liked that. It spoke somehow to letting go and putting into place and of having learned those lessons we needed to learn in order to survive. Perhaps that is where the fascination with narrative comes from - the need to survive. I have thought this thought before, and written it elsewhere, but it is pleasant to witness this concrete physical example of it taking place. We are offering the lessons we have learned and providing others with the opportunity to learn them. Pleasant thought, that.
June 10, 2002
…My brain is really cooking today. In the course of writing the above two paragraphs I have already thought of three potential themes which warrant addressing. Firstly, that the battle between the forces of Al-Qaeda and the United States does not seem real to people like Deborah or even of interest to her. I think it is more than that they recognize their powerlessness in the face of the struggle. I think it is more than that. Damn, damn, damn, and blast! There is a shattering of my thoughts! Before I can even get them down, because of this stupid laborious writing process, they depart from me as if they were oil and my brain was a sieve. Damn. Oh, well. It‘s not like I haven’t written about that before.
October 2, 2002
…Yesterday, I completed a version of „Preface to the reprinting of ‘The Stories in the Attic.’" It was strange. The story did not turn out to be a story but it did, eventually, go somewhere. I learned a lot while writing it but I am left with the question, - what is a story beyond the ‘who, what, where, when, how, and why’? I have learned that there must be some forward flow - the protagonist must do something. That is very difficult in the description of a person‘s life. The span of time is too great.
Undated note:
There are a legion of reasons why I must fail as a writer. Even the most cursory of glances reveals in stark display the necessity of this truth, I am disabled. I do not cower behind it. I am past any pretense at dissembling. I could hardly do so given my wheelchair, my impaired vision and my loss of motor control in my hands. These three things alone are sufficient condition for my inability. So I wear them instead as my badge. I pronounce in silent victory that I am special among men. I am a struck down innocent. I am a victim of nothing but chance and random circumstance and their mute testimony to the fact that it could happen to you too. I bear no malice nor envy either. I am stoic in my sufferings and ask nothing from you but that you make no demands of me. My mute testimony purchases for me for the right of failure continued and your moderate indulgence. In return, I tolerate your well-meaning faux pas’s and solicitous guilty condescension. What a wonderful pact we all have made to accommodate the reality of our shared existence.
On his Battle with Depression
Tuesday 19 January 1999
…My aging has taught me about life and death. Allan Simpson died unexpectedly following complications from surgery. It was a shock. Judy from across the street also died. Her heart transplant never occurred. In both instance, I knew the persons involved, but not well. I have learned that when your life ends, everything just stops. Your work is over, memories are all that is left and even posterity is cold comfort while staring at the ceiling of a coffin. I did not recognize life before in all its myriad phases.
March 19, 1999
...The final gasp of the 20th-century entertainment experiment in displaced existence will reach its climax when humanity discovers that our entire lives have just become reruns. No doubt we‘ll keep on watching.
April 23, 1999
Carol Shields is being treated for cancer. The vitality of the woman has been greatly diminished. The threat of that disease to her life makes me more aware of the precious nature of my own time. It is scarce and not to be wasted. If there is a grand design, perhaps the purpose of disease and death would be to acquaint the other people around us with the value of their lives. Perhaps the entire planet is one big organism with its various parts learning about their place in its organization through the lives and deaths of others.
July 5, 1999
The last six days have been spent in the hospital. I had another urinary tract infection. Not pleasant, but I had the opportunity of having consults with a neurologist and a choking specialist. I was advised that my choking was being handled appropriately, and that I should take my anti-spasm medications. I was satisfied with the business, although I regret time spent in hospital. It is a necessary waste. I also learned that I have been missing meeting new people, which was an opportunity provided by the hospital visit. I enjoy meeting new people – even though what I have been reluctant to admit to is the vulnerability exposed by my need to meet them.
May 19, 2000
I don‘t have to do anything but sit here and demands are still placed on me. Emotional demands of supporting other people are the hardest. I have one home care attendant whose husband committed suicide, one attendant whose sister committed suicide in the past, another attendant who is going through marriage counseling and he decompresses himself on me, and it is not like I don‘t have enough problems of my own. Last night I struck Becca. I was in the wrong completely and without enough patience and I made the choice to do it and I did it. I cannot support other people unless I can solve my own problems. I have got to treat her gently both verbally and emotionally. I want her to remember me happily.
June 29, 2000
…I am really beginning to lose the use of my hands. Oh well, another bodily extremity consigned to the ornamental.
July 20, 2000
Three weeks away from the computer necessitated by family visits and returning to work is about as much fun as having teeth pulled. There is no interest in the heaven project ["Letters to Deb"], I have no interest in writing in this journal, and I have no interest in writing. How much easier to sit and listen to the radio. How much easier to while away the hours and not have to worry about the horrible possibilities of failure or the natural brilliance of my niece‘s writing. I know why she can write so well and I know why I have such difficulty and none of that knowledge helps me at all. What a whiner. Oh, well. Back into the breach.
Sept. 14, 2000
Today, my Victorian Order of Nursing nurse Sonya told me of a new client. A 17-year old who was diagnosed with MS. He got out of his wheelchair and while onstage walked to accept his diploma. He received a standing ovation. Nevertheless, he has got an incredible story to tell. He may never work, he may never have a lover, but he will have a fascinating life. Cold comfort, that. I wish I could offer him some magic. I wish that I could. As with K. and her suicidal aunt, there is nothing that can be done and little that can be said.
November 9, 2000
Today, my VON nurse, Sonya, told me that a 40 year old friend of hers who had MS died unexpectedly. Sonya has been visiting me once a week for the past couple of years. She seemed very disturbed about the sudden death of her friend. Apparently, her friend aspirated on her own vomit while in bed. She had been living with a rapidly progressing condition and possibly had been suffering from pneumonia as well. Sonya used the opportunity to suggest, once again, that I should get a pneumonia vaccination. My choice about quality of life over quantity of life takes on more serious implications at times like these. The bravado of a young man now has to become an older man living with the courage of his convictions. It was easy to be courageous when I was foolhardy. I still believe in my convictions. It is not that we wish to remain alive because we fear death. We wish to remain alive because we do not wish to leave the only thing we know. This, and that we are disturbed by the absolutism and the immovability of death. So I am left with my convictions and my choice not to get a vaccination.
Nov 14, 2000
I had most poignant conversation with X, the least sensitive individual I know. In point of fact, he is turning out to be one of the most sensitive individuals packaged in the least sensitive exteriors of any of the individuals I know. The conversation we had evolved around a client of his of 11 years. The clients wife had died of renal failure and her death was expected. She had been a difficult customer both for X and for her husband. X had made her husband laugh by asking her if she liked sex and travel. These were code words for "Fuck Off." Nevertheless, her husband was in mourning and X was suffering as a consequence. We had the most curious conversation about death. All of the usual platitudes about the hereafter and not knowing what comes next but living life for today. I don’t think it comforted either of us. I pointed out to X that there is no comfort either in his theory about alien monkey bitches and he acknowledges that there is neither any found in religious doctrine either. It is the condemnation of a secular technologically consumption oriented society. We are condemned to eat our own beliefs.
Ignorance is bliss. Maybe that is the reason why there is no contact between heaven and earth and why we have no knowledge ZZZ (I take it Patrick went off to sleep, then woke up and poked fun at himself)
Nov, 28, 2000
God, please help me. For the sake of my family, for the sake of my children, and for the sake of my partner, and lastly, for the sake of myself. I know that when hunger strips my rationality that I cannot cope. I know that I lose control of my emotions. I know that my fears, especially of my inability to cope with physical demands, take hold. But that does not justify anything. That does not justify ill treatment. That does not justify emotional abuse.
…I put her under so much stress that she cried out repeatedly in her sleep. I did these things. She is a wonderful child. Her instincts are good. They are excellent. Multiple sclerosis excuses nothing!!!!!
I cannot forget these things. And I will not excuse myself or justify the things I have done. Deborah was forced by my behavior to take Becca into her room and try to explain her father‘s bad behavior to her. Oh yes, I apologized to them both profusely and honestly and with tremendous regret. But that is too little, far, far too late. Rebecca came to accept my apologies but it took time, and as with her mother, I have scalded the relationship again.
I will war with this until I die and probably beyond. I am crying now. I will not and I cannot do this to my family. I love them too much.
God, please help me. In moments of stress, I only hope I can remember that refrain.
January 17, 2001
Ah, we little boys. We all deify our fathers. How else could we be? They are our security, role models, and eventually our adversaries to overcome. We work our way through these mantles our whole lives and eventually we just become too tired to go on with these stupid struggles. Either side, or both, concedes defeat. Thankfully the limitations of human effort surpass the demands of the programming of human survival and we are left with two weary pieces of protoplasm simply content to sit in lawn chairs on a warm summer‘s evening and chew. If a third generation is present, we watch them in an exhausted stupor and rouse ourselves enough to growl at them something inarticulate or comment on their endless energy or inquire about the possibility of more fried chicken.
Somewhere in there, in that endless cycle of male replication, somewhere in there, is something beyond itself. Beyond what it simply appears to be and what it affords glimpses of being. There has to be more in life than the process of life and more than the collection of knowledge. Because knowledge does not appear to have much to do with changing or bettering the human condition. For some people, knowledge has made the creature comforts of human existence easier to acquire and to distribute. But the process of becoming more full of knowledge as a species has not bettered the human condition. We are not wiser, nor better, nor more insightful about ourselves.
Some people maintain that we are not capable of this. Some argue we are condemned to die the same damn fools we were when we were born. Their reasons are endless - that we are limited by genetics, or greed, or God. Frankenstein‘s monster was as much an exercise in self-knowledge as anything else. No wonder he was condemned to destroy his father. Technology was just the means of the monster‘s creation. The reason for his destruction and for the destruction of his father was Frankenstein having dared to attempt self-knowledge. The monster is tragic because he is a victim of his father wanting to know more about the human condition. I wonder if the parallel can be drawn for all fathers and sons. Probably.
This is wonderful material for the letter about my own father and leafs into it nicely.
January 21, 2001
The Latimer decision came down this week and the Supreme Court found him guilty of second degree murder. He will now serve a mandatory ten-year sentence in the federal penitentiary.
I have listened to a number of complex and sophisticated discussions on the radio. I am left with the feeling that society did not serve anyone in this situation well. The family was not provided with sufficiently adequate resources to care for their daughter. Alternatively, neither was Latimer given the tools to understand and to undertake the care required.
I am saddened by the whole business.
Feb. 21, 2001
Ye Gods, it is so much easier not to. Not to think, not to write, not concentrate, not to expend energy, just to sit and become a passive receptor. It is so much easier. Is my life any less if it is unrecorded? If no monument to my vanity is left standing? If no legacy is left for those who follow?
I so love repeating the philosophical conundrums that have plagued humanity since time immemorial. Apparently, I do not mind clichés either…
…I just had an inspiration. If I really want to ever have the opportunity to make a contribution, any contribution, to the "Canon of Literature", perhaps I’d better write about my personal medical experience. Proposed title: Another Inspirational Crip Guy Book. Maybe after that, if I prove my marketability, I might, I just might, in this the best of the best of all possible worlds, I might be given the opportunity to prove what I can do.
…I had the interesting experience of listening to a listing of the consequences of secondary progressive multiple sclerosis on the television program "West Wing." I so didn’t enjoy it I even made certain to watch it again on tape. Sigh. I will not repeat the list here. It gets too dull. Suffice it to say, I shouldn’t beat myself up over an inability to concentrate for lengthy periods. It’s a consequence of the disease. I do have to attempt, however, to undertake and strive. Deborah would get bored otherwise.
April 30, 2001
Assume, with all compassion and contempt, that I will fail at any and all of my endeavors. Why not? The little black cloud which hovers over my head may be a figment of your imagination - it may be a figment of mine - but lest hopes be raised, protect yourselves and dash them at the outset.
May 1, 2001
I must have been in a bad mood yesterday. My computer was giving me a lot of errors but that doesn‘t excuse the nasty entry. Oh, well.
I am beginning to think that my disease combined with my computer possibly will stop me from writing. Or my fears, my glorious fears. I listened to three young critics tearing apart a collection of essays on Ian Brown‘s program, „Talking Books." I was dismayed by their intelligence and astounded by the competent ferocity of their criticism. They were so skilled, so honed, and, no doubt, so correct. Well, fuck them. And fuck all others who tear up their criticism to shreds. Maybe I will never write anything publishable. Or, if worthy of publication, then unsellable. So what? So what? So what? I have to love what I do or else there‘s no reason to do it.
June 4, 2001
For the past four days, Robert has been visiting us. It was a strange visit. It took me a long time to realize that he is more tired than I am. That was frightening. I would not like if his life were to parallel our father‘s too closely. It is very strange for me to think about the fact that I have invested in my family my need for security. Probably because of my inability to take care of myself. I can‘t help wondering what that has taken from my family and from Deborah.
I had an interesting idea for a play. Somebody had to go to Elsinore Castle, after Hamlet had wreaked havoc, and clean up the mess. Who did it and why? Someone directed by Fortinbras? What issues could be addressed by such an investigation? Issues about inquiry. Issues about class and convention and war and peace.
Imagine a war-damaged Fortinbras returning to Elsinore Castle following his campaigns. Imagine his shock at finding the castle in disarray with the royal family dead and the king‘s high counsel killed by the crown prince. He could turn to his only trusted….
September 13, 2001
I think I have become infected with my mother‘s disease. Simple kindness. Terrible. It drives us to an ability to see all sides of a given question or problem and feel genuine sympathy for all who have taken positions on either side. It drives one to a personal position of relativism that can only be resolved by using a yardstick of kindness to measure the potential damage of future action. Unfortunately, the disease is very taxing - emotionally and spiritually - and inevitably leads to a state of worrying. The only known cure is to remove oneself from situations of conflict (either personal or societal) and live in a state of seclusion or semi-seclusion. This state can be achieved through physical or mental removal from wider social concerns.
September 21, 2001
I‘ve discovered yet another reason to limit my entries in this journal. It‘s too damn depressing. Listening to CBC on the radio is even worse. I hear so much information and can see so many variations that I feel immobile by the time I get away from the radio. The solution? Don‘t listen. Maybe the hippies had it right. Drop out, turn on, and tune out.
Once again these words are written without benefit of being able to re-read them. I still can‘t get my speakers to work, although this morning when I turned on my computer the volume on the speakers when Windows booted up nearly killed me. Tonight, I will have Deborah look at it.
September 26, 2001
…Went to the mall. I was exhausted when I got home, although I had done nothing even faintly resembling physical effort. My disease is getting worse. What a drag.
October 19, 2001
It is remarkable to me. I have spent the last twelve days being sick. One and a half days were spent sick at home and the rest were spent sick in hospital. I got out yesterday evening and I am tired today.
December 18, 2001
The last few days have been difficult ones for me. Excessive fatigue has combined with boredom to depress me during the day. As well, I watch Deborah coping with very young children without a break either physically or emotionally. As a result, she is exhausted and I have to address my frustration with the kids and my guilt over not being any help to her. Same old complaint and same old refrain. There had better be some change found in our lives.
Life in a state of nature can be nasty, brutish and short. Perhaps so, but the process of death can be lengthy and painful. Over the past two weeks, we have all been the unwilling witnesses of one of our guppies killing another. For no reason but that the weaker boy’s of a different species with different colouration the aggressor relentlessly chewed off the dorsal fin of the weaker. It was a cruel and painful death and it was a kindness when the tortured victim finally rolled over and floated to the surface. Perhaps the knowledge that life is nasty, brutish and short….
May 29, 2002
…The purchase of time. The ideas that purchase time from one another and from our existence and that time itself has a purchase upon us.
Plato would have laughed. Look at this, the colourized version of his Cave Allegory. They left the shadows of darkness to shudder at rainbows and light. They walk upon a carpet of discarded commodities carefully designed for their obsolescence. The knowledge, the brilliance, the light. All squandered for the purchase of brief snippets of time. Was the purpose of the human race no more than this? No more than broken plastic and discarded trivia and reckless aspirations? Better left undone. Better left ignored. Better left forgotten. Discard it all. Even this. Especially this.
Vanity of vanities and everything is vanity. Small wonder that small cupboards with mirrors are called vanities! It is nothing but vanity and mandate indeed!
But is there no hope? No rose for Ecclesiastes?
Ha! Welcome to the abyss! Welcome to the polite, solicitous, unforeseen trap with imaginable consequences. Opposition, duality, FX, right and wrong. The little angel and devil on your shoulders acting, always acting. Temptation and the conscience. Here it comes, if you want to hear it.
Hear what?
The mythology. The truth. The lie. The idea that is programmed into the human race. The one thing we all believe and misbelieve simultaneously. That which we deny and accept and accept and deny.
What is it?
The idea. The kernel. The hub around which all of humanity revolves. Shall we say it? Mouth its flavor to the air? The freedom of choice.
That old saw.
They‘re all old saws. There‘s nothing left but old saws. What do you expect from a limited humanity, trapped in its consciousness and the boundaries of genetic comprehension? Nobody asked hairless apes to develop beyond the genetic demands of staying alive.
I am certain that the human race needs gods. If only to give us hope. Perhaps a god or gods, but we are better with them than without them. They may be conscious constructs. They may be unconscious constructs. But, like narrative, our limited genetic comprehension seems to demand of us cause and effect and when the two are inexplicable or unreasonable, we are unable to console ourselves with the thought that bad things happen to good people. There are so many subjects for consideration. The need for gods. The need for narrative. The new gods of the 21st century: fiction and fantasy and unreality and the news cycle.
Last night, Eleanor Wachtel interviewed a writer who described two competing visions of memory. I have forgotten what they were though the idea that there are different, competing visions of memory was delicious to me. I know that there are different visions of humanity - of the past, the purpose of life, etc. - but this was so adroit in its conception that I was saddened to know there are people so much more intelligent than I. I wonder what it is like to inhabit a mind so delightful.
God is a thundershower. The kettledrums of thunder began their rubble-rumble in the distance, indistinct and without edges, building slowly, until the storm is overhead, omnipresent and omnipotent. Who can doubt why early religions put gods into the elemental, always with the storm god as an important deity.
July 25, 2002
Timothy Findley has died. The passing of my generation continues. I feel as though I am the younger child of a large family and I am watching my older sisters and brothers do things before me. Following them into death is not something I need hurry to do. It will come, inevitably, as it does to all of us. But let it be in its own sweet time.
August 13, 2002
Deborah phoned me with news this morning. While traveling in Sri Lanka with his wife, Olga, Henry Enns died of a heart attack. It was unexpected…
Why did I not cry when Deborah told me? Is my imaginative life becoming so much stronger than my real one? Was it that I had already imagined his death, and the deaths of other people, in order to prepare myself? Why do we cry when people die? Is it for them or us? That our lives have changed and we have been exposed to a harsh reminder of our own mortality? Why?
August 13, 2002 - later the same day
Obviously, Henry‘s death did not hit me immediately. When I was speaking to Deborah at 12 o‘clock today, she told me that my voice had sounded distant. I had known something was wrong when she had left the voice message for me. How well we two know each other! Later in the morning, while talking to Alex, the emotional effects of his death struck me and I began to feel strange. I phoned Deborah back and we spoke for some time about it all. I have had more time and the emotional effects have become more pronounced over time. I sat on the front porch for about half an hour and did some thinking and remembering. I just finished speaking to my parents and telling them what happened. I feel quite sad about it all now, even though I am certain Henry would not have wanted that. How strange. In death, no one really gets what they want.
August 22, 2002
Yesterday, Deborah and I attended the funeral of Henry Enns. It was held at the church where he and Olga got married, in Steinbeck. It was attended by approximately 1,000 people - including individuals from the provincial government, the Canadian government, development organizations, disability organizations (both local, provincial and national), his church and, of course, his immediate and extended family. The service was well-organized and very handsome.
Deborah arrived before me, and she and I sat together in the front. As a result, we left the church right after the immediate family and so were on display as we moved up the aisle leaving the church. I was very proud to be with Deborah. I don‘t know why or how she chose to be with me or is still, but I consider myself a very lucky man. The trip going to and from Steinbeck was difficult for me because I was very tired on the way home but, with the help of others, I made it. The service was two and a half hours long, so I had lots of time to think about Henry - and my life and his life, by comparison. With the death of Henry and of Al Simpson, the only examples I have had of a life with disabilities that I would aspire to are gone. From now on, I had better start finding my own way.
August 30, 2002
This morning I am convinced that if the aliens arrived today and spoke to me, I would tell them, „The human race is only a slight evolutionary step beyond a rodent - in fact, hardly not even a step at all beyond the creation of machines in order to better manipulate our environment, which has eroded our planetary environment to the detriment of every form of life on the planet." I ought to know better. It‘s not that I believe in these words, it‘s just that I‘m only repeating them again to myself because I‘m unhappy. Probably I am depressed, or my body hurts, or I‘m unhappy because of the way I treat my family, or for some other reason. Stupid. Futile to waste my precious few brain cells on such folly. Neither the human race nor my family will be bettered by my unhappiness. More reasonable is to remember the prayer: God give me the wisdom to recognize where change is needed, the strength to make better what I can, the ability to ignore what I cannot make better and the wisdom to recognize the difference (or whatever that prayer is, anyway).
My eyes are bothering me. I may be going blind. I hope not. At the same time, I have to admit difficulty holding and manipulating my mouse. Some day, if my children need to find out about me after my death, they can turn to these journal entries. Would that I had strength enough to write them long, richly beautiful entries which gave them life lessons, which made their existence richer by far more than [would] paltry dollars. Given that I do not have sufficient paltry dollars to give them, perhaps wasting my few dollars on them will be enough. Unfortunately, it isn‘t. I wonder if it is better to die unknown and leave the gentle mists of memory shadow you into a figure more beautiful than you really were? Probably, but a life without legacy is a life unlived.
On Domestic Life
Wednesday, May 26, 1999
In other news Deborah is really pregnant. This is what we wanted and there will be a lot of work. But who said life was not to have work or pain? If we did not have these things, we would just be spending our time.
Tuesday Aug. 24 1999
Summer has been busy, although we have not taken any trips. I am reluctant to travel and Deborah has proposed a trip to Los Angeles in March 2000. This would be as a family of four. I do not like the idea for a number of reasons, one of which is that I am afraid. I do not like the idea of being helpless and dependent in a city where I know no one. Certainly my disability has contributed to my cowardice.
In other exciting news, Deborah and I informed our families of the expected arrival of our son. As well, Deborah and Rebecca are in Kingston, Ontario. Deborah is attending a conference and visiting Eleanor/Eamon and Rebecca is just having fun.
April 13, 2000
It has been months since I wrote in this journal. So much has happened in the intervening period. Our son, Cailum Matthias Kellerman Stienstra, was born on December 30th, 1999, at about 10:15 in hospital after a wonderful labor marked by a very short pushing stage and Deborah‘s dilating from 5 to 10 cm. So rapidly, in fact, that Popa had left the room to be changed.
April 14, 2000
Cailum Matthias Kellerman Stieenstra was born in St. Boniface Hospital on December 30th, 1999. He weighed six pounds 13 ounces after a very short and wonderful labor. He gained weight at home quickly and by the time he was three months old was wearing clothing for six-month old children. At the time of this writing, he is very solid and strong and likes to smile when I make funny faces at him.
In the interests of fairness and equality, Rebecca Aisha Kellerman Stieenstra is six years old. She is average height, average weight, with blond hair turning brown. She is very active and very loud. She also talks a lot and sings as well. She also likes my Great Kazoo stories.
They are both great children and I am lucky to have them.
Their mother, as ever, is the workhorse and magic that keeps us together. She provides me with big lessons on child rearing without trying to do so and is wonderful to behold. Someday maybe I will be able to grow up and be just like her.
Yesterday I took Rebecca to the Symphony to listen to Peter and the Wolf. I think I may have slept while she listened. I think she enjoyed it but she is so sensitive to the music she was frightened by the „scary" bits. She had a wonderful time seeing friends and playing outside afterwards. This morning we had a little confusion and difficulty with alarms and she displayed her fear of the burglar alarm. What do Deb and I do here? Is it better to confront her fears and hope to resolve them or to ignore them and hope that they get buried in the flood of memories? Parenting is a lot easier beforehand and in the abstract. This is someone‘s life we are playing with and I am so scared of blowing it. Every one of us, in all of our relationships with each other, face the future with our own personal combinations of worry - and faith that love will see us through.
May 14, 2000
Happy Mother‘s Day. Deborah has just finished hosting a conference here in Winnipeg for about ten women academics from across the country. They are intending to write a book on Canadian foreign policy and gender. Sandy W. attended and it was lovely to see her. I also played host to [a] men‘s group meeting here on Thursday night. Basically, everyone discussed the difficult parts of their lives that were getting them down. The only thing getting me down was my MS so I didn‘t have much to say.
Oct. 15, 2000
Poor Cailum has a cold. I feel for him, but like many other things in his life, I can do nothing. And I really wish, for his sake, that I could.
April 20, 2001
The weather has decreed that, „April showers bring May flowers," and I am a victim of the weather. Or I will be until I get that stupid back-ramp fungus washed off. Rain water is absorbed by the fungus and then the ramp becomes extraordinarily slippery, far too slippery to attempt to go down. So, once again, I am shut in. I have had so many excellent ideas for writing recently. The problem comes from my lack of energy. I really have very little but if I think about that I am concentrating on my disease instead of on more pleasant and life-affirming activities.
(later) April 20 2001
Oh, that we were different. Were I a perfect man, were she a perfect woman. Or perfect parents or perfect world or no disease or no disharmony or no strife. Perhaps all that we can hope is that the love from the good times will support us during the difficult ones. Or else why go on? Deborah wants a family vacation. A good time, a happy time, the time to hold fast [to], when catapults toss dimension and pride and face, and leave no reason to go on. Deborah wants a family vacation. To forget mornings like this one when I batter egos and emotions. For what? For fear? Her agenda, so powerful, so helpful, so thorough, so destructive. Where is my brain? I know better, I know so much better. Her father never shouted. His sense of himself would never allow that. She grew up with that. She called me an asshole. I don‘t want to be remembered as that.
June 25, 2001
Overcast. What a weekend. Deborah‘s Society for Disability Studies conference took place. I didn‘t even realize who they were, despite having been told several times by Deborah. By the time I figured it out, and that I had read their work at DPI, it was all over but for the dance…
Cailum is teething and is incredibly frenetic. Everything gets tossed on the floor. Bad behavior everywhere. I know how Deborah feels. She does share the wealth.
September 23, 2001
The marital relations of a man with MS. I could write a book about it. And certainly my partner in crime could as well. Her book, no doubt, would be rigorous, insightful, and thought provoking. Mine would alternate between rants and adoration. Well, she wanted something interesting in her life... I haven‘t given her what she asked for - unfortunately I‘m unable to do that. Hopefully, I will be able to give her something to maintain her interest. Sadly, I think she has become accustomed to me being Milk Toast, and is getting a rude shock this morning. If so, I blame myself. My fatigue levels and my disease have demanded enough from me that I have abrogated responsibility for many things. I must strive to the best of my abilities to take a few back. Such tempests in our celestial tea-pots. I have a feeling this minutia is so microscopic as to play dwarf to Terror in Tiny Town. Let us hope so anyway.
January 5, 2002
Another year, another journal file begun. Might I make a resolution that the writing in this journal be intelligent, profound and adroit! Unfortunately, like most New Year’s resolutions, this one will probably suffer from the inadequacies of its creator. I wonder if that is the nature and intent of such resolutions - always to exceed the grasp of their creators - sort of a built-in fail safe against the hubris of the human race.
Yesterday afternoon, Deborah and I got rid of the children and went to see the film, „A Beautiful Mind." It was the story of John and Elaine (???). He won the Nobel Prize in 1995 for his work in mathematics. As well as being a brilliant mathematician, he was schizophrenic. He struggled with both his whole life, and was awarded the prize for work he had done as a young man – work which had very wide-ranging influences. It was a cautionary tale for me about the dangers of too much imagination - the pitfalls in beginning to withdraw too much into the pleasures of your fantasies. I may have to watch that. Imaginings are of use, but must be used. They must be a tool toward an end product.
I have always suffered from the pleasure and condemnation and isolation of imagination.
May 29, 2002
There are few sights so pleasant, so beautiful and so poignant, so eloquent of a moment and of a place, as two young girls, perhaps seven or eight years old, strolling to school together on a late spring day. Their heads are bowed together, voices low except when punctuated by giggles. There is such a tremendously important, and yet insignificant, collusion - an innocence so overwhelming that you want to protect it forever. From the rhythmic bobbing of ponytails, to the sandwich-laden backpacks, to the slap of sandals on the sidewalk, it all speaks of youth and beauty, of what childhood should be forever. This is what the human race could do and should do and must do for one another. We can make of the world a garden if we do not lose sight of these single, little unimportant things.
June 16, 2002
What a splendid morning! The weather perfect, the Manitoba Marathon was run this morning, partially through my neighborhood, along Woolsley; race coordinators clapping and cheering contestants on and everyone happy. Contrasted with last night, when Deborah and I went to the movie theater and watched the latest installment in the Star Wars movies, it was a delightful dose of reality vs. unhealthy fantasy. Notwithstanding that the race was over even before I got to the end of the block to watch the stragglers slogging along, notwithstanding that it was an activity which I will never again participate in, notwithstanding that I felt removed and isolated and could not ignore the fact that their Marathon was juxtaposed against the Marathon I run every night and day, I still enjoyed myself.
Those last few sentences sound so bitter in my mind. I don‘t need them to be, because I don‘t feel bitter. I cannot, however, ignore my situation despite the fact that I may be dissatisfied with how I cope with it.
August 3, 2002
I had a journal in which I used to write and record the day‘s events, and my reflections on them. I used to try to „fix" the day more than just [by naming] the day at the top of the page. I would take note of small, specific peculiarities that were specific to the day. I would use an item from the news of the day, or a specific marker such as a birthday or the weather. For instance, today is overcast with little likelihood of rain but it is very cool for August. Another pertinent fact about this morning, he said, is that I‘m writing this in my office at approximately 8:45 a.m. while Becca watches television in the next room and Deborah and Cailum are asleep upstairs. I could note that the house has the beautiful, quiet feel of a home before the hurly-burly of the day‘s activities. I could record that it is my niece Sarah‘s 21st birthday today and I am looking forward to phoning her.
What does that tell you - you, the reader? That I love my niece, that I cherish the few moments that I get in my day of peace and quiet, and that I take advantage of them? That weather is changeable? That I follow events of the world and am in tune with what is going on in the world around me? If an author respects himself and respects his readers then there is not a phrase or a word without purpose. What you write is different than simple scribbling. Writers write for effect. The goal of the effect is what is paramount.
With that word written, my family has wakened up… So much for the silence of the instant before which allowed my daughter the luxury of television watching and my wife the luxury of reading the newspaper. Once more into the breech of family life! Cailum has entered the building (in actuality, just clumped downstairs) and the volume level in the house has gone up markedly. Becca wants Cailum to say hello and pay attention to her, his mother wants to take off his diaper so she can get him on the toilet (where he impresses everyone positively with the volume of pee he issues from his bladder) and both children want breakfast. Great discussions ensue about what to have, with the elder of the two lobbying the younger hard for pancakes. Since their mother is obliging, pancakes are indeed the order of the day. Then off to the basement for frozen strawberries (even though Mom would have preferred had they just taken strawberry jam from the fridge). Then, a happy breakfast – with clothing done by Becca, amazingly.
October 10, 2002
Well, I‘ve forgotten my sister Karen‘s birthday. Again. Sadly, and unfortunately, Karen seems to suffer disproportionately from my forgetfulness. It is not intentional. I reminded my stepfather to remember her birthday and he reminded me. I reminded my brother to remember her birthday and Hugh reminded me. Notwithstanding, this morning, Deborah looked at me and said, „Your sister‘s birthday was yesterday." I am chastened. I tried to remember and I failed. I am not certain I will be able to put into place systems that will ensure I will be able to remember things. Obviously, my mind cannot do it.
At this moment, I am not thinking about my sister and missing her 49th birthday. It is of little importance - I am confident she will forgive me. But I am reminded by my predicament of the man in Oliver Sacks’ book, „The Man Who Mistook his Wife for a Hat". In the chapter I am thinking about, a man had destroyed his short-term memory through excessive drinking and was condemned to living his life in the moment. While I do not think my case and his are identical, there are similarities. Enough, in any case, to be frustrating.
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