Monthly Archives: January 2015
It’s so great when you know IT’S NOT FOREVER
When I lived in Woodland Towers, I thought I was doomed to staying there forever. I thought there was no way out of that place. I thought I’d die there. I tried so hard to leave any way I could. I told myself if I heard one more episode of my neighbors’ TV’s blasting Wheel of Fortune one more time I’d probably drop dead.
Actually, that’s pretty much what my brother said to me one day. “We were counting on you staying there for the rest of your life.” And rotting away.
Low expectations…..Like I was worthless. Cuz that’s how they thought of you there. Completely worthless piece of shit.
I escaped discrimination. I escaped the lies, the bigotry, the hatred that I received from my community. I walked out of that dead end situation so that I wouldn’t die.
Of course, a few people admired what I had done, but mostly, I received more hostility and blame after I left. I was told just how stupid I was. However, I’m finding out that I did the right thing.
Everyone’s nice to me here. I am valued here. I’m really busy. I’ve got friends. Loneliness is a thing of the past. I am certainly not isolated, and no one avoids me. Certainly people don’t cross the street to avoid speaking to me, nor refuse to take my calls here. Many want to pet Puzzle and ask questions about her. No one considers me crazy nor stupid nor worthless.
I’m awfully glad I’m not married to my current living situation, though. I don’t own this apartment. It’s temporary. The lease will be up soon. My friends say that since my landlady has been negligent I should probably move sooner rather than wait even the last few months of the rental agreement. I’ll tell you the nasty details later. It has to do with “repair work” mostly. And leaky pipe problems galore. Also I have privacy concerns.
I have a place lined up, in another town, not far though. I guess the frustration is universal: Waiting for that “Is it yes or no?” from the new landlord can be endless. All I get is a vague answer, or no word at all. I don’t get anything definite.
Surely, anyone who has been dying to relocate has experienced the same frustration. You want to be totally polite and courteous. But you want an answer, too. At what point do you start saying, “Can you please be more specific? Can you give me a date?”
I had been hoping Feb 1 would pan out. No word means no go. not yet anyway. I’m stuck here another month.
I’m thinking of looking around some more. Just to have my bases covered. Several of my friends have their feelers out for me as well. I’ll see ya later. Ciao!
Shrinkage had it all wrong
Today, I laugh. Those doctors asked me if I knew who the vice president was. Did they really think I cared? Sure, I’d voted, but did it matter to me? It didn’t matter, and I told them so. A person with no voice in the world isn’t going to be helped by that man in the Oval Office.
“Oh, excuse me, doc. You did say, ‘Vice president.’ Yes, I heard you. I didn’t vote for him. I voted for the irrelevant pair of them. When I was a child, long before you were born, I was told girls didn’t stand a chance of ever becoming president.” But by then, they’d already walked out of the room.
Today, I laugh. They had their priorities all wrong. They had no clue what mattered to me. They were trying to test my memory, right? Why the hell didn’t they ask the following:
“So you weighed yourself this morning. What was your weight?” See, something like that I happened to recall. It actually mattered, and I happened to recall the moment I stepped onto the scale Monday morning, August 12, 2013, the day I was already in kidney failure. I still do recall that moment. I remember specifically how it felt to see that number. I remember what I told myself.
I don’t recall watching a vice-presidential speech on TV, not for decades, anyway. Maybe I saw a few of Clinton’s campaign speeches or a couple of those silly court scenes back 1997, when the media decided to distract us by proving that he was human.
Maybe they should have asked me what I had to eat. Maybe they should have asked me how it felt every single time I went food shopping. What it was like to hold a cherry tomato in my hand and look at it, smell it, bite into it.
No, they wanted to know if I could remember the name of the vice president.
What had the vice president ever done for me? Was he planning to call me up and tell me that when I got home, he would personally see to it that my community apologized to me for the neglect I’d lived through? Would the VP say to me, “Julie, you were denied a voice in your community, and I’m going to see to it that this never happens again. You have suffered enough. I’m the Fairy Godmother. You now have a voice. Poof!”
I do wish that had happened. But it didn’t.
I had to say Fuck You to the whole scene. I had to walk out and start my life over. The best thing I ever did for myself was to ditch shrinkage entirely. I would highly recommend that to anyone. I don’t promise instant happiness but the freedom is well worth it.
Satisfaction is not happiness, nor is it health. If you are satisfied with your healthcare, it means you are a slave to doctors and appointments. That’s all it means. They own your body financially, chemically, and legally. I decided I was done with that.
On the plane, I realized my Medicaid and Medicare cards no longer had relevance. No one here asks about the USA vice president. However, we do have all sorts of tomatoes here. I dare to bite into one now. I can make an ñ on my keyboard. And I might guess my weight in kilograms. Roughly. And Puzzle’s a bit more precisely.
Tell that to what’s-his-name. Never mind. He won’t give a shit.
I want to ask the following question about “eating disorders treatment”….
So they had put weight on me. The staff person patted me on the back, saying, “Good job, Julie.”
I said, “But what about….”
The nurse interrupted me as usual, “Oh, my pager is going off. Gotta run!” She left me with the paperwork. It was my last day of eating disorders treatment and my question had yet to be answered. The question was never answered.
The nutritionist entered my room, handing me a copy of the meal plan. I said, “You said you were going to answer my question about binge eating.”
She replied, “Ask your therapist after you get out.”
I realized she didn’t have any real answers for me. None of them did.
I took a cab to the bus stop. I felt awfully thirsty. I hated the way I had to fight to get enough water in that place. Usually, during the last days, I felt myself start to get dehydrated. Once, I begged to get out only because getting enough to drink was too much of a nuisance. I stopped at a store nearby.
I thought maybe I’d buy a few things to eat, too. I picked up an apple and a cucumber. Then, it started all over again. I purchased the largest slab of cheese I could find. I bought everything I could that was budget and that I could shove into my mouth. I wasn’t even home from “treatment” yet. Much of what I’d bought I ate in the back of that nearly empty bus.
No, this isn’t a true story. But is it your story?
I say it’s not a true story, but it almost is. When I was in MGH and they deprived me of water, I left that place a raving thirsty maniac. That time, in fact, I did binge eat on the way home.
I remember once arguing with a nurse who claimed she “knew all about the medications.” She claimed I was lying about how thirsty I was. I said I’d been on lithium and she had no clue what it was like to live in my body. She said, “Don’t insult my intelligence as a nurse.”
Wow, all I could think of at that moment was, “So she is saying that she, as nurse, knows better what it’s like to be me than I do.”
That was maybe a year before finally, someone decided to take me seriously. After 30 years, they FINALLY measured output. Yep, I was right all along.
Guess I am awfully glad I walked away from all that baloney. If you leave treatment and head straight for a binge, don’t you think something went terribly wrong there?
Various Ambitions
You folks know how I can be. I get ambitions, some of which I follow through with, and others, of course, get left behind. Aren’t we all like that? We dream about all the things we want to do but often we can’t get all those things done. Some dream too small. I tend to dream too big.
I feel sad for those who have so little ambition or hope. But who am I to judge? What seems like a small step to me might be a big deal to another. “My goal is to take the dog for a walk every day,” is certainly a big deal for a person who was laid up after an injury for an entire year.
So, here are my way-too-big goals, that is, biting off more than I can chew:
I want to do one of those Survey Monkey thingies for anyone who has ever taken Lithium. So anyone can participate who ever took this drug. I would cover all angles, that is, if a person was put on and took one dose, or if a person took it for months or years, all possibilities would be included.
I would ask if the respondent had been warned about side effects such as pimples, the shakes, kidney damage, damage to the thyroid, etc. A relative can answer for a patient who is deceased.
So here’s my other idea: I want to create a site about insomnia and how I cured myself. It won’t take long at all to put the site up. I figure it will help a lot of people. But what if I wrote a short ebook and sold it for 99 cents?
Malpractice 101, what every doctor needs to know, especially shrinks
This course is most likely taught in most major medical schools in the USA today. In case you missed classes, here’s a brief overview. I was fly on the wall and took notes during all the lectures, so I’m here to clue you in on the essentials of Malpractice 101!
1. First do no harm. But if you do, don’t panic!
2. By harm, we mean measurable, provable damage. This would be something that we’d fear might be noticed by relatives of the patient. We wouldn’t worry if this is only picked up by the patient herself. We only worry about malpractice when the harm is so great that it might be noticed by others, especially those that might have leverage to hire an attorney, something that may seem disturbing to them. For instance, Tardive Dyskinesia is so noticeable that this may lead to a lawsuit. It may mean that we’ve blown it so badly that now, the otherwise employable patient is now unemployable.
3. Do not admit fault. NEVER. Never apologize because this makes you appear at fault.
4. Before the concerned relatives have a chance to gather steam, REDIAGNOSE the patient. All the new symptoms now must add up to a new psych diagnosis. So TD becomes OCD or anxiety. The patient is restless. Nervous. It couldn’t possibly be TD. Naw, she wiggles her hand because she’s compulsive. Or manipulative. Or attention-seeking. Now, give her more drugs for OCD. Have her totally convinced and playing the part.
5. See to it that there’s a gag order. This won’t be called a gag order, of course. No one can talk about such things. Just slide this one under the rug. Twenty years later, who cares?
6. You can keep harming all you want. Just keep following the formula and get rich quick.
Why can’t I see dark colors? I’m stumped on this one….
A quick google search didn’t get me any answers. Not yet. I found out the basics, but my own ophthalmologist gave me some info that I didn’t see in the “colorblindness basics” articles I read online. One thing he said was that many people who are as nearsighted as I have become end up also developing colorblindness. My nearsightedness, he says, is most likely hereditary. He said extreme nearsightedness in itself can bring on a host of other problems, so it’s good to at least be on the lookout for them.
He said at one point that my vision was changing rather rapidly. He was so concerned that he said that surely, something else was going on, that these changes were indicative of something else going on internally. He asked me to see to it that certain tests get done, for instance, my thyroid. I told him that I’d just had it tested and was waiting on the results. After all that got cleared up, I was still having one vision problem after another.
After I got completely off meds, my eyes stopped changing rapidly. My doctor said I didn’t have to come back for a full year! However, I’m now noticing this colorblindness and it’s awfully annoying.
People ask me, “What’s the big deal? You don’t drive, so….” Well, that’s not the problem. The problem is that every single thing I own is freaking black. Yep, every charge cord, every tech item, half my bags, half my containers, all my chargers, some of my pens and pencils, many of my clothes and hats and jackets….and so on. Never mind the colored things are so dark I can’t see them, either. There doesn’t seem to be a name for this type of colorblindness or even if it is colorblindness but I can’t distinguish these things and they literally “disappear” on me. If I had my way, I’d give the whole world a bright white background so I could clearly see all my stupid black objects. Or, I’d continue what I’m doing, that is, labeling every single black object I own with this obnoxious yellow duct tape. I hate yellow, but it’s the only color bright enough that I can see. I’ve had lost dark objects go missing for months, in the dark never-never-land. There should be a junkyard for black tech stuff people like me can’t see.
God bless those shiny white labels everyone else hates that won’t come off. Without them, my stuff is forever lost. I love those obnoxious laundry tags that say, “Here I am!” I hate bright colors but now, I’m forced to buy them. I won’t wear them, though. I like to hide. The good thing is, I can’ t see myself anymore. I can only see the bright shiny mirror.
I guess I got a bright future, though. That means it’s visible. On the horizon. I can’t see the damn rainbow, but that’s okay, I can see somewhere over the rainbow. Way up high. There’s a land that I heard of. Once in a lullaby.
Looking back on an eating disorder
Have you ever….
….left a store with a bottle of soda, then after taking it out of the bag, suddenly found you’d accidentally bought Pepsi instead of Diet Pepsi? You either panic and give it away, or go six miles back to the store to return it?
Have you ever….
…been inside a store and suddenly discovered you’ve spent the past 45 minutes reading food labels, unable to decide what on earth to buy that won’t make you fat?
Have you ever….
….in the produce aisle, held up apple after apple, trying to figure out which one weighs the least, without letting on that that’s what you are up to?
Have you ever….
…been scared to death to bring home any food at all, for fear that you will devour it all at once?
Have you ever….
…gotten through all your grocery shopping and you are just about done. You are so proud that you haven’t overspent. Then, right by the registers, you pass by Gourmet Cheeses. Uh oh. Camebert. Swiss. Guyere. Bleu. Edam. Goat cheese. Don’t they have any really small ones that don’t cost a fortune? How about those little itty bitty ones? Famous last words.
Have you ever…
…lied and said, “My coworkers are gonna love having these tomorrow morning with our coffee.” And rushed out of there fast, before the cops came in for their shift break. (Hint: to make that one more believable, buy coffee, too.)
Have you ever….
….fended off nosy questions about all the lettuce and radishes you are buying by saying, “Oh that’s for salad for the potluck I’m going to.”
Have you ever…
…left a therapy or doctor session utterly overwhelmed or frustrated, telling yourself, “Wow, was I ever not listened to!” or, “That doctor has no clue what it’s like!”
Have you ever…
…left an appointment in tears?
Have you ever…
…known that you live and breathe each day through these colored lenses that darken your world according to how you are going to keep yourself thin and make yourself thinner. You’re aware of that narrow viewpoint, but you cannot rid yourself of the blinders. If only anyone knew what it was like to live this way. It isn’t just at mealtime. When it’s your life, it’s everything.
Know something? I’ve been through all that, too. Even thirty years ago I went through those same things. Even now, there are remnants of it all. Just remnants, though. It’s cool that mostly, what remains are the stories from the past. It doesn’t bother me to look back, no, not at all. I’m rather thrilled to be able to remember, laugh, and know that I am still alive.
How to THINK in PESOS and give the Almighty Dollar the boot
You never stop thinking in dollars. Don’t get me wrong. But when you arrive, you have no clue what those coins mean, nor what to do with the bills. You can’t tell a $50 from a $500. You don’ t know $U from U$S. What to do?
If the price looks ridiculously high or ridiculously low, it is. Look again. See that S in there? Yep, many prices are in US dollars here in Uruguay. People pay attention to exchange rates. Here, we know stuff about the global economy. Inflation might mean something sinister. Gold means something other than just Costa de Oro.
When I came here I had to do conversions in my head. But not just pesos to dollars and back. We do metric here. I already knew kilos to pounds. Everyone who has a history of eating disorders knows that. (psst! It’s 2.2 pounds per kilo). So if I buy pollo, I have to buy it by the kilo and pay pesos per kilo. Nowadays, I no longer to four-point conversions. Don’t laugh…From kilos to pounds and pesos to dollars, then evaluate how much they are REALLY offering compared to all the supermarkets I MAY have gone to in the States (would that be “family pack”?) and then, convert back from pounds to kilos and from dollars to pesos. Then, decide. If my head isn’t spinning.
“Señora?” He’d been waiting patiently for a response. Si o no? It would take me forever before I stopped saying “yes” or “ya” and got used to “Si, Señor, un muslo, per favor.” I now know how much a muslo costs without four-point conversion and how much meat is on it. Most goes to Puzzle.
Never mind that, you need to know centimeters as well. Paper sizes are odd, too, or shall I say, not at all what I am used to. We have A4. It’s standard in some countries but I’m not used to it. Know how tall, or, rather, how short I am? 155 centimeters I believe. Even in metric, that’s not much. Never mind how many kilos I am. Puzzle is between six and seven. You’ll be relieved to hear that we do years and months the same, except the months are called by different names, as are names of the days of the week. I believe weeks start on Monday, or Lunes. It took me a while to learn the days of the week, but now, I’m sure I have them down. So if I go to a store and see the hours posted, I know what the sign says.
As for time, that, too, takes adjustment. It’s a 24-hour clock. 13:00 means 1pm. You stop subtracting after a while. I mean that. You really do stop subtracting. By the way, midnight is written 0:00. It’s not necessary to write AM and PM, though I think it’s gonna be a while before I stop that habit.
Now for the hard part. Winter is summer and summer is winter. That’s because up is down and down is up. Nope, the force of gravity is similar, but the equator is north of here. There is no upness to north and no downness to South, it’s just that we were taught that in grade school over and over and over. Down South. The Land Down Under. Under where? Under your underwear? Cuz my español can be so bad that I really do end up saying stuff like that by accident. It can be embarrassing. I heard that once one of the Expats went to a restaurant and instead of ordering food, he ordered a whore.
I hear he didn’t get what he asked for. I’m not sure how they dealt with the tip. Makes a lot of cents, right?
We Shall Overcome: My reaction to reading a poem by John Rohrer
Those of you who have been following my various activities may know that I put up a site called freejohnrohrer.org a while back. John has been stuck in a state hospital in Ohio for an unbelievable amount of time. I put up the site because the state hospital no longer allows John to do anything online. The state caught wind of his human rights activism and decided to put an end to it. Of course! We know all about how these institutions operate. Patients don’t have rights.
John’s mother, Katherine Hine, sent me an e-mail last night. In it was a poem John had written. She told me that John had asked her if I could put this poem up on the site. I picked up Katherine’s e-mail this morning. I wrote back, asking her if the poem had a title and for a date. While awaiting a response, I went back to my work on another project. I didn’t think about it much. My mind was in a zillion directions today.
After I heard back from Katherine, I put the poem up on the site. Then, I slowly read John’s words:
Cogs in the machine know purpose,
Stuck in their essential place.
Potential is subverted by the fit they can’t escape.
I read it again. Slowly. I imagined hearing John’s voice reading these words. Then, I imagined how it would feel to read these words aloud to an audience. I am a person who thrives on the open mic experience. I always loved reading aloud. Stage fright was never much of a problem for me. I always figured that this was due to my extensive musical past. Of course, that was all long ago.
Cogs in the machine. Listen to me. I don’t give a shit what anyone thinks. I wish I could shake every person and get the damned cotton out of their ears and take the blinders off their eyes. Do you know what is happening right now?
The world ain’t so safe anymore. You can hide behind those TV screens and commercialism, believe what their money is telling you, and do all the feelgood you want. You can stay a sheeple. If you continue to buy into staying satisfied, then you buy into slavery to the system. Are you going to stay silent any longer? Or are you going to dare to speak out?
Thing is, satisfaction may seem cozy, and you may like it well enough, but you’re satisfied at the expense of others who are being tortured as we speak. Those in state hospitals aren’t bad people. Anyone can end up there for random reasons.
Do you recall Gloria, who ended up in a state hospital in New Jersey for purely random reasons? This was bad luck, guys. This had nothing to do with morality. This had nothing to do with illness. Nothing. She was in a group home and one day, she refused to take a shower due to sanitation issues. They assumed “poor self care” and wouldn’t even listen to her side. She was put in a state hospital. She lost her bed in the group home. One day, another patient attacked and blinded her. She’s so traumatized that she’s been reduced to a childlike state. Folks, is this a person who is a criminal who “deserved” something like this?
Guess what? There are no criminals. There is only bad luck.
We all need to approach those we have assumed were bad people and ask, “What happened?” No, don’t demand, “What the hell is WRONG with you?” but “What happened?”
You may be surprised at the answer. There are no bad people.
It is my dream that we end imprisonment and labeling. There is no place for psych labeling. It only does people a disservice. If you go along with it, you are condoning what eventually ends up being imprisonment and torture of people who have done nothing wrong. Do you really want to support this? Or do you support change?
I get so frustrated and I often wish I could talk sense into people. I suppose I need to be patient. I used to believe “diagnosis,” too. I’d swear by it and fight for it. I often felt defensive over my position. But those days seem so long ago. Now, I am fighting the exact opposite, and will die for what I believe in.