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VOLUME 83, Week 1
Below are my Journal entries for the first week using the computer. By coincidence, it was my first week with the new power chair. Names: JOAN Bryant was the Math Dept Chair at Newton South High School. She pushed me in my manual chair into and out of the school for over two months after my hospital stay in March. D, G, and H are wife Dorothy and daughters Gretchen and Heidi. GAYLE was the consultant at the wheelchair company. BILL DEFOTIS was a composer friend who was to die of M.S. in a few months. As for the future: no, I would never write in the blue lab books again; and, yes, the wheelchair did grow more comfortable over time!
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Sunday, 6/9/02
Monday, 6/10/02
Tuesday, 6/11/02
Wednesday, 6/12/02
Thursday, 6/13/02
Friday, 6/14/02
Saturday, 6/15/02
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Sunday, 6/9/02
What is this - another concession to your malingering illness? Well, yes and no. [‘What is this’, asks the interloping reader, ‘a concession to equivocation?’] Yes, because I no longer feel that I am able to write all that I would like to by hand in those lab-books. (Never mind that I just hand-wrote four pages today!) (In fact, I dread the very thought of taking pen to paper. Even the idea of going to Au Bon Pain or Carberry’s fills me - horrors! - with trepidation.) But, then ‘No’ as well, since I do plan to write in those blue books. I think that the distinction will be, that this format will consist of general ruminations on my present-day ‘life’, the life whose daily happenings the blue books dutifully record. So consider this, if you will, a para-journal...
Perhaps I feel it’s needed because I suddenly have a lot to say - more than I can reasonably expect to write by hand. [‘So write with un-reasonable expectations!’] After spending just 36 straight hours flat on my back with no intelligent thought during, it slowly began to dawn upon me (aha - the glimmer of an intelligent thought: to realize one has none!) that my mental life is a horrible void. (So, fine, just a-void it.) What is just as bad, I am a sort of parasite living off the beneficence and goodwill of other people. Oh yes, a charming and witty one, but a parasite nevertheless. A physical and mental eunuch. Yes, charming!
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Monday, 6/10/02
Today I brought my power chair to school for the first time. Joan came out to meet me anyway and open the door. But clearly things were different, as she wasn’t pushing me or carrying my bag. And I must admit: I miss those things! The manual wheelchair draws people together in a sort of harmony: they are linked by one Pushing, the other Being Pushed. They are as one unit. By comparison, the power chair divides people from one another. They are separate entities - one riding in a motorized vehicle, the other walking beside.
There are no doubt some who, viewing the situation of the manual chair, will condemn what they see as an unnecessary sort of dependency. I myself think of Bill DeFotis, who would not let anyone do anything for him (he would protest, e.g., if someone would turn on a light switch.) I admit: I have felt a bit guilty about this - that in acceding to ‘the kindliness of strangers’ and friends alike, I am becoming weaker thereby. I think the situation is not so simple: I choose to profess overt gratitude for any help any person might want to give me. And I have decided not to try and divine whether said person is patronizing. So again, in a general sort of way, the Help/Being Helped relation draws people together.
Yet, the guilt remains. And the reason seems clear: where does one draw the line in terms of how much help one should receive? Lately, I am letting D cath me any time after she comes home from school. Am I weaker then? Probably. But am I too weak to cath myself? In general, probably not (especially since D has begun preparing the plastic bags.) Yet, it is easy to lie down on the bed and allow her to do this for me. Likewise, D. and H. have been doing the dishes ever since I got out of the hospital. Am I strong enough to do them myself? Probably. So there is no excuse for this - slothlike (as I told Yavni yesterday) - behavior.
But I still yearn to be pushed in my manual chair again! I enjoy seeing Joan emerge from the building, and her smiling face at my van asking, ‘How are you today?’ then pushing me all the way to the building and down the long corridors and opening the elevator with my key, and my room is already open for me when we get there and she pushes me down the aisle (clearing chairs out of the way for me/us) and right up to my table (which she herself provided.)
Am I in love with Joan? I don’t think so (I can’t speak for her feelings for me.) Rather, I think I am enamored with Being Pushed, with the Togetherness of that Act...
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Tuesday, 6/11/02
Today I wrote the last page of Journal Volume 82. And I declared therein that this was to be the final volume of the blue lab books, inscribing somewhat pompously and melodramatically at the bottom: END OF VOL.82 - AND ALL OTHERS. Describing this to H (a journal writer herself), I called it ‘a sad day’. One thing that makes it ‘sad’ is the conscious realization that it is probably true, that the days of hand-written journals are over (after 25 years.) That (the conscious knowledge) was not the case with organ playing (I played no more after my service on 6/9/96, though I did not know this would be the case at the time), piano playing or walking (I always thought I’d play/walk another time; but in each case a day dawned after which there would be no more walking or playing.) Of course I could have been swayed by my own sense of melodrama: I may relent in a few days or a month and begin writing in the next Journal volume. If so, I will have to have a lot more stamina and drive than I have now - which would include the desire to frequent cafes again. Somehow I think the odds are against me on this...
Power chairs: they give us more independence, they allow us to go longer distances on our own, we become Rugged Individualists. Which is a good thing in its own way - if one does not mind doing everything on one’s own.
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Wednesday, 6/12/02
Today I told Joan the essence of what I wrote above: the connection between two people when one is pushing the other. I said, ‘It was very pleasant. But I know it took up a lot of your time and effort.’ She beamed and replied, ‘It was fine - it was the only time I got to talk to you.’
Today I spent over four hours at school in a tilt position in my wheelchair. Not only did I not feel better, I (principally my back) felt worse. I was in a weakened state when I arrived home. This alarmed me greatly, of course; for it led to the horrific conclusion that there may be no wheelchair solution to my back woes. I could foresee getting worse, until I can go nowhere - certainly not on my own. (In particular that means: no job.)
But when I talked with Gayle this evening she told me that this is to be expected with the new wheelchair after having sat slouched over in those other conveyances for nearly four years. This feeling (the physical discomfort, not necessarily the apocalyptic musings) is common, and it may take two months to get used to. Well, she is experienced with this business, whereas I’m a relative newcomer to acute discomfort.
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Thursday, 6/13/02
I am at home today and tomorrow: my Juniors have finished their presentations, and they have no exams to prepare for. So Joan told me I need not bother coming to school these two days.
Of course this is a mixed blessing. On the one hand, I need not be sitting up in my wheelchair all morning, and so I can lie down to rest my back (I did this for two hours this morning already.) On the other hand, I am essentially confined to the house for the day (H. took my car to school so that she could come home early and help me get ready for graduation.) (I was just watching part of ‘Nicholas and Alexandra’, and so appreciate more what it means to be under house arrest.) And I realized how - bleak - that seemed to me. What shall I do (I asked myself)? Well, I can write on my laptop (as I’m doing now) - which could include a letter to G. I can also read (if it’s not too blurry)(the Fiction Issue of The New Yorker arrived yesterday.) But both these activities (typing and reading) involve sitting up in my wheelchair; what about my back? Let’s say that I look forward to these activities with not a little trepidation; in fact, it makes me weary just to think of them.
(And tomorrow - what of tomorrow? I will have my van to Go Out. But will I want to go out? After all, I have officially given up - renounced? - hand-written journal-volumes. I suppose I could read as I‘m sipping my coffee. Or I could just sit there and ruminate (like a cow?) All this assumes, of course, that I will want to go out, that I would be able to overcome the inertia, the feeling (again) of weariness that comes about when I think about doing this.)
The second typed letter to G. I speak about the two-sided nature of the power chair, and then of my terror as I try to face a full day at home and What To Do? Desperately, I ask her - semi-rhetorically - for some artistic ideas. She will come home this weekend (for Father’s Day) and then we can talk.
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Friday, 6/14/02
I did not go to Graduation last evening, a fact about which I am at least partially ashamed. H had helped me lay out my black velvet suit jacket the day before and we had even pre-tied a flowered tie (which used to be one of my favorites.) True - I foresaw the traffic situation around the Conte Forum at BC as a madhouse. But I was determined to go - perhaps mainly to not let Joan down once again (she has gently mentioned various things I might go to, but I’d always declined.) But, when I tried to cath myself near 4:00, nothing came out. And the prospect of at least seven hours of not having peed decided it for me.
The thing is, what can I tell anyone outside our family about why I couldn’t go? The truth is so personal, so delicate, and yet so prosaically banal, that I could not possibly reveal it. I would be forced to offer up much more dramatic, impersonal excuses: ‘I was Too Weak’ seems succinctly serviceable. Better (since more dramatic): ‘I fell - and didn’t have the Lifeline on my wrist.’
One thing that gnaws at me: am I giving in too easily to weakness? Do I use the disorder as an - unnecessary - excuse? I don’t know how to answer this. Certainly I am more concerned about my back than ever: the hopes that the new power chair would relieve it are now dashed, at least temporarily. I have, in other words, few illusions left: I fear the worst (total immobility.) Fearing thus, I am already withdrawing from the world...
Nevertheless, I went to ABP today - the first time in ages. I was welcomed as a long-lost stranger by baker Donny and assistant manager David (who has the most marital problems for someone who is unmarried of anyone I know.) Mainly, I wanted to prove to myself that I could do this. Could I? It depends on the meaning of ‘this’. Certainly, in a literal sense, I went there. But the experience could not be termed pleasant. Mainly, I sat there, my power chair in the ‘down’-position. And, since I have decided not to start a new journal-volume, I read in an older one (volume 81.) But the experience was not pleasant.
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Saturday, 6/15/02
I continue to experience consuming guilt over not having gone to graduation. I could have reinserted the catheter, etc. The fact that I have essentially not participated in the life of the school fills me with a good (or ill) deal of remorse. And it is all mainly in reference to Joan. Of course, it can be argued that all this is an exercise in massive egotism: after all, there are 18 (or so) people in the Math Department, so why would Joan be so concerned about this minuscule 5.5555... per cent? I don’t know; but I wonder how many other members she pointedly mentioned graduation to, asking if they planned to go?
But there is hope with regard to Joan and her feelings about me! She has been gently pressing me to take the computer course this summer. I pointed out that each of the sessions lasts six hours - a (too?) long time for me. (I am worried about going to the bathroom - again, not exactly the sorts of concerns I would be apt to share with someone outside my family.)(I also feel I’d need the manual wheelchair if I’m going to sit there and work at a desk for six hours.) Anyway, last evening at dinner, D suddenly said to me (the idea had never occurred to me), ‘You know, I could go with you to those computer classes and help you out.’ Bingo - there was the solution!
Meanwhile, my dear wife continues to minister to me in every possible way and in excruciating detail - as if my guilty lapses had never occurred. This morning she snuggled naked with me (the one situation in which we are on equal physical terms, & thus of tremendous therapeutic mental value.), Then she gave me a shower, even climbing in herself to wash my hair (and afterwards drying me off carefully & completely & lovingly), & finally cutting my toenails & then dressing me.
Gretchen had arrived last night. Today she appeared, a towhead blond once again. I was lying on my bed, resting my back; she sat in my wheelchair, her legs drawn up (her recommended posture for me, to help said back), and we chatted. I’m afraid I unloaded all my fears & frustrations about doing artistic work; in fact, I’m afraid I characterized me as a failured fool. Gretchen immediately took the offensive, as is her wont: she vehemently protested against me as a failure, terming me witty & talented & beloved & all the rest. She brainstormed the sort of writing I might do now (the notion of a Memoir, jumping between past and present. Nabakov’s ‘Speak Memory’ as the ideal.) (G. is an excellent therapist: she has quick & accurate instincts, immediately can detect & defuse self-pity, and can come up with all sorts of creative alternatives at the drop of a hat.) She also suggested ways to make my back more comfortable, going so far as to roll up a blanket & secure it with rubber bands, to place under my thighs in the wheelchair. (It would be impossible for me to place this under my legs myself - or to remove it.) Later, unlike our wont, we did not go out to a cafe (my terrible inertia); rather, we lunched at the kitchen table & chatted some more.
At dinner we gave G. her birthday presents. There was a frivolous one - a GothicScream flipbook. Then D. brought out the real gift - a lovely wooden table easel complete with a drawer for her paints & brushes. She loved it, of course (I called it ‘the greatest gift since the guitar we gave to Heidi.’) The easel was my idea, but D.& H. purchased it at Playtime.
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