By The Book

68

I had settled into my new daily routine by the third full week of November, Nineteen Eighty-Nine. Each day I'd wake up and shower and pull on fresh clothes. I'd boot up the computer and do a little work on either writing, desktop publishing, online chatter, or computer programming while listening to cable news or music. I'd get up and make my obligatory walk to the 7-Eleven for my soda, otherwise drinking ice tea which I made at home. I'd warm up the stove and make myself a skillet of Hamburger Helper and space out eating it into a few meals over the course of the day, sometimes I'd just boil up some pasta, but I could never make it as flavorful as Hamburger Helper. I'd pick up my mail at the apartment mailbox which, as it turned out, was straight across from my door so I only had to walk ten feet for that one. I'd end up flipping through the prime time shows and picking out my favorites to watch, or go back to cable news and computer work. And then I'd close up my day by watching the Tonight Show with Johnny Carson and sometimes Late Night with David Letterman while sitting on the couch.

Each week this routine was punctuated with a few trips downtown, about two trips to the grocery store, around three times in the bathroom having bowel bouts with me praying to God to 'please let me die', a couple of trips to visit my friend Jeff at his home and watch 'The Other Show' with him, his girlfriend and other friends that might drop by. With some exceptions I was very happy with my life versus how it had been when compared to the previous two years since I was no longer able to work at the big grocery store.

But this week of Thanksgiving was a bit different, my chest started to hurt all around and breathing only made it worse. The lungs themselves didn't seem to hurt from the breathing, it was the expansion of the chest as air came in. Given my lack of health insurance and poor experiences with the community health clinic in town, I just thought I'd wait until the next day for it to go away and continued with my daily routine as best I could. By the second day it occurred to me it might be one of those pinched nerves in the back problems I'd heard about other people having and placed a towel on the tiled portion of my apartment's kitchen floor and lay flat on my back for a few hours listening to the news. But it clearly wasn't helping. By Wednesday I called the community health clinic to see if I could get a short notice appointment but, as it was the day before Thanksgiving they were closing early and had no slots available. She said they did have a special arrangement with another hospital's emergency room if I felt I needed to go there; with their permission the visit would be covered with their low income sliding scale. I debated that option but decided to make an appointment with the clinic for the following week, instead.

By the afternoon of Thanksgiving day, though, the pain was much worse and I was down to just taking little panting breathes so my breathing wouldn't peak the pain level into the profound range. I called up the clinic's answering service to get their permission to go the emergency room. I was told I had to talk to one of the clinic's staff to be evaluated before permission could be given, she took my name and phone number and the call was ended. I sat there crouched over as that staff member was contacted at home and called me back. As bad luck would have it, it was Michael the nurse practitioner and he was already yelling at me over the phone when I answered, then finally asked me what my symptoms were. I told him that ''I have severe chest pain that gets worse when I breathe in, but my lungs aren't congested.''

''WHAT BOOK ARE YOU READING THAT FROM!'' he barked back at me.

I took a moment, stunned, before I replied that I wasn't reading any book.

''I CAN TELL YOU ARE, YOU AREN'T SMART ENOUGH TO KNOW WHAT WORDS LIKE THAT MEAN!'' I thought over the words I had said to him trying to fathom what it was that had offended him. Chest? Lungs? Congested was the longest word but it was commonly used in television commercials to sell cold products so I couldn't believe it was that. He continued, ''YOU'RE JUST MAKING THIS UP BECAUSE YOU'RE LONELY ON THANKSGIVING DAY! WELL GET OVER IT AND DON'T WASTE MY TIME!''

''So I won't get permission to visit the emergency room?'' it dawned on me.

''OF COURSE NOT, YOU WILL NEVER GET IT!'' he snapped and hung up the phone.

I spent another twenty minutes at the apartment wondering what I should do but as the pain wasn't letting up, I decided to call Suzi, the lady who hosted the writers' group at her home, and ask if she or her husband could pick me up and drive me to the emergency room. I could have called Daina, but as she was at the south end of town, it didn't make sense to have her drive north to get me, then back south to this other emergency room. Thankfully, Suzi did pick me up and take me there. She asked if she should wait but given that I didn't know how long I'd be there I thanked her and said I'd find another way home once I was done.

Checking into the emergency room took a bit of time and I noted I was a patient with the community health clinic as I didn't have insurance. I was taken to an exam room where I could lie down on a table and the emergency room doctor examined me and listened to my lungs, blood work was taken and when it came back he concluded that I had a viral chest infection and sent the nurse down to the pharmacy to get a heavy duty pain pill. When she returned and I took it, it was another hour before it kicked in and started to melt the pain away. The emergency room doctor returned less than an hour after that to confirm that I was now able to take full breathes without pain and then ordered a full bottle of the pain pills for me to take home and continue using, as through the hospital it would be covered by the community health clinic rather than me buying them at a local pharmacy, if any were even open on the holiday. It turned out, as a viral infection, my original plan of just waiting it out was the best one so the pills were just to reduce the pain until the infection took its course and my immune system cleared it out.

Discharge papers in hand as well as the bottle of pills, it was now a question of how to get back home. Being late at night, I called Jeff as he was always up at this time of day and asked if he could give me a ride back to my apartment. He could and when he arrived he told me this other hospital was the one he had been born in. He asked what had brought me here and I told him of the chest infection but not of the phone call. He dropped me off and I was able to crawl into bed and have a comfortable night's sleep for the first time in days.

When I arrived to the clinic for my appointment the following week, it effectively became a follow-up to my E.R. visit. I had been assigned to a new doctor, 'Betsey', and we talked about my symptoms leading up to the E.R. visit and how the pain pills had been helping since. She would become my new primary doctor and given how well this appointment went, I planned to return and see if I could get her to look into my weight loss issues...

A few months later, after receiving no bill, I called up the emergency room to discover that my visit had been covered by the community health clinic's partnership with them and I didn't have to worry about a bill. I guess once they reviewed the blood work and the E.R. doctor's findings it was concluded I would get approval for the visit after the fact.

Given how well my first visit with Michael had started earlier in the year, I was broken hearted with how our last interaction had gone. I only hope it has equally haunted him in the years since, but I doubt it...

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Creative Pursuits

67

With all of my health related attempts put to bed for the year, I spent the rest of Nineteen Eighty-Nine rebuilding my creative side and working for the clubs. But this was complicated by my stroke earlier in the year.

The several comic strips I had written immediately after the stroke, which turned out to be pages of gibberish that I believed to be hilarity at the time, were the first thing I tried to sort out. After a few hours I finally unknotted the assorted words into meaningful strip scripts. While slightly amusing I couldn't imagine how I had ever thought they were so funny at the time I had written them. Still, another artist had expressed interest in drawing something for The Doctor Who Report and I passed the corrected versions of the strip scripts for him to draw, if he wished. After being embarrassed by handing the original gibberish versions to the first artist to join the newsletter, I couldn't bring myself to ever again talk to him about them. As I didn't think these strips were up to my original quality of writing, I published them under a different name once done. Still they helped to fill space in TDWR.

Also helping to fill space was the fact that I had finished three Doctor Who stories before the stroke, allowing me to avoid writing anything significant for the year as I sorted out my long term reaction to the resulting agraphia which caused my writing to now be such a jumbled mess. Serializing those stories would last until halfway through the next year of the newsletters; though I had originally not intended to publish one of them in the newsletter, it was good enough to go ahead and use.

So my only writing for the year was for the comic serial needed for the original artist of the report. After turning in a script that he was thrilled with before the stroke, after the stroke I had lost my train of thought for the following installment and instead just made it a slapstick comedy attempt as I needed to cheer myself up. He was disappointed with the abrupt change of style. Fortunately, I eventually eased back into my original writing style for the next installments and then he had taken on the responsibility of coming up with the next two installment stories which reduced the burden on me.

At first, no one at the writers' group noticed that I had abruptly stopped offering work to be reviewed and I instead concentrated on being a good reviewer for other people's stories. This worked out well and people seemed to appreciate my input.

Of a batch of over one hundred query letters I had sent to agents trying to interest one of them to represent me and my speculative script for 'The Other Show', only one of them wrote back saying they would. Another work I had written before the stroke, I sent it off to her and never heard back. When I wrote her about it months later asking what had happened, she sent back a strange letter that left me wondering how much of a professional agent she was. And sure enough she was apparently out of business soon after, leaving me to once again go agent hunting if I ever came up with another script idea and became comfortable enough to try to write it.

Suzi, the lady who hosted the writer's group at her house, had liked the look of my desktop published zines & monthlies and asked if I could teach her how to do it. I agreed to if, in return, she took over assembling the monthly newsletter for the science fiction club. I would still provide the editorial page and upcoming meeting information and Daina with others would still provide the reviews. She agreed and I put together the next two issues at her home using her computer as she watched and took notes, then she took over from there only contacting me for the occasional obscure question about using the software to get a desired result.

While my writing skills were challenged, my visual skills weren't and the artist of TDWR, who was also in a local punk band, asked if I would assemble and create the cover for their first album. I agreed and they supplied the front cover artwork they wanted and the information they wished the insert to contain and I was off making them a few suggested cover layouts and they picked a hybrid and it was done. Now I could add the role title of 'album cover publisher' to my quiver of nonpaying 'jobs'.

Where Daina had originally come over to my mother's mobile home when she would be at work on a weekend to discuss and layout the science fiction club's Quarterlies, now with my own apartment she could come by after she was done with her day of teaching and we'd started to visit and talk about other things as well. As always, I shied away from talking about the ordeals I had been going through and just kept it to light topics and she mostly talked about her school days and some troublesome students. She again asked me if I'd like to go out to dinner and I again passed, noting that I was waiting for the next club's post meeting dinner.

Finally to fill my time in my apartment, I returned to coding big time. An interactive compiler for the 'C' programming language came out and it mightily sped up the whole writing, testing, and polishing process of the coding cycle. I created a comprehensive check book program for myself which some friends saw and asked for copies and soon gave me ideas to improve it to track tax deductible items. I also created a set of hard drive file reviewing, modifying, and deleting programs which Jeff added to his online site as shareware, effectively free software and if the user liked it enough they could mail you a check for a suggested amount... I never did get a check.

All and all I had settled into my new apartment life pretty well and I was thankful every month for my disability check and the ability it gave me to not have to remain squatting in my mother's mobile home against her wishes, or otherwise face homelessness. The one thing I did miss, though, was the hope of addressing my health issues successfully, once again. But as the health coverage for Social Security Disability would start early into the next year, I was longing to have yet another crack at it.

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Burning Money

66

There were rules for my lump sum disability back payment when I got it and one of them was I couldn't hold onto it as personal savings otherwise it would show me as having too much money to qualify for benefits. But as this was a known issue, they had worked out a grace period that one could have that cash on hand before they would count it against you. Thus of my over four thousand dollar amount, I needed to burn up all but a few hundred dollars of it before the end of Summer.

Of the things I used the money for was new clothes. I had actually been living in the original clothes my parents had bought me during High School and not only had they worn out in the intervening years, they were a few sizes to big for me given my emaciated state. And so I was off shopping!

One department store had not only come out with a new line of neon bright and cheerful tee shirts, they were also offering chances to sign up for their credit card. Given how my lack of a credit history had interfered with my getting an apartment, I readily accepted and bought much of the line of tees as well as several new pairs of jeans. Given my awkward puberty, I was sticking with the jeans & tees style as it was pretty much the only style common between men & women in America. This allowed me to dress and not feel like I was presenting myself as something I wasn't.

Gone too, was the ACE bandage I had worn to strap down my breasts since the age of thirteen. Given my extreme weight loss my breasts had also withered, leaving me with just protruding nipples. In the year and a half I had lived solely in my mother's mobile home without any job, I had gotten use to no longer wrapping myself up each day. With my technique of rolling my shoulders forward to cause my tee shirts to drape like a curtain, that alone would be good enough to keep my nipples hidden in public. I retained the best of my old clothes for house work type chores, but on the whole I was publicly in my new clothes the moment I got them.

I debated about replacing the winter coat I had held for over five years, but I decided to wait a bit longer until I found one that really caught my eye. While I did have light jackets for Fall and Spring in New England, since moving to Colorado I had just gone between no coat or winter coat with nothing in between. That was to change as with Fall my not as older brother, stationed in Europe for the Air Force, bought me a grey leather jacket and sent it to me. I don't know if it was another example of mother drumming up gifts for me from other people to reward me for moving into my own apartment, or if my brother had coincidentally bought the jacket for me that year. Either way I quickly fell in love with it and it's unique, for America, styling. It became my Fall/Spring coat.

One thing that ate a sizable hole in my remaining lump sum amount was an upgrade to my computer and an associated piece of software. The software was a typeface foundry which would allow users to create and/or modify type styles and fonts for Microsoft Windows to use, and thus have as new options when creating documents for desktop publishing software. It made great sense on paper given the amount of desktop publishing work I had fallen into doing. As typefaces were highly dependent on curves, the program did a lot of math and as IBM PC clones had no built in chip for that, the program would crank away for hours as I tried to work on a single letter. To compensate for this I also bought the 'math coprocessor' upgrade for the computer and once that was installed it changed these hours into several minutes per letter instead. Ultimately while I had great plans of creating original fonts and even hand importing existing ones from printed source material, I ultimately did little more than tweak an existing font or two. The only thing of value I got out of this upgrade was a higher resolution monitor which was a huge help on all the subsequent publishing work I did. But that was only a little over one hundred dollars, whereas the typeface foundry and math coprocessor ate up short of nine hundred. I could have gotten a vastly bigger hard drive for the computer and other more useful tweaks for that kind of money.

Oh well, live and learn.

Another, much smaller, purchase I made was to buy myself a small synthesizer keyboard. All my life I've had original music flowing through my head but no way to express it other than humming. Oddly enough, even though I was a writer, it was the tunes themselves that flowed in my head, not any words. I had originally dabbled with a next door neighbor's organ as a child and my hope was I would be able to come up to speed on the keyboard and start making the music in my head come to life. But first I'd have to learn how to play it and that I'd do in dribs and drabs over the coming years.

By the time Fall came I had successfully burnt through the lump sum amount, with the final portion used to bridge the gap in the money needed to order the Doctor Who radio play ''Slipback'' from Britain so it could be played on our local public radio station as part of The Doctor Who Report's activities in town. Having traded letters with the production office a few times in the past, I only had to learn how to have an international money order made up for the purchase. Once that was done, I dropped the check and order form into the post knowing we'd soon have new Doctor Who to listen to and hopefully raise the club's profile that much higher!

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Errors

65

Shouldn't have done that.

One of the first things I did with my lump sum check was write a letter to the State requesting a copy of my State Aid hearing tape from the previous year. Had Legal Aid appealed the decision, they would have made such a request but, as they hadn't, I could make the request myself if I was willing to pay the fee. At the time I couldn't afford the fee, but now with the lump sum, I could easily afford it. I wanted the copy simply for my records, as another objective marker of the strange events of my medical care via what the woman doctor had said. After a couple of weeks, I called the state about it and they confirmed having received my request and that they were hunting up the tape and I should have it soon.

After I moved into my first apartment I happened to fold my arms and grasp my upper arm area with my hands. To my surprise, I realized that my thumb and index finger could wrap around my bicep and touch at the finger tips. I now had a different way of gauging how much weight I had lost. After another horrifically painful experience in the bathroom, I decided to look into visiting the community health clinic and once again see if I could get medical care for my weight loss and intestinal issues. I gave them a call and, as they'd have to financially qualify me for service, they told me what documentation to bring in with me. Once they confirmed I could receive service, I would be wait-listed for that day.

The clinic was in an old business building on a forgotten stretch of the main road and not directly next to a bus route. Looking the routes over carefully, I found one that had a stop about four blocks away and I was on one bus to transfer to another until I finally arrived and made the walk to their door. Qualifying was pretty easy and then I was in a waiting area chair. After a bit over an hour I was called and taken in back where, by chance, I was assigned to a male Vietnam Veteran Nurse Practitioner, 'Michael'. He was great and I told him of my weight loss issues and bowel issues and existing diagnoses of fructose intolerance and fat malabsorption problems and various allergies. He was friendly and said, ''What we need to do is slow down how quickly things are moving through your system.''

He gave me some free packets of food additive that was to do this and then asked me if there was any other treatment I had over the past few years that made my condition better. Thinking it over, I remembered the joint doctor who thought I had Lyme Disease. He put me on antibiotics but when he found out I didn't have it after all, he terminated the treatment before it was done. I had felt better at first, but then I quickly returned to my condition a week or so after the antibiotics had been terminated. ''How about a shot of penicillin?'' he asked. I wasn't sure what he meant and he asked more directly if I was allergic to penicillin as he was willing to see if it would help my health issues. I told him I wasn't allergic and he left the room for a bit, and then returned with a syringe to give me a long acting inter-muscular injection. Done, I was on my way out to the side desk to make my follow-up appointment.

I was thrilled by the polite and friendly response I had gotten and began to think that what I had needed to do all along was to see nurse practitioners rather than doctors to be treated professionally and with care. While setting the follow-up date, I began to feel a little weak and shaky. Once the appointment had been set, it was the perfect time to make the walk to the bus stop a few blocks away, but I was feeling even worse and didn't think I'd make it and instead went back to the waiting area and took a seat. A few minutes later I was having shakes and troubles holding myself up in a sitting position and went to the front desk to ask if they had somewhere I could lie down for a bit. One look at me and suddenly many medical staff members were called to help lead me to an exam room with a short bench where they lay me down.

As they scrambled they asked me if I'd eaten something that had made me sick, I told them I hadn't. Michael came in and told them he had given me a shot of penicillin and there was a debate if I was having an allergic reaction. One nurse was sent out to get me something to eat and brought back some orange juice, I noted the fructose intolerance and she ran off to get something else. The lead doctor of the clinic came in and lifted up my legs so I was lying in a sitting position as the nurse came back, this time with peanut butter crackers, I had to tell her I was allergic to peanuts. There was a quick discussion and she was off again. The main doctor let go of my legs and they slowly settled down and he became angry as hell and demanded I let my legs fall. As he again grasped them, still yelling at me I finally caught on that he wanted me to actively push down against his arms. Given my weakened state that was a challenge but I did my best, pushing my legs down on his arms until I felt my lower back slightly lift off from the table. The nurse came back with some corn chips for me to eat where I had to tell her I was allergic to corn as well. I asked for water, instead, but they wouldn't bring that feeling I needed to eat something more substantial. The main doctor asked if I could eat cheese and I said yes and he directed the nurse to get a piece of cheese from the lounge refrigerator. Once my heart rate and blood pressure were checked, they felt confident it wasn't an allergic reaction to the penicillin. The main doctor let go of my legs to fall off the end of the short table and he left, Michael was showing signs of anger and left soon after followed by the other medical personnel. I lay there for a bit alone until the nurse came back with the cheese and a small cup of water for me. Then she left me as well as I finished and then lay on the table a bit longer before sitting up.

There was no one left in the room to ask if I could go, and the door had been left open, so once I felt good enough I just left the clinic and made my way to the bus stop and took the bus back home.

To my shock, some of the first mail I got forwarded to my new address was a collections notice. It was for the two emergency room visits I had made earlier in the year which had been paid for with my brief Medicaid coverage. Unlike when they returned my old primary doctor's false collection request, when I went to the collections agency to tell them the hospital bills had been paid, they weren't interested. As this was the hospital that had filed the collections request, it was deemed to be unquestionably accurate and all I could do was pay up or go to the hospital and have them withdraw the filing. Thus I went to the hospital about it, bringing my paperwork, and they told me that someone in their billing office must have 'fat fingered' in the wrong code, marking the billing dates as 'default' rather than 'paid'. Once it was corrected in their computer, it took another month for the collections agency to confirm it had been withdrawn and I had no outstanding issues left.

After a month since my last call to them, I called the State office again asking about the tape and when I'd get my copy. They confirmed that the tape was in the judge's office and once he was done reviewing it, I would get the copy. A few weeks later I received a letter stating that the tape had been erased and under Colorado law they were allowed to erase tapes after a little over a year's time so they could be reused for other hearings. When I called up the State office about it, they confirmed that the judge himself had erased the tape and it was legal under the law and there was no recourse or back-up copy. I was livid! Apparently once the judge reheard the tape himself he felt he couldn't let a copy get out and reveal how the hearing had actually gone.

The packets of powder the clinic had given me 'to slow things down' made my bathroom bouts more frequent and much worse. Wondering why, when I read the ingredients I discovered they were mostly corn starch, so I stopped taking them. When I returned to the clinic to see Michael to follow-up on the results, he was hateful and glaring as I told him the packets of powder had made things worse so I had stopped taking them and handed the unused ones back to him. Then I noted that the antibiotics shot had made no difference. He barked at me that he wasn't surprised as he had since found out that I was a faker who was faking all of my health problems. Dumbfounded by this I asked him what he was talking about and he returned, ''You know what I'm talking about!''

A lesson I've learned in life: When someone acts like they know something about you, you ask them what it is and they refuse to say, that's because they don't know themselves. They claim that 'you know' what they are talking about in the hopes that you will fill in the blank for them. So whenever someone acts like they know something about you, but won't say what it is, that's because they have no frigging clue.

At least I can say Michael didn't flee the room after dumping this crap on me. He told me our appointment was done and I was to leave. I felt like I should argue, but given his mood and my not knowing what he was talking about anyhow, I just left. My hopes that the community health clinic would be a new chance to have my health issues addressed fizzled and I was again left to wait until things took their natural course. I honestly didn't believe I was going to be around for many more years.

Reflecting on the whole experience and what I could have done so as not to have angered Michael, all I could figure was I shouldn't have gone to the desk and asked if they had some place I could lie down when I felt shaky after the shot. I should have left the building and then laid down on the ground out of sight until I felt strong enough to make it to the bus stop on my own. That was the only thing I could imagine doing differently...

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