Grounded In Reality

77

'Jude's office was at the back of a large nineteenth century mansion which had been subdivided into professional offices of all sorts in the twentieth century. Given the size and number of professionals there, they had a receptionist who greeted me as I came in and asked who I was there to see. She then asked me to take a seat in the living room turned waiting room and called Jude's extension. For the first visit, he actually came to greet me at the waiting room as the trip to his office was through a bit of a maze of odd hallways on the second floor. Once there he let me pick from a variety of seats and then settled down in one across from me. There was some initial paperwork for me to fill out, mostly contact information and insurance numbers, and he spent the moment starting his own file on me. Once all the obligatory bits were done, he wanted to confirm who I was, it turned out he already knew of me but just wanted to make sure I was the same person.

He told me right up front that he had heard about me through the medical grape vine and had in part accepted me as a potential patient on the basis that he was curious about what he had heard. He also knew my mother's primary care physician who had first treated me and wanted me to know that, as well. Would that be a problem? If asked even six months earlier, I would have said ''Yes'' and left to find another counselor. But given that I had already called everyone else, I decided to give him a chance as long as he agreed that our sessions would be confidential and he wouldn't be reporting them to the 'grapevine'. He assured me they would be private... Given my past experiences that didn't mean much, but as I said, I had already called everybody else.

He then let me know he was a 'psychiatrist', not a 'psychologist' and asked me if I knew the difference. I told him I didn't and he explained that 'psychologists' study the mind and try to help primarily with talk therapy, while 'psychiatrist' are trained medical doctors who subsequently specialized in psychological issues and treatments. As such, he could write prescriptions and order medical tests, whereas psychologists couldn't. Given what he had heard about me on the grapevine one of the things he'd like to do is order some tests for me once we established a rapport. I agreed and my hopes even raised a bit as I started to wonder if these tests would include looking into my weight loss and bathroom bout issues, though I didn't express that hope to him. Instead waiting for that 'rapport' stage to develop.

So, in my own words, he wanted to know why I was seeking help from him. I told him of my many issues getting my health concerns addressed by doctors, how they didn't take me seriously or worse made-up stories about me to explain why I shouldn't be taken seriously. I even mentioned the bizarre time when the Premier Medical Center's gastroenterologist had refused to treat me for my fat malabsorption problem that he himself had diagnosed until I ''tested positive for AIDS.'' Then I further went to mention how my mother's primary doctor had been ordering test for me, then discarding the actual test results to instead imagine the results he had wanted and put them into narrative notes in his and the hospital's records. As our time was coming to a close, Jude felt he had a handle on what my issues were and as I'd told him of my medical records copies, he asked if I could bring them in for him to review at our next appointment. I agreed and a follow-up was schedule in two weeks.

For the second appointment I was to check in with the receptionist and then make my own way to Jude's office. There was a chair at the end of the hallway if needed for waiting patients, but as I arrived, his door was open to let me know I could come straight in. He told me he had a surprise for me later in the session but first wanted to start by looking over the medical records, comparing the actual test result pages with the doctor's narrative notes. He told me that what was likely happening was that I was getting confused by how the results in the narrative notes were being recorded and he'd be able to show me how. But after reviewing the doctor's notes versus the various test results he, himself, was at a loss as to what my mother's primary doctor had been thinking.

Unable to explain the factual gaps between the records, he decided to put it aside and then told me he had gotten the direct phone number to Premier Medical Center's gastroenterology wing and had asked to make a call to my original doctor there during our appointment time. In this way I would be able to see that my suspicions of being bad mouthed behind my back were unfounded and that I had imagined that to explain my issue of not accepting medical doctors' advice. He made the call using his speaker phone and asked me to be quiet as he wasn't going to tell the doctor I was listening in, thus ensuring a candid conversation. The call connected and he talked with the hospital wing's nurse who put him on hold while we waited for the gastroenterologist to pick up the line after his current patient was done. When he did, Jude introduced himself and noted that he was starting to see me and wanted to find out about my medical history with him.

The doctor responded by making several personal disparaging remarks including that I was a 'faker' of health issues who couldn't be trusted given my ''history of self mutilation.'' Jude was stunned and glanced at me after hearing that bit and I just shrugged my shoulders and Jude responded by asking ''What history of self mutilation?'' The doctor didn't know of any details, he had just 'heard about it,' but clearly, in his mind, anyone with double pierced ears was into self mutilation. Jude bit back that he didn't think that was the case, and regardless a patient's medical concerns should be addressed professionally even if they did have self mutilation issues. The doctor disagreed laughing back that if there was any suspicion of mental health issues then it was a waste of time to look into any medical concerns as there was no way the patient's word could be trusted for diagnostic purposes. Jude strongly disagreed, the doctor returned that clearly Jude didn't have that much experience if that was what he thought. The call was ended with Jude asking the doctor to reconsider and the doctor noting he had 'legitimate' patients waiting.

Jude was shaken, he eyes betraying a touch of fear. ''Have you ever had a history of self mutilation?'' he asked, hoping to find some kernel of truth to comfort him after this call. I told him I didn't and even offered to let him look over my body for any such scars if he wanted. He didn't feel he needed to.

While the call had been meant to show me how my suspicions were unfounded, it was Jude's own belief in the professionalism of the medical community that was shaken.

I had found myself an ally.

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The Dimming Light

76

I don't now if it was the final result of the cumulative years' worth of emaciation, or perhaps an unrecognized side effect of taking the fat enzymes, but by the Summer of Nineteen Ninety, my brain was just not working any more.

I could still muddle out my stories needed for The Doctor Who Report as well as my editorial bit for the science fiction club's monthly two sheet, but the results were less compelling and more lack luster. While I had been writing code consistently since the age of fourteen, I found it had recently become confusing for me and hard to untangle and I soon gave up trying. I even reached the point where one day I realized I couldn't remember what my last name was anymore and actually had to pull out my Colorado State I.D. to remind myself.

Physically I was doing a bit better, though. I don't know if it was the fat enzymes helping me to absorb calories or the frequent free dinners Daina was taking me to at restaurants, but I had actually gained a little weight during the first half of the year, bringing me to only be thirty three pounds underweight. Where the previous year I had discovered I could wrap my thumb and index finger around my upper arm and have the finger tips touch, I now had to use my slightly longer middle finger to reach my thumb on the other side, meaning my upper arm had increased in circumference by nearly a quarter inch!

While getting the fat enzymes was the first step I had gotten out of a doctor to treat my weight loss problems, ultimately the full issue was still not being addressed by my assigned doctor, Betsey, at the community health clinic. And my attempts to find a counselor to help me understand why this may be and how to correct it, getting doctors to serious look into my persistent health problems, had come to nothing as well. I saw this dimming of my brain as a sign that I was down to my last year or two before my life finally expired.

I reflected that I at least wouldn't have to worry about addressing my intersexed 'situation' given my presumed remaining lifespan.

Though I had gained those few pounds, I now had the persistent burning line of pain going down the back of my left leg, more of my hair had fallen out, leaving me with a tuft of hair in the center of an otherwise balding skull. I couldn't stay awake for more than eight hours at a time, having to sleep before the next eight hours. After a few weeks of this my metabolism embraced the eight hours up, four hours down, eight hours up, four hours down daily schedule. In one way this made me feel like I was living twice as many days as compared to other people. But in reality I hadn't been living a full life in years.

Never having suffered from nightmares my entire life, I started to have little 'night frights' where I would doze off and have a brief impression of my dead body being eaten by little bugs: Sometimes spiders, sometimes ants. I would wake up with a start to realize it had only been a brief, if unwelcomed dreamlet.

During my first year at the apartment I had problems where my belly would sometimes swell out like a taut balloon and all I could do was unbutton my pants and unzip my zipper to allow me the most comfort at these moments while I hid in my apartment until the swelling was over. Based on T.V. ads I concluded it might be intestinal gas problems and went to the local pharmacy to look through their gas treatment options. I finally found one brand that didn't have any additives that I was allergic to and bought a box. While it helped on these occasions, given how expensive it was compared to my budget, I rationed these to the times when I had to have the swelling down so I could go to an appointment or when the swelling was particularly painful.

During the year I also had bouts of shivering during the Spring, Summer and Fall. Once I found out about my body temperature readings I wasn't surprised, but all I could do was wear my winter jacket inside the apartment to help me warm up, sometimes even taking the comforter off of my bed to wrap myself in and make a can of hot soup. During the Winter, oddly enough, this wasn't an issue in the apartment as I could open the heating valve more and bring the temperature in my apartment into the eighties if I needed to. The only issue, then, was if I was waiting for the bus outside in the cold and began shivering uncontrollably. All I could hope for in that case was that the bulky coat would help to hide this from the bus driver and other passengers once they arrived.

Then one day, after another profoundly painful bathroom bout and all of my attempts to find a counselor had failed, I saw no future for myself. I decided to stop drinking anything for half a day to make sure my bladder would stay empty by the next morning and went to bed with the express goal of committing suicide by just waiting to expire while lying in bed...

But a day and half later I was bored of just lying there and got up to check my eMail and play a game on the computer, falling back into the drinking and eating routine while I was at it.

As I had been going through the phone book's yellow pages in search of a counselor, I had crossed out the names of those who had turned me down or didn't work out and decided that I could always call back the ones who had never returned my initial phone call to them. But this just resulted in a second occasion for them not to return my phone call. Then a few weeks later, a psychiatrist I'll name 'Jude' called me and apologized for not getting back to me sooner as he had been on vacation.

Would I like to come in next week?

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In Tight Places

75

After two full and successful years running the local science fiction club, Daina and I decided to do something big and thought to host a Science Fiction & Fantasy art auction. Consulting with our only remaining co-founder of the group, Elizabeth, she explained the process to us: We would write invite letters to various artists informing them of the auction and those who were interested would send us a selection of their artwork at their own expense and supply a check for the return postage as well. We would display the artwork at the auction, preferably having some awards where a guest author could be the judge. All proceeds for art sold were split with the club keeping a slice and the rest, along with any award money, being sent back to the artists with their remaining artwork.

This was perfect as there were no up front costs to the club and Elizabeth knew someone who already had temporary pegboard walling that we could use to display the artwork. Daina composed the invite letters and I mailed them off and we waited to see what would show up for the auction. We contacted one of our favorite guest authors to be our host and then figured out what awards we were going to have.

In the meantime, given the club's growing stature and positive word of mouth from our guest authors, Daina was finally able to land a coup. One of her all time favorite authors, Sheri S. Tepper, had finally responded back to her author reading invite letters and had expressed an interest. There was only one small catch, she wanted to talk to 'the one in charge' and gauge her comfort level before committing. I agreed and my phone number was sent off for her to call when convenient. When she called I was still in bed, though had been awake for a while so when I answered the phone in my bedroom I didn't embarrass myself with sleepy mumble talk. We had a good getting to know each other chat and she decided she would definitely come and wanted to know what dates were available. Before the age of common cordless phones, I put down the phone handset in the bedroom and went to my calendar in the computer section of the apartment. I picked up the phone there and told her of the dates and she picked one and it was set. The call concluded, I hung up the handset by the computer and went to the bathroom for my morning pee. Once done I left the bathroom to realize the bedroom phone was still off the hook... and I hoped against hope she had quickly hung-up and not heard me do my business!

Bit by bit, boxes of artwork were arriving and collecting in my apartment, with each new one Daina and I opened it to discover what new pieces had arrived. All were varied in style & medium and we thought we were going to have a great selection, although a bit smaller in quantity than we had originally assumed.

The Friday before Sheri's arrival was my day to take the bus to the Savings & Loan bank to pick up the key to the basement meeting room. When I arrived, they told me this was our last time as the bank was going out of business. Was somebody else taking them over who I could get the room from in the future? They didn't think so. This was a problem as we had intended to have the art auction there the next month and now I was finding out we had no location to have it in. Further, this had been the place the club had been meeting at for over half a decade and all the members knew it, now I would have to scramble to find a new location and then hope people could find it. I put all this worry aside, though, and concentrated on our next meeting, the following night.

I would take the last bus of the day to the Saving & Loan location on Saturday and then, after the post meeting dinner, get a ride home with one of the members. This had usually become Daina since we had built-up a close friendship over the past few months. The problem was the last Saturday bus to that end of town arrived forty-five minutes before the meeting and so I was there in plenty of time to open up the meeting room and set-up the flyers' table, the guest table, and the chairs and dividers, but then I had thirty more minutes to myself until the first club members arrived.

This time, though, Sheri was early as she wasn't sure what the driving time would be and we had a half hour to chat. Based on Sheri's books, Daina had theorized and told me that she must be a young Emily Dickenson style recluse who toiled endlessly on her books alone in a little, darkened apartment somewhere. But it turned out that Sheri was more of a ranching grandmother who had embraced writing once her children had grown. I also noted that I had a history of people coming up with fun assumptions about me that also didn't pan out. I admitted I hadn't read any of her work myself but that several of the club members were huge fans and were thrilled that she had come for the night. Then a few minutes before the start of the meeting, the club members began to drift in and I excused myself to go and greet them and have them settle. After a few minutes more to wait for any stragglers, I introduced Sheri who had already been seated at the table and the meeting commenced.

When having guest authors the most common routine was for them to read a selection from a work of theirs, typically the newest book, and then spend the rest of the time fielding questions from the audience. But a few times the author had a different idea and Sheri wanted to talk about how she was inspired by her story ideas and how she liked to show the impact of them on people. Then for the next twenty or so minutes she used me as her unwitting foil: I don't know if I had said something before the meeting to irritate her and she had decided to 'put me in my place', or if she had always intended to pick someone as a stand-in and I just happened to be the first one that came to mind. But she went through a series of example societal questions and assigned me with the undesired opinion that she could then contrast against to explain her own thoughts of the matter. They were like: As I thought women should be anchored by a physical chain of less than thirty feet in length to the kitchen and only have a mat on the floor to sleep on, she felt that things should be different. The only example I still remember the exact details of was: As I thought prisoners on death row should be gassed to death on a random day while the prisoner was sleeping in their cell, she felt... At first I felt the need to defend myself and say these examples of 'what I believe' really weren't what I believed, but soon I realized that she was just using me as a convenience and not intentionally trying to mislead people about my beliefs. I just calmed down and accepted it with a huge smile... or was it a grimace?

After that period of being her foil, she opened things up to questions and then I think she finished with a short reading. The meeting was done and I thanked her, the audience clapped and some moved up to the table to ask for signings while the rest of us touched base on who would be making it to the after meeting dinner. Sheri was invited to join us, and sometimes authors did, but as she had a long drive home she bid farewell and the meeting broke up. All and all it was a great time and Sheri was the talk of the table as we ate.

At the start of the next week I only had a few days to live on the phone and try to find a new meeting place for the Art Auction before I'd have to send out the monthly newsletter that would be my only chance to notify club members of the new address for the day to come. As the original meeting room had been at a bank, I called all the banks in the phone book but none of them offered a meeting room any more. One of them explained to me that they had once gotten tax credits for having such 'community rooms' but once the tax credit had been phased out, the banks had discontinued offering the rooms over time. I was stumped and had to find somewhere fast!

I remembered the club house at my mother's mobile home park and it was a nice place and so I took the bus there and walked into the office and said ''Hi.'' They remembered me from a few years earlier when I had used the club house to tape a radio drama and they apparently weren't aware I had since moved out of the park, just as I'd hoped. I asked if I could reserve the club house in a few weeks for an art auction? As nothing else was scheduled for that day they said I could. The monthly newsletter was finished with the details & a quick map and then for those artists who said they would come in person to set-up their artwork, I quickly mailed them letters of the last minute change of address as well.

Finally the day came and I believe I roped in Jeff and his truck to help me get the pegboard and stand supplies to the club house and started to set it up with the help of Daina. Daina's car was used to get the artwork from my apartment to the club house in a few runs while I worked the pegboard. Typically it would be set up as flat panels against the walls of a room, but given that we didn't have enough artwork to fill up that much display space, I instead decided to assemble the peg board away from the walls as a zig-zaggy pattern making many little corners where an artist's work could be displayed. As I was working, one of the artist who came to feature her own work brought her husband and once he saw how I was setting up the pegboard, he immediately accosted me and told me I was doing it all wrong. I assured him that I had a plan in mind but he assured me I didn't have a clue and would have to take everything apart and do it right. I declined and that seemed to surprise him, that I was not taking his unquestionable advice, and then left in a huff already declaring the auction a disaster.

The pegboard assembly finished, Daina and I then debated about whose artwork would hang in which fold. For the artists there in person to hang their own work, we gave them first choice. For the center of the display area we moved a few tables from the dining room of the club house into place at the center to display physical pieces of artwork which couldn't be hanged. Once all was sorted through and hung up, all the exposed peg board was evenly filled and made a fine display. I wish someone had taken a picture of it for me. The artist's husband came back to me and apologized for not trusting my judgment and told me he thought the resulting display looked great.

One of the first lessons I learned when hosting club meetings was the problem with empty space. It was always better to have a confined space with twenty people packed into it than a large space for fifty people with only the same twenty people. The closer things were, the better the energy level. In the case of the meeting room, it had some mobile diving walls I could use and would set up the table and twenty chairs closely together, placing the dividing walls just after the chairs to give an impression of a smaller room. When more people came than expected, I'd move the dividing walls back a bit and add another row of chairs, sometimes two. For the auction, by using the zig-zaggy pattern for the pegboard setup, I was able to have it significantly away from the walls and hide a third of the room's space without it being apparent. The result was a cozy space that was filled ensuring a better energy level as people milled in and out.

The auction went pretty well, about a quarter of the items sold, our guest author Ed Bryant was a great Master of Ceremonies and the awards given out for various reasons met with the approval of the attending members. While I couldn't afford to buy anything for myself, one of the pieces of art wasn't Science Fiction or Fantasy themed at all, just a simple painting of two brown bunnies under a bush. Its color combinations matched the choices my mother had made for her mobile home and so I decided to buy it for her and took it to her that night as the auction was winding down. She was taken aback as it was probably the first gift I had bought her in many-many years. But I was so thrilled with how the auction had gone I wanted to spread that feeling around and was glad I could bring a piece of it to her.

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On The Record, Part Two

74

Given that I wasn't getting anywhere gaining insight as to why I couldn't get taken seriously for my weight loss issues and bathroom bouts by medical doctors, and the student psychologist wasn't helping me with it, I decided to go to the community health clinic and request a copy of my records. I hoped that by going through the notes, I would find clues as to what made my health issues something to ignore. Making the request in person I was told it would take a bit and I spent about an hour roaming the large clinic building and even walking the grounds. Finally the copy was done and I picked it up and went home on the bus. Once there, I looked over the notes and found nothing unusual or informative except for my body temperature. With each appointment at the clinic they would take my temperature and blood pressure and note it in my records, I had never thought to ask what the readings were. Now I was looking at them in the notes to discover that my body was usually ninety-four degrees Fahrenheit with one time being recorded as ninety-two degrees. That seemed surprisingly low but the doctor had never mentioned it to me.

I would later learn that with emaciation one of the last things that happens when a body doesn't have enough calories to burn is to lose temperature once the body had finished burning much of what's left, such as muscle mass. If anything, this objective measurement in my records reflecting my emaciation only redoubled my concern that my health issues were being ignored by medical doctors! But what could I do except seek the advice of the student psychologist I had started to see? I would soon get frustrated with him and find someone else to see.

During that time I had developed a line of pain going down the back of my left leg. At first I thought I must be sitting funny at my computer chair and tried different positions without improvement. The pain just persisted and continued to grow worse to the point that over the counter pain killers didn't mask it enough to let me fall asleep easily. I made a new appointment to see my assigned doctor at the community health clinic. When I arrived, Betsey listened to my complaint with concern and did some mobility checks with me and then made an appointment for me with their 'pain specialist'; she had been very impressed with him and was sure he could help me.

When I arrived a few weeks later I checked in and was directed to next check in at the doctor waiting area. When I was called, I was ushered into a new exam room, or so I had at first thought until I got there to discover a small room with just a chair and a love seat and nothing else, it was like a smaller waiting room. I thought the nurse had brought me to the wrong room but she confirmed the name of the doctor I was supposed to see and it was the same name I had been told and so I took a seat and waited. A moment later this new doctor came in to see me and asked why I was here to see him. I told him about the line of intense pain going down the back of my left leg and he still didn't know why I was there. I told him that I was told he was their 'pain specialist' and he would be able to help me with it. He told me he was actually the clinic's on-site psychologist and didn't understand why I had been sent to see him. Did I know why? I didn't. And as he didn't know either, we mutually concluded the appointment had been setup by mistake and I was immediately back at the doctor waiting area desk to make a follow-up with Betsey to find who the right doctor was I should have seen.

The following week I saw her and asked about their 'pain specialist' I was supposed to have seen as I had been sent to the wrong doctor. It turned out I had been sent to the right doctor she thought I should see about it. I told her that when I told him about the line of pain down my left leg he said it wasn't the type of issue he helped with. So how was that the right doctor for me to have seen? She just said with that and my multiple other symptoms, she had felt he was the right doctor to see about 'my pain'. Did the clinic have an actual, medical, pain specialist who could help me with the line of burning pain down the back of my left leg? No. Was she going to help me with it? No, she answered with a polite smile, she 'didn't think it was something in her field'. So who should I see about it, then? I asked in frustration. She didn't know and that was the end of the appointment.

After my bizarre time with the female counselor came to an end as noted in the previous segment, I was once again back to the doctor referral helpline and they had nothing left to suggest to me, so with little other clue I pulled out the phone book and looked through the yellow pages for counselors and began to pull names out at random. For most of them, they had answering machines and I would leave a message asking if they were taking new patients and if they could help me with issues working with medical doctors, a few were at offices with a receptionist who told me they weren't taking new clients. Of those I left messages with, most didn't call me back, some that did recommended I just see another medical doctor and get a second opinion. When I explained I'd been doing that for years and not been able to find one to take my health issues seriously, they didn't know what to make of that and either way didn't think they could help me.

The aide for one of the doctors called back and told me he was accepting new patients and we set an appointment. When I arrived at his office, I was ushered into a large area with plants and a windowed wall letting the afternoon sunlight in. And then he arrived and I realized he was the same psychologist as I had met at the community health clinic. This resulted in our mutual surprise as I hadn't recognized his name in the phone book and he opened up his copy to review the listings to find they had misprinted his name in the book, using his first name rather than his last. Still, since I was here why didn't I talk to him about what the problem was?

I told him that I wasn't comfortable about it as I thought it would be a conflict of interest given that he worked with the very community health clinic staff I wanted to talk about. He noted that, since I was already there and he didn't have anything else scheduled we might as well talk a little bit about it. So I decided to give him the gist that I was seeking a counselor who could help me understand why so many people in the medical profession wouldn't seriously address my health issues and used the burning line of pain down my left leg as an example. Rather than having a complete medical work up to figure out the source of the pain and address it, I had instead be sent to see him without either of us being told why.

He reflected that we had concluded it had been a mix-up, hadn't it? I answered that I was told at my follow-up appointment with Betsey that she had sent me to the right doctor in her opinion and otherwise wasn't going to address it herself. That didn't make sense to him and he didn't know why she would have told me that. And that was exactly why I had been looking for a counselor, I told him, to help me understand this and work out a strategy to get by the problem so I could have my health issues successfully addressed. Did I want to work with him about it? I again said I felt it was a conflict of interest given that he would likely want to support his colleagues rather than me. He agreed that might be the case and we decided to stop there. He asked if he could write a note about this meeting to add to the community health clinic's records. I asked him not to and he agreed.

When it was time for my next three month supply of fat enzymes, I was to get the script from my assigned doctor, Betsey, then take it as before to Premier Medical Center to have their doctor copy it under his name and then I could get my next three month supply from their pharmacy. After this proforma appointment with Betsey where we didn't talk about anything else but the renewal of the prescription, I went back to the records department to ask for a copy of my file since I had last seen it. My hope was to again get insight as to why I had been sent to the on-site psychologist rather than a doctor who could help with leg pain. Again, the records shed no light on that decision, but the copy did include a report by the on-site psychologist about our meeting outside of the clinic in direct contravention to our agreement at his office!

In Colorado, it seemed patient confidentiality meant absolutely nothing.

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