He wore a straw hat, and this, I was told, was the way I would identify him, should I see him around. I looked for many months, but I never quite met up with him, though I knew the meeting place well. However, one day, I was with my friend in her vehicle, driving down La Rambla and we spotted him. She offered him a ride. Then, we sat and spoke for a long time at lunch. I told him I’d find him again, and I did, many mornings at the coffee place. We sat outside together for hours, talking about just about anything.
He taught me many new notions about the soul and auras. I had assumed this was a spiritual matter, but my friend saw it as science. He told me that one could see an aura, or some people could, and he said there was scientific proof of its existence in each of us. I accepted this, since it made sense, the way he explained it. There was so much more, too, many things we spoke about.
He told me he’d been a sculptor but had to stop, due to having pulled a muscle. I was unclear about how long ago this was. He got the pain checked out a number of times. He told me, “Maybe it’s psychosomatic, maybe all in my head.” I told him that certainly no doctor should turn him away claiming “all in your head,” that to do that was certainly not okay. He told me he felt low, that maybe it was “depression.” I responded by asking that if he felt pain bad enough to stop doing his wonderful art, then surely, wouldn’t that cause anyone to become depressed? We spoke at length about the need for passion in ones life. I told him I wanted nothing more than to see him regain that passion.
A mutual friend took him to get some tests, to see what the matter was. I ran into our mutual friend in town. He said the whole experience was rather “surreal.” Then he told me. My friend has cancer.
I didn’t realize how far along that cancer was. Not until just last night.
Another friend took him to the hospital. They kept him two months. I ran into that friend at a party a week or so ago. He explained, “I had no idea why he called, why he chose me in particular. He reached out to me and said the pain was so bad he could not sit or stand.”
During the two months, many people visited. He was loved by many here. We tried to get things to him that he might need. However, as it is in any hospital, it’s not too safe keeping valuables around. He told me he felt frustrated that bills and other affairs were piling up at home. I sure know that “limbo” feeling, when you are in a hospital and these practicalities pile up.
I had to travel to the city Monday. I told him ahead of time and tried to estimate my time of arrival. It must have been around 4pm that I got to his bedside.
He looked small, I mean, really small, like he was sunken into his bed. He was cross and grumpy at first, but then, cheered up, and we began to joke around as we often did. The whole time, he didn’t once sit up. He explained that he was in too much pain. I knew he’d be discharged the next day, and there was talk of surgery to relieve the pain from a pinched nerve. I asked myself how he would manage on his own, if he was so immobilized by pain. I knew he very much wanted to get home.
We spoke of the future. He told me he planned to turn his life around. He wanted to be more social, inviting guests over regularly. He told me he looked forward to my visit. Me and Puzzle. I told him that he was good at saving money, but maybe too good, maybe he shouldn’t be too much of a penny-pincher at the expense of personal comfort. He said he was hiring his neighbor a few times a week to cook and clean for him. “I don’t know how to cook,” he confessed. He was excited about his decision. He said he would live like royalty.
Shouldn’t we all? We are sacred. All of us. We need to honor ourselves, not deny, nor, conversely, indulge in greed, but to be respectful of ourselves.
He was set to be released Tuesday. This, indeed occurred. He tried to call me Tuesday night but I didn’t find out till the next morning, that is, yesterday. I came as soon as I could for breakfast, which turned out to be a rather late lunch. I laugh now, because he had me pick up a kilo of bacon on the way over. When I asked for this at the mercado, the women behind the counter asked me to repeat back. “Si, uno kilo,” I responded, shrugging. I explained that this was what my friend has asked for. I responded “Si” when they asked if I wanted the bacon sliced. I knew he was feeling hopeful and wanted to entertain many guests. But a kilo of bacon is one helluva lot.
I walked to his place, thinking I’d like to know the way before making the trip by bus. I couldn’t bring Puzzle, because it was too hot to take her that far. It wasn’t hard to find his house, with the sign out front declaring the home’s name. Our homes all have names, much like one would name a pet or new baby. El Refugio. That I know of, he’s not the only expat to give his home this name. What a beautiful land here, and its people so kind and caring!
It was so good to see him. His neighbor cleaned for a while, taking out the old rug and mopping the floor. We sat outdoors with coffee. Then, we came inside. The day was ending. Now, night.
I picked up groceries for him so we could have a meal. He needed many things at the house, including dish detergent. Then, I cooked supper for him. He lay in bed while eating, trying to get in as much as he could. I was concerned that he couldn’t walk well on his own. I was afraid that if he were alone, he could fall while walking even a short distance from the bed to the chair, or to the bathroom. I suggested that I spend the night. I knew this was going to be more than just one night. I told myself I’d stay as long as he needed or wanted me. I took a cab back home, grabbed whatever I could think of, including Puzzle and her stuff, and then, cabbed back. He was asleep when I arrived, at 10:10 I figure.
I tried to be quiet. I brought Puzzle in, and she sniffed around. She barked a few times. I wasn’t sure why. She was clearly upset about something. I know why now. He was dying.
Last night, I didn’t sleep, or barely. I wondered if this was because I wasn’t accustomed to having anyone else around at night. I slept in an adjacent room. He stirred many times. I had no clue how he usually slept. I wondered why I heard no evidence of smoking in his breathing. No, it was something else I heard, and Puzzle heard it first. Puzzle is most always a sound and silent sleeper. Last night, she, too, stirred many times.
I slipped out in the morning, not wanting to wake him. I gathered twigs around the neighborhood. I came back and built a fire. A fire is sacred. It felt, somehow, like a rite. Later, I left again, figuring the local store was just opening. I managed to pick up many cleaning supplies for him and also more food. It was so late when I arrived back. Was it usual for him to sleep this late? I was putting groceries away and told myself I’d call a mutual friend and ask if he felt I should wake him or not.
Just then, the neighbor came knocking. She had a question but my Spanish wasn’t good enough for me to answer. She tried to wake my friend to ask him. We couldn’t rouse him. I knew then. This was beyond what either of us was equipped to handle. I phoned 911. I handed her my phone and she handed it to me. They had questions, which I answered. They were on their way.
When the police arrived, Puzzle seemed to accept their presence without any fuss. Two cops had arrived in one cop car. I had called our friend who came even before the cops. I tried to catch him up on what had happened. The police got a sheet around him, but he screamed in pain. I told them, “Dolor,” meaning paid. So instead, they gently lifted up the mattress under him, cradling him in the mattress so he’d feel less pain. Our friend followed the ambulance and met up with him. I stayed at his place, figuring that someone should be here. I knew that if anyone with bad intentions saw the ambulance leaving, they’d loot his home if they knew it was vacant. The neighbors were well familiar with this scenario. The same thing happened to me in Watertown once when I was taken by ambulance, but when they tried my door, I was already home! I assured everyone that Puzzle was a good watchdog but I didn’t want to leave her there alone.
I got a call not long after. They’d taken him to a local clinic. He was dehydrated. I knew he had been making a point of drinking plenty of fluids. Perhaps he didn’t take in enough. They were going to give him an IV, then send him home. Our mutual friend said two or three hours. I stayed put, waiting to hear if there was any more news.
I knew then, that staying with him had fallen into my hands. I was fine with that. Our friend called, saying the hospital personnel were saying there wasn’t much hope. He was coming home. I told myself I’d stay with him. I’d do what I could. I love this man, and this, I supposed, was how things were going to be for a while. It would all be okay.
In a way, it was. I took a nap with Puzzle. I awoke minutes before they arrived. I was outside, standing there with untied shoes and Puzzle. It wasn’t just our mutual friend, but two other expats as well. I cannot recall who it was that told me maybe I should put Puzzle inside. Then, I knew.
He had died. My dear friend, dead.
They wanted a towel. Why? To cover him, they said. Why was he in the car? Finally, someone explained. He had died en route. My friend had been holding his hand, assuring him. “You will be home soon.” She knew he understood, acknowledging her. That’s when he died.
I stood there, at the steps, holding Puzzle. They were telling me the cops would arrive soon. It took a while, then, they came, asking a few questions. I found his ID and handed it to them. I wanted to walk Puzzle. I asked one of our friends if he’d like to accompany me. I felt that perhaps he needed a breather, maybe just to chat and let out whatever would come out. The police had more questions. Then, I walked Puzzle for a bit so she could go to the bathroom. We were by ourselves.
I came back. The police were finished, but they said my friend’s body would need to be taken back so he could be officially pronounced dead. Before they left, I asked to see him. Why? Because the body is sacred.
I held Puzzle in one arm. She was calm. She placed her paw on his hand as I held it. I stroked him for a while. My friend.
I came back inside. I’m here now. It’s so silent here. His desktop computer is the loudest sound. A whir. White noise.
He’d told me earlier that he had papers for me. I was confused as to why he wanted me to have them. He said he’d had them on the table but the neighbor had moved them when she cleaned. He wanted me to find them. They were for me. About me, he said, though I wonder now why he said that. I haven’t looked too hard. I see several piles. I saw a file of bills and sales slips, another pile of more recent bills, that appeared to be stamped and paid.
I found photos. His sculptures. I’d never seen these before. One of his dreams was to teach someone his sculpting technique. To pass it on. I left the photos where I’d found them. On his table was a notebook, just a listing of when he’d had various medical appointments and a few other notes. A separate paper notated a few events that had occurred while he was hospitalized. These weren’t too detailed. The cancer had started in his lungs. “It doesn’t look good,” he had written. So it was.
He was my friend. Why it was that I felt obligated to tell this story at this time, I don’t know, except that we are all stories, our lives, our deaths. Our stories are sacred, and I take stories seriously. I believe my friend did, too.
Psychiatric diagnosis is a hate crime. If these harmful diagnoses, driven by money, aren’t stopped, human society will continue to erode.
I can say in my own life, “diagnosis” was the worst of the psychiatric crimes. It tore my family apart. I ended up on disability, seemingly forever. I had no chance of employment nor career, and lived my life as a social outcast, which wasn’t my choice.
I noticed they changed the diagnosis regularly, each time to cover up medical harm.
After over three decades of living with a diagnosis, I fled my town, where I’d become a pariah, a victim of hate crimes that accelerated into a witch hunt. I moved far away. I have successfully rid myself of my medical history and diagnoses.
I’ve been here a year, no pills, no therapy, and no shrinks. Guess what? Not only am I NOT seen as crazy or “mentally ill” here, but my whole life improved. In over three decades, those doctors made me worse, not better at all. Now, in less than one year, I cured myself totally on my own, from whatever it was. For the first time in ages, I can say I am truly happy. And I’m not the only one.
Plasticity of the brain? Plasticity of the whole body and soul! People can, and do, change. Diagnosis closes off that avenue. It is genocide. They say the number of people psychiatry has killed has now possibly reached 60 million human beings. I long for the day the last remaining copies of the Baloney Bible, the DSM, collect dust in a museum somewhere.
Again, thank you for sharing this excerpt.
Julie Greene (my real name)
My first coconut turned out to be a dud. I didn’t even crack it open. After puncturing it, I saw that inside, there was no milk, and all sorts of black stuff. I read on a forum that if that’s the case, the inside was contaminated. I knew enough to toss that one immediately!
The next one was fine, even though it had no milk inside. It was a snap to puncture the holes. First, I used a corkscrew to make a hole in the top, thinking this would make my task easier.
Cracking the body of the coconut took quite a bit of elbow grease and much banging.
The part that is round is the meat, but it’s got an outer coating to it. The shells are coconut shells that have a few uses. If you burn these in a fire, you will end up with good quality charcoal,which can be used to filter water. But I haven’t put that to the test. Right now, I made a water filter out of a small ready-made charcoal filter that cost me under a dollar. I’ll show you guys sometime.
That coconut lasted a week without refrigeration. I had only a small amount left that I had to toss.
I tried another coconut. I bought a smaller one, the smallest one I could find. I was worried that it had been sitting too long, but apparently, not. This one had a small amount of milk in it, maybe 1/4 cup. I used it in my dinner. I strained it first, though, removing debris. After that, I placed the coconut on the floor, and gave it a few whacks. That split it in two. I was able to pry the two halves open and then, using my hammer, broke up on part. The shell didn’t separate as easily with this one. It’s quite delicious!
If you don’t have a grater, mince your coconut with a knife. I think you will like it!
I have beenn working on perfecting a candle-powered cook stove. I decided to look at examples of candle-powered heat sources first.
I will try to put these in order that I made them:
#1: This stove uses three tea light candles, fitted into a ceramic base (such as the bottom part of a pot for potted plant). I placed these inside a small square glass baking dish, and placed all that into a large stainless steel pot. You may see a part of a tin can surrounding the candles. This is how I cut the tin can: First, I emptied the contents by taking off one end. Then, I drew a red circle all around inside the grooves, so that when I cut the tin can, one half is somewhat larger than the other. I punctured the can, then cut all around with a hand metal scissors. I used to larger piece for this stove. Then, using a can puncture tool, the kind that produces triangular-shaped openings, commonly found in many kitchen sections or in any hardware store, I made triangles around the top of the can, that is, in the sides, not the top. I made eight of these, evenly spaced. I placed a screen over the can and then my pot. It worked! However, I wanted to improve on it because I felt that I wanted it to be more stable.
#2: Here, I substituted a round glass baking dish for the steel pot. Also, I found I didn’t need the square glass baking dish. Another alteration I did was to use the metal scissors to make triangles in the bottom, allowing more air in. I am using the same screen, upside-down.
#3: I did something similar to the smaller tin can, removing the bottom and puncturing the same types of vents. I didn’t use any base at all under the candles. Instead, I placed the candles right down onto the large round glass baking dish. I was able to use four, rather than three candles, so that meant more heat. I placed my homemade metal ring with the vents in it around the candles. I also found I didn’t really need the screen, so I didn’t use it. It looks much the same otherwise. My pots are stable on this stove. Here it is, after I cooked on it.
I enjoy doing things like this, experimenting and improving each time.
Note: Please do not cook meat or other food items “naked” on a candle-powered stove. Use a pot, and I’d also advise keeping the pot covered. Please do not attempt to use an open-flame stove such as this in an area that is fire-prone, such as parts of California. Also, use in a well-ventilated area. Do not leave the stove unattended nor allow any young children or pets to handle the stove. While cutting metal you may wish to use protective covering for your eyes. Be careful with sharp tools and the sharp edges of the can. If you wish, you can turn the bottom part a bit under using a pliers, as a safety measure. Keep lighter fluid, gasoline, and any other flammable gas or liquid, or matches far away from this stove. Don’t pick up any part of the stove with your bare hands while it is still hot. Lastly, be careful also with your hot food, do not spill it on yourself. Common sense!
Here’s a wonderful story I’d like to share:
I couldn’t tell you when this occurred, most likely 2o1o.
I was in Walden Behavioral Care’s ED unit, called Alcott. A woman who was older than me arrived on the ward. I wondered what her story was. I never found out.
You have tor realize the age range there. Most of the time, the place is filled with scared adolescents, though I must say, many acted extremely bratty. At the time, we had a rather nasty group of patients there. The kind ones were the exception. All I wanted to do was to get out of there with some piece of my dignity intact.
When this older woman arrived, they left her alone at first. But then, I began hearing the kids jeer at her. They said she “smelled.” They said she shouldn’t be there, God forbid an old hag be among them! In the same breath, they were all defending how sick they were and how much they “deserved” good care. For many, the atmosphere was far more hostile than the homes and schools they had been taken from.
I never learned the woman’s story. She was so terrified after all that that she became distrustful, and for her own safety, didn’t speak to anyone.
This was something that never should have happened. Why do young people have this intense need to single out and scapegoat others who to them, are a little different?
They gave me Mellaril in the hospital in 1983. I got tachycardia (rapid heartbeat) from it. I was told this was not an allergy but an “unpleasant reaction.” I was told to not take it again if offered, though.
I was given Zyprexa (Olanzapine) in 1997. It made me sleep 16 hours a day, and the other 8, I was a zombie. It also caused binge eating. I’ve since learned that I’m not the only one who has had this reaction. After a few days, my shrink said, “I am taking you off of this right away. You should never take Zyprexa again. Don’t worry, I will never put you back on it,” I was underweight at the time, and even though I needed to eat, I didn’t need destructive eating.
In my hospital records at Mount Auburn from 2013, they wrote that I was delusional because I said I had no medication allergies. Their records stated that since I said this, I was a “poor historian” since apparently I had “forgotten” that Mellaril gave me “palpitations.” Palpitations means your heart beats harder, isn’t the same as tachycardia, and also isn’t an allergy per se. I knew that an allergic reaction had something to do with histamine, such as a swollen tongue, rash, or respiratory problems. I was absolutely right on. So I ask, who was the “poor historian”?
They also seemed to think that just because I had once taken Imipramine, then of course, two years later, I must certainly still be on it. Apparently they were at such a loss as to what my “meds” were, though I had carefully written for them the names and doses, that they resorted to calling CVS. I suppose my last shrink didn’t remember? Did she not have records? Who is the irresponsible one?
The correct spelling of my name, my birth date and address were never verified so they gave me Julia’s drugs, not mine. They continued to call me a “liar.” Who was the stupid one here?
I got yelled at and called liar, and other names, over and over. They assumed I was an idiot since I didn’t seem to recognize this other person’s drugs, I said again and again that these weren’t mine.’t mine. I finally asked, “Did you verify the address?” They hadn’t, and didn’t apologize. Who was the one who “lacked insight”? They began to abuse worse.
Next thing you knew, they told me they wouldn’t let me out unless I took Zyprexa. I told them I had had a bad reaction in the past. I’m sure by then they were discrediting everything I said. They also tried to give me Abilify, which only two months previously had given me insomnia and mania after three days.
However, my prior shrink had told them I hadn’t seen her for “months.” This wasn’t true. I saw her every month until July 10, a month prior to admission at Mount Auburn, when I had fired her, telling her that I had already scheduled with new providers and told her who my PCP was. I saw her write this down. Who was the “poor historian”?
Oh, so I was supposed to forgive? Next thing you know, completely unbeknownst to me, they had someone (the police most likely) do an illegal search of my apartment. I never found out till I got home and found the place torn apart. On one of my tables were two bottles, which they assumed were the correct pills. One bottle was two years old, the other, three years old, and both were empty, and in a remote drawer with my art supplies.
One was 600 mgs of Lamictal. I was given the entire 600 all at once. I almost took it, trusting them entirely, since they had just roused me, but I spat it out, saying, “I don’t take this.” Again, called a “poor historian.” No, I spat out those pills to save my life. Then, they claimed I was “suicidal.” Who was the one who lacked common sense? I asked myself over and over how they were getting away with this.
Is anyone going to call me “stupid” for not taking the labels off those bottles at home? My ex-friend did. One would assume these bottles would be safe way back in that drawer. Should I expect an illegal search on a regular basis? Had I tossed the bottles in the trash bin, for sure I would have removed the labels, since I’ve heard that adventurous teens can go get refills somehow. Believe me, they tore apart everything and left the place a mess. The same “friend” told me, “No one cares about patient rights. Why don’t you drop the subject.”
I’ve since found out otherwise. Thousands are joining the Movement, more and more each day.
Meanwhile, back at the hospital, I was assumed to be delusional since I spoke of “rights.” Apparently I had none. Because I wasn’t seen as human any longer. I cannot count how many nurses rolled their eyes at me after that, and how many times the “sitters” also abused me.
This, folks was “treatment.” I got out. I was condemned in my community for not being “grateful,” because I reporting Mount Auburn for abuse. Who are the bigoted ones?
I’d rather die than go back to Mount Auburn Hospital. I now live far, far away. Because what they did to me nearly destroyed me.
I noticed that I had left out an important detail about a dosage increase, so I added that. Apologies to readers.
Here’s the link in the NY Times, about a drug trial for Seroquel that was certainly corrupt:
This is yet another victory for supporters of the family of Dan Markingson.
Please take note also of the following post by Nancy Rubenstein Del Giudice, which has gone viral:
There are so many comments it would take hours to read them all! I commented, too.
Readers of my blog have certainly heard my own Seroquel story enough times. I have learned so much more over the past few years about coverups with drug trials and about “off-label” uses of psych meds.
I can tell you the following:
I was put on Seroquel first by Dr. Michael Detke at McLean. I wasn’t fond of Detke, who was responsible for raising my antidepressant to insanely high levels, meanwhile throwing his hands in the air, completely clueless as to why my insomnia was worsening. I knew from the start that Detke was one of the worst psychiatrists I’d ever had, but I felt powerless to change this.
I’ll never forget how happy I was when, during an appointment, Detke told me he was dropping his patient load because during his final year of residency he was going into research. I can tell you I was having an awfully hard time staying awake during those times. I sat there with a blank face (as best as I could muster) then told him politely, “I’m sorry to see you go.” I walked out of there, and as soon as I was out of the building, I cheered. Out loud.
My next shrink turned out to be Dr. David Brendel. This was 1999, well before money and power got the best of him. He was known to be sweet and kind, and many remarked on his “boyish look.” He wasn’t a day over 30, most likely much younger, but looks can be deceiving. Joe was also relieved that Detke was gone.
I’ll never forget that first appointment with Brendel. I told him, by memory, my meds list. I used to amaze doctors because I could remember all the doses, and my entire history with a drug. I kept records myself besides. Doctors appreciated this because often, prior provider records were scanty, inaccurate, or out of date. (Nurses and therapists, too, appreciated it when they were stumped on how to spell the name of a drug. I always knew.)
Brendel wrote down the doses I told him. I’ll never forget the look on his face. Part horror, part incredulity, part shock. I saw him mouth something. Like whatever he was thinking he was certainly going to keep to himself. However, the look on his face, and his tone of voice was rather revealing: “That Detke is incompetent! What the fuck?”
I was off Effexor as quickly as we could do it. He told me that by all means, the drug should be tapered more slowly, however, he felt it was imperative that I get some sleep! I ended up with no particular withdrawal effects. I was so happy when sleep returned! I didn’t need therapy for insomnia! I needed to get off the drug that was causing it!
Meanwhile, Brendel raised my Seroquel to further improve sleep. I think I was taking 100 then, no more than 200 I’d say. Any sleep-inducing effect from the raised Seroquel most likely was the placebo effect, since Seroquel is known to be far more sedating at 25 than at much higher doses, but I don’t know at what dose increase the sedation begins to level off or even lower.
I was so happy to be sleeping at last! I was doing well, but I broke my leg November 1st. I learned that I had rather severe osteoporosis that had increased the likelihood of fractures. I knew damn well that I had missed periods from Risperdal, but not wanting to admit that I’d willingly taken that drug, I told people the osteoporosis was from my eating disorder.
Do you see why I did this? I felt stupid. I felt ashamed. I didn’t want to admit that a drug had caused so much harm. Weren’t doctors always right? So I thought. Nor did I want to admit that although my doctors were certainly aware that I had missed many periods from 1992 (or 1993) through 1995, I blamed myself for not speaking up loudly enough and not fully understanding the consequences. Anything but admit a doctor could make an error! No, I saw them as gods. I sort of couldn’t speak up anyway, since 1995, when the missed periods became alarming, was when they started the ECT.
I didn’t actually see Brendel that many times, since I was laid up with my broken leg for a couple of months. After that, I had three hospitalizations between mid-2000 and the end of the year. At the end of June of that year, Brendel moved on and I was transferred to another doctor.
The first was probably in June or July, 2000, at Mass General’s Blake 11. I was only there for five days and held in their “inner unit” (I don’t know the real word they used). I thought it was great because I had my own room with a terrific view. They allowed me to have my laptop and I kinda liked the privacy. I spent my entire time there writing and was never required to go to “group.” From what I recall, and in reflection, I think they realized that I didn’t need the hospital, that maybe someone had pressed the panic button unnecessarily. I don’t think they made any med changes.
The next hospitalization was at Norwood. That place wasn’t very good at all. It was run by the same company as St. E’s, Caritas, it was called. As soon as I got there I asked to be transferred to Mass General. The doctor said he’d look into a transfer, but whenever I asked, he said they still didn’t have a bed. I decided to stay put.
I ended up staying about eight weeks or so. They talked me into ECT. I continued it outpatient at McLean, done again by Dr. Michael Henry. The summer was drawing to a close. What happened was that I ended up so confused and disoriented from the shock that I stopped it. However, the next semester was starting and I felt that I was still so foggy-headed that I should take the semester off. Naturally, the shock wore off, since inevitably, any positive effect from it tends to be short-lived. By late fall I was hospitalized again at Newton-Wellesley.
I’m guessing that my Seroquel dose upon entering was 200 or so. For whatever reason, the doctor I had, a lady doctor whose name escapes me now, decided I was too thin. I think this woman was on a power trip because it was almost as if she were seeking out ED patients to do tortures on. She had been a former director of an ED clinic somewhere.
I had never been force-weighed before. It was so humiliating. They did it Monday, Wednesday, and Friday. It was done in a johnny. They forced me onto a meal plan and eyeballed me while I ate. I wondered what they were trying to prove while doing this.
I usually pee after eating. I have diabetes insipidus, remember? So I pee frequently and in large quantities (in a toilet, FYI). So I thought nothing one day of going to the bathroom, as I always did, after eating.
When Joe came to visit that night, they wouldn’t let us visit off-unit as we usually did. The charge nurse, Phil, had a rather odd look on his face. Like I’d committed some terrible crime. Joe kept asking what the holdup was, why couldn’t I get the usual pass? I recall there was no explanation at the time but I was told that the nurse would speak to me about it later.
I’m trying to recall the nurse’s name, but I’m at a loss. Gloria? No. It was somewhat ethnic-sounding, Italian or Hispanic, but I wasn’t sure. It will come to me. She was petite and dark, rather pretty, with a strategically-placed dark mole on her face. Why do patients always notice moles on staff? I’ll never know.
She told me the following, “I noticed you went to the bathroom right after eating.” I agreed, I had. What was she getting at? I hadn’t gone in there to hang myself. What was the deal?
She accused me of vomiting up my meal. I told her this wasn’t true. She accused me of lying. After that, they kept my bathroom door locked. My poor roommate had no clue why. The doctor went along with it. Once, I had to go pee badly, and begged to be allowed to do so. That doctor instructed the staff, “Watch her like a hawk! She’s VERY sneaky!”
That as so humiliating, since I had never vomited, and was telling the truth. I hated what they were doing to me. It was now the year 2000, and I’d had ED now for 20 years. So they actually thought a brief course of forced ED “care” would cure me? Apparently so. I recall one day this doctor announced to me, “We’re raising your Seroquel.” I went along with it. Why should I doubt a doctor? They knew best, didn’t they? I took the pills when they gave them to me. My dose was raised to 600.
I used to see them all coming out of their meetings. They’d finish up their conversations right there in the hallway. I happen to recall this doctor rubbing her hands together and saying, “She’ll never know.” I had a feeling she was talking about me, because she was speaking to the other members of my “team.” I believe this included the medical student. I remember watching them, wondering what the heck this all meant.
I knew, by staff’s reaction when I stepped on the scale not long after, that they were pleased that I was gaining weight. I didn’t say a word. I wanted to be polite. I wondered, though, why it was that my weight shot up ten pounds so quickly. I was immediately pronounced “cured” and let out of there.
I only took one class the next semester, Spring 2001, but did well. I always did well for whatever reason. I had an excellent instructor who pushed us hard. I published Breakdown Lane, Traveled, on her encouragement. This was a compilation of my own writings. The book was released in 2002. Meanwhile, I had a new psychiatrist and new therapist.
I wondered why I kept gaining weight. By the end of 2002, I’d gained 20 pounds, with no real explanation. I felt sluggish, too, and was having trouble writing. I never admitted it to anyone. I didn’t even tell Joe. I wondered if I was losing it. I was scared that maybe I was somehow weakening or losing my intellectual ability. My grades stayed good, so no one really knew how frustrated I was. By graduation, I weighed 130 or 140. My self esteem was in the pits. It was right after that that Joe died. It was hard to eat, but still, I kept gaining. By the beginning of grad school in January 2004, I was decidedly chubby, for want of a better word. It got harder and harder to exercise. I can’t say I flourished during my first two semesters. I got by. I was so frustrated, worrying that I’d never again be the writer I once was.
I was hospitalized in the middle of second term, that fall, October I believe. This was when my dosage was raised to 900 daily. it was supposed to be 800, but the doctor arbitrarily changed it to 900, stating that it would be “fewer pills to take.” My grad school allowed me to take an extension on the semester. I had the option of coming to the winter residency. I did so, 50 pounds heavier than I had been six months earlier. I was at my highest weight, around 200 pounds (I’m 5 foot 1 inch tall).
I felt like a complete failure. I was miserable. During that residency I thought more about my weight than I did about writing. Twice, I was bullied by other students over my weight. These were not writing students, but students from another program.
“What are you eating? You shouldn’t be eating that!”
“All fat people are pigs!”
“Yeah, pigs that can’t control themselves!”
“That combination will make you fat! Why don’t you listen?”
“She takes antipsychotic drugs! Anyone that stupid deserves to be fat!”
Yes, these were fully grown adults, several of them, bullying another fully grown adult.
I was so ashamed. I wanted to cry, but didn’t dare. It took me years before I admitted this to anyone. People told me that I should officially inform the school that this had occurred, but I have yet to do so after all these years.
I rarely left my apartment. I hid in shame, trying to cover myself. Once, I made the mistake of going to get my mail when others were hanging around the mailbox. One loud lady said, “What happened to Julie? She got fat!” She said this so loudly. I was so embarrassed that I bolted out of there.
Why was I fat? Why? I went online and found out. It was the Seroquel!
During Dr. Pearson’s maternity leave, my knee gave out from the strain. I couldn’t even stand up. I will never forget what I went through. I borrowed a wheelchair. The sides of the wheelchair popped apart because I was too fat for it. I spent three months totally alone, a shut in, unable to walk at all.
When Pearson came back from maternity leave, looking all toned from multiple sessions at the gym, I hobbled in there using a walker. I’ll never forget her words, “Julie, I didn’t know you use a walker now.” What? Did she expect me to stay on the drug until I couldn’t even get out of bed?
I told Dr. Pearson that this was it. I HAD to get off Seroquel. She insisted I’d become “unstable.” But since I was at an unhealthy weight, didn’t it make sense? I was so unhappy.
She tapered me off, putting me on Thorazine instead. I’d say I didn’t have any problems getting off Seroquel. I was so overjoyed when I finally started to see the scale go down. M knee healed. I was so happy. I noticed I could write again! I returned to grad school in the beginning of 2007. I kept losing weight. I think of it as “revenge anorexia.” By graduation in mid=2009, I weighed 95 pounds.
That’s my Seroquel story, a rather long version. I was shocked that in 2013, Dr. Pearson insisted I’d been “so happy” on Seroquel. I was shocked to hear this. I realized that she had long ago stopped listening, and that our relationship had eroded. I didn’t want to see her anymore. My last session, after 12 years, was July 10, 2013. I felt free. Free of her, but not free from all the other ordeals I had to face.