Dear friends

Dear friends,

I write this with full awareness that very few will read it, though I hope a few will care.

All I want is to help as many people as I can. I ask if this is possible. I am not sure. Because of my past participation in psychiatry, and because we live in a society made up mostly of uncaring people, my body now has limited time left here. How much? I don’t know. I hope many years, but really it could be very little.

I am tired of being taken for granted. I am tired of the accusations of being “mean” or of being “insensitive” when all I want is to help you all.

It boils down to bucket list. My last GFR was 21, which very well may be grossly inaccurate. On the other hand, it might be right on target. Do I have to scream that one loud and clear? That is scary close to 15, and 15 means you go on dialysis or they scramble for a kidney donation. Not that anyone’s gonna give me one. I am not worth any money to anyone, remember?

Now I don’t have thousands of Facebook friends to whom I complain daily about “chronic health condition” nor do I complain about “suffering” nor do I rant about how no one understands “invisible health condition.” If I see too much nonstop complaining from someone who has thousands on their fan list I just unfriend. They don’t need me, they don’t need my “likes.” What next?

I do, however, warn people to stay away from psychiatry because that is what caused all this for me. They gave me pills I never needed, then LIED. I’d be living into my 90’s if it weren’t for mental health, which did nothing to help and only made me sick. Stay away from psychiatry. Stay away from what is essentially a bottomless pit, a horrible scam, a one-way ticket to HELL. Talking about it is how I help many people and I will do this till the day I die.

I’m not a monster, never was. I am not violent. Never was.

I know talking about death makes people uncomfortable. Well, tough shit.

Meanwhile, I don’t feel sick. I’m not suffering because I learned to laugh. I enjoy my life and I hope you do, too.

 

 

What the Nuthouse Never Taught Me: The Rodent Project

A few months ago I informed my absentee landlady that I have a rodent problem here. That is, a large rodent is chewing on the side of the house. I’d say the corner side. Most homeowners would care about this since chewing rodents will devalue the home. Possibly wrecking it. Maybe not. I went outside and looked around as soon as a realized what was going on.

I noted that there’s some concrete out there, near where the home next door is situated. It’s a bit hard to explain. Their house is higher up, so we have a wall that holds the ground between the homes (think: dam, but not really). I think there’s a word for that type of wall. These two houses are uncomfortably close together. I dislike this tremendously, and I would not ever purchase a home that was so close to another that I could hear conversations next door. However, I rent, so I can leave if it’s not so cozy here at some point. Meanwhile, the good part is that next door they aren’t home that much. Good.

I don’t hear them when they are indoors with their door shut, but when it’s open, I hear them. It’s never an issue unless I get on the phone, and then, if my door is open I have to close it to ensure the privacy of whomever I am speaking to on the phone.

I heard the rodent one day. Puzzle did, too. We heard him in the evening. I thought it was the neighbors upstairs at first. But it didn’t sound like humans! Rustle rustle rustle! And Puzzle was pawing at my sink. My sink! Why there? What was in the sink? Or under it? Early morning, too, around 7, I heard it, scratch scratch scratch!

One day, something I owned was actually bitten. Chewed. And the little guy had entered my place! Yep, he came right in here, and chewed off a bag handle. This was a $3 shopping bag I purchased at a supermarket. Well, now I can’t use it to go shopping and it’s a good thing he didn’t destroy something super valuable nor chew a live electrical wire.

I made some calls. I found out just how risky it is to have a “rodent” round here. What to do and how to deal with it. Whom to call, and how useful it is to call each “resource.” Exterminator or the town? What various people have done…what my “rights” are as tenant. What my “rights” REALLY are as tenant……

I contacted my landlady. She pretended to do something. She sent the fake repair guy who pretended he was doing something.

The rodent situation didn’t change. Months passed. Meanwhile I hear from the folks upstairs, “She doesn’t do anything,” referring to the landlady. Well, no, she doesn’t, but that’s better than a nosy landlady, right? And better than homelessness. Better than a lot of situations out there I can think of.

So a couple of days ago I smelled PISS. Rodent piss, very bad rodent piss. Under my sink. That little Devil. Geez. I got a handy spray bottle I had lying around, filled it with creosote and lemon juice (these cost pennies, by the way) and sprayed in there, coated the wood. I let that dry. Now it no longer smells like Piss.

So then I took a flashlight and did my best to see where the rodent was making his way inside. That was hard. I do not see well. But I figured that out. He wiggles in through the back and has been using my cabinet as a potty.

So for temporary, I did the following: I took my night light out of the bathroom and wired it into the kitchen cabinet. Now, the cabinet isn’t dark. It’s lit up. Rodents are nocturnal. My rodent visitor won’t go in there because he will think it’s daytime in there. He will be turned off, right? He goes to dark places, not to light. Last night he didn’t come around! And I’m not using a ton of electricity shining a tiny light in there. This is a humane way to keep that guy out. No KILL.

They never taught us common sense like this in the nuthouse, did they?

Now, for the cabinet itself. I want to repair it so the bottom of it does not look like it was used by a rodent to go potty. I think what I am going to do is to cover the wood entirely. I thought of painting it, but painting won’t do the trick since you can still see the wood is horribly warped.

My other plan is to buy chicken wire and wire cutters. Total cost will be under $10 and I can reuse the wire cutters. I will also need a supporting beam, a 2×4 which the guy at the store said he’d cut for free. I want 41 inches long of 2×4. The cost? Under $5, and I have a coupon that will cover that.

When I’m done laying the 2×4 in the back and the wire, then I’ll have all the wood covered with wire and the back opening blocked with the board. While a rodent can easily chew through wood, this is just to give him a very hard time. Besides, the wire will make it mighty difficult.

Right over the wire plan to lay foam placemats. This will give the bottom of the cabinet a finished look. Each placemat won’t cover the entire 41×23 space so I will join them with duck tape.  These are foam decorative PVC placemats that cost a dollar or two each and come in a set of 6. I’ll use matching duck tape. My choice of color. As soon as I can afford all this.

Meanwhile, continue keeping the area lit. Dear Rodent, you need to find another outhouse.

Not bad considering I can’t see very well.

The above, which was loads of fun to think up, is DOOR NUMBER ONE.

DOOR NUMBER TWO: Call a therapist, utterly helpless, saying I can’t cope, in total panic, wait for reply…….. (This is the road back to the nuthouse, by the way…….)

 

What we believe in

As far as I am concerned, if you don’t want to jump onto the boat I’m not going to waste time arguing with you telling you why you should. Jump on now, or jump on later. I feel no need to defend anything. You choose. If you support this mission, that’s great. No financial obligations. Just tell me you believe in the project. I’ll name the project later.

We believe incarceration of any type is inherently wrong.

Those who are incarcerated or who have a history of incarceration are not in any way inferior to anyone else.

Those who have a history of incarceration are disadvantaged in terms of housing, education, employment, and are socially disadvantaged, left out of many organizations.

Incarceration and marginalization rates will significantly lower if housing, education, employment, and social opportunities are granted to those who have been incarcerated, and barriers are broken down.

These principles should apply across all prison systems, including the Criminal Justice System, the Welfare System, the Disabled Veteran System, the Mental System, the Juvenile System, the Addiction System, and any other Systems not mentioned here, now and any created in the future.

Do you agree? If you do, you’re a supporter. I’m not asking for monetary donations or any time commitment. Just say yes.

When you are stuck, ask who is profiting

Almost always, when people are stuck, another is profiting off of that stuckness. This is rarely an obvious situation. If it were, we would not stay stuck. This is almost always far beyond our comprehension at the moment. Often I hear, “How can you say this? No one is profiting. This is a lose-lose situation. No one wins now.”

But ten years from now, and perhaps not until then, you will see it. The passage of time has an odd way of opening doors to us like that, a way of clarifying for us when before, we couldn’t see our way. This is the nature of stuckness.

Let me give an example. Maybe a few. I think this may have been in the 90’s, early 90’s. I was one of the first people to try Clozaril. I’m not sure of the exact year because some of my paperwork is in storage right now. I know I had to do the blood test once a week.

I was first recruited when I was a patient at a hospital outside of Boston. I was inpatient. A nurse had been chosen to be Clozaril nurse. For her, this was huge. A promotion. I didn’t know it at the time, but I am guessing that along with this new responsibility was a huge pay raise.

We called her Fitzie. So did her coworkers. Fitzie was chosen, I am guessing, over other applicants. Why? I am guessing others had applied. Or maybe Fitzie didn’t have much competition. Maybe not too many had applied. Maybe the position was wide open because no one else wanted it. Maybe Fitzie alone realized it was a hot ticket to a golden opportunity.

Well she also was going to have to do a bunch of case management. Too bad, Fitzie. Nurses hate case management but I’m guessing Fitzie was up for it. She was on the phone a lot for this job. Maybe she liked that. Calling the lab, calling in “levels.” Etc.

Why on earth was I recruited for Clozaril? I’m guessing because Fitzie was hard up for customers. Also, she wanted “compliant” customers. Not ones that didn’t show up. I was one that showed up.

Well, sorta. I wasn’t that reliable, as it turned out. Not after I realized the drug did nothing for me. Honestly, I never saw the point in taking the Clozaril. I knew, deep down, that I was taking this very dangerous drug for no real reason I could tell EXCEPT my compliance. That was it. I was never manic, ever, not even in my past. I was never psychotic, ever, not presently, nor ever. I had no real “bipolar” symptoms. I only had the label slapped on my for show. Because they didn’t know what the hell they were doing.

So I started slacking off. After a while. Deep down, I had high hopes in the beginning. I remember one discussion with another of the ward personnel, I’m sure no one that related my concerns to Fitzie, but I recall the conversation anyway.

I said, “I’m hoping this medication helps me with my eating disorder. Ever since I got on the antidepressants again, the Lithium stopped helping my eating disorder, and hasn’t helped me at all for years. Maybe the Clozaril will help. I’m holding out for that.”

That little bit went nowhere. No one even heard “eating disorder” until around 2009.

They had me on Clozaril for about a year. As a guinea pig, they asked me how my “bipolar” was. Over and over. So they’d ask me about moods. I answered.

Who profited? Them. They got to experiment with a relatively cooperative human. Who lost? Me. I gained maybe 40 pounds and was at pretty serious medical risk the entire time I was on the drug. Never mind I was out of work, too. I never knew it, was never aware of what was going on, but likely, I was being used as “control group.”

No, the whole time I totally worshiped the staff, worshiped Fitzie, worshiped my doc. I saw them as experts. And myself as weak and sick.

Any time you’re put on a drug, the governing medical institution profits. Your doctor keeps records, right? They log your supposed “progress.” Don’t you realize that’s profiting at your expense?  Unless you really get better and then, leave and go on with your life. But how often does that happen in mental health?

My suggestion? Make it happen. Leave those naysayers far far behind, and go on with your life. Truly make that your goal. Truly make it happen, and get rid of all the mythology that says you can’t do it. Because you can.

Oh no! Another non-Emergency!

I gotta laugh. I was very happy to find a veggie slicer I’ve been hunting down lately. It’s a certain type. I like to cut veggies. Tonight I decided to take it out of its box and use it since I have some veggies I’d like to slice up.

Uh oh. You guessed it. I goofed. You know those things can be sharp. I missed. Hey, that was NOT a veggie……

No this blog does not come with “trigger warnings” you come at your own risk and by your own choice.

So this got inconvenient. I used paper towels to try to get this tiny paper cut to stop making a mess. But it was such a nuisance. Besides, I couldn’t stop laughing.

I’m so glad my patient days are over. For sure if I were still a patient this one would end up getting misinterpreted. “You self-harmed, didn’t you.” And who w9uld believe a mental patient with a history like mine. and all those diagnoses?

Phew! So I did my best, one paper towel after another after another. Good thing I keep a good stock of those. What a nuisance. It stopped. I wrapped it up with an ace bandage just to be a big baby. Awww…..And laughed some more. Over a paper cut. Well too bad. Yes, they really locked us up over stuff like that. Because they didn’t listen, which was the major fault of the mh system. If I go to bed and this thing bleeds on my sheets boy will I be soooo pissed.

July 2013 revisited

This is for a friend.

Wherever you are, you are not alone. There is a word for it. Maybe if you do a search, search for the name Cathy Eck. She has a blog post on Black Sheeping. Worded and spelled just like that. She writes about school shooters and proposes that these kids are treated very badly in their communities. She proposes that these are people that our communities have neglected.

People have stopped speaking to the person.

Friends and family have stopped caring.
When the person calls, friends don’t pick up.
All this done in the name of limit-setting. Often these people are thought to have a psych diagnosis. Or thought to be kooky or reclusive.

The person may try to get “help.” Or a parent or lone family member tries. Nothing. The community slams all doors shut.

This type of situation is ripe for a shooting. Or, more likely, a suicide.

Therapy usually recommends that families back off and set limits and boundaries. This is NOT a good idea. In fact, it’s totally illogical.

Having been in that situation myself, I know now, and can say this with much hindsight.

I didn’t kill myself. I wasn’t suicidal. I did, though, nearly starve to death.

Who was responsible? The stupid therapists I saw who didn’t do anything. My community, who slammed the doors in my face. I couldn’t tell y9u how many 800 help numbers I called. Yes I told them. I specified. I begged and pleaded. I called one treatment center after another. Yes I was “insured.” I was turned down over and over.

Massachusetts General Hospital lied to me and claimed they didn’t take my insurance. They illegally turned me down. Oh, then after I signed up with Harvard Vanguard already, MGH took me back. Too late.

H. Vanguard didn’t have a single person qualified. I found that out after I was signed up. But they didn’t reveal this to me. They refused to tell me until I had signed up and was switched.

By “qualified” I mean they know a few things about eating disorders. If you have ED and you go to a doctor or therapist who is clueless it is a waste of time. One idiot even claimed I was an alcoholic!

I made hundreds of calls. I called treatment centers all over the country.

All said no. hearing the word “no” over and over of course made me feel yucky.

I nearly starved to death in 2013. Mostly due to bad care, abusive therapy, people around me who pushed me away due to unfounded fear and ignorance, the fact that decades ago my therapist told my family to “disengage,” ex-friends who treated me very badly, my former church that saw me as subhuman, and the odd little fact that once you start starving, it’s very hard to stop.

Please note: It’s now 2017. All this happened years ago and I wrote this for my friend who is having a hard time. If you have never been to my blog before and are reading it for the first time, know that my life is much different now and I’m very happy.  So please don’t worry!

I got all better from ED after over three decades (surprise!) and I live in a different place and I started my whole life over. The only thing that is the same is that I have my incredible dog named Puzzle. Which I suppose is what I really wanted.

Due to life being fairly interesting these days…..

I suppose some folks assume “once a patient always a patient.” This sad assumption is upheld in the media and also, upheld in some “survivor” circles. Sometimes, we shoot ourselves in the feet by advertising the horrors of the System. Why? Because then, outsiders assume we spend all day at it. Do we? A few do, probably most do not.

I actually don’t. Surprised?

I want everyone out there to make a pie graph. Have you ever done that with spending, that is, made a pie graph of how much money you spend on different things? I recall once doing a double-take because this acquaintance of mine was struggling to pay her bills, but 40 dollars a week was gifted to her nephews! You might think, “Oh, how nice.” But compared to her total income, that was too much! She barely got to see them. Who was this sibling who was literally stealing his sister’s welfare check? Got the point?

This woman, whom I decided I’d like to get to know better, was getting cleaned out by her brother. She wasn’t well educated. Psychiatry stole her chance at a high school diploma and her brother was milking her and breaking every promise he made to let her see his kids. So one day, I had her make a pie graph of money in, money out.

Make a pie graph of time spent.

Did you work today? How many hours, and how many hours was the commute? Many work on Sundays, and many have defined “days off.” Some do not have such clearly defined workdays and days that are not working days.

How much time do you spend on social media forums or Facebook? How much time answering emails? Did you spend any time writing postal mail? Did you spend in-person time with anyone today? Did you meet with anyone outside of work?

How much time in doctor waiting rooms? If you were to compare, did you spend more in the waiting room, or with the doc? (for my psychiatrist, that would be 40 minutes in waiting room, 15 minutes with the doc) How much time on public transit, and while on the bus, do you read, do you do mindless Facebook surfing, do you write, do you balance your budget, or sleep, or argue over the phone with your ex?

How much time do you spend practicing useless coping skills that won’t help you one bit to raise your credit score so you can get a  loan and buy a house or a car? (Hint: Keep a budget!)

How much time did you sit by the phone waiting for a therapist or doctor to call? (those were the olden days for me…..)

Did you spend time pacing today? back and forth, back and forth……… (hint: it’s the pills…..)

There is a myth out there….”Once a patient, always a patient.” If I were to do a pie graph of my time, I’d say I spend most of my time on non-antipsych activities. And certainly do not spend any time on activities my ex-therapists recommended.  Most of my focus is on developing my career. Which, sadly, I have not really been able to tell you all about. Sadly, most ex-patients are regarded with the usual tokenism that the “disabled” are treated with. Even by supposed “liberals.” Maybe worse.

To illustrate. I spent Friday, for instance, dealing with a screening that is a red tape requirement for my job. I had to travel an hour for the screening. On the bus I got out a notebook to jot down ideas for an upcoming speech I am delivering. As for the screening, there isn’t any question about it but the company requires it anyway to cover their butts. I spent several hours Thursday, the previous day, making calls to have other essential paperwork sent their way before my future supervisor, who is a very nice person with an awesome sense of humor, goes off on her vacation. I think she said a “cruise” of sorts. Northbound. Lucky me, I had it emailed but it was also faxed.

What else? This is also non-antipsych.  Puzzle has a vet appointment tomorrow. Just a check. I will enjoy the bus ride to the vet but I do not like anticipating the vet bill, nor anticipating another “procedure.” It could also mean another dreaded credit score drop. I have yet to recover from the last drop. I have spent lengthy periods on the phone with the banks trying to clear it up. “No, as you can see, I did not miss a payment. This is not due to irresponsible spending. It’s because I had a very large vet bill.”

(Hint: Don’t ever reveal to banks that you have an expensive degenerative-sounding health problem. That, and thank them profusely and tell them they’re great. The best. Tell them you LOVE their improved website. That’s how to get what you want like lower interest and a big loan.)

Meanwhile, What does an ex-patient do on the bus ride on the way to the vet? See if you can guess!

Door #1. Once a patient always a patient….She snaps a rubber band on her wrist to avoid a panic attack.

Door #2. She takes a deep breath. As instructed in therapy. And brings a paper bag.

Door #3. She takes a PRN before the trip.

Door #4. She can’t take the bus anyway are you kidding she takes the paratransit because of panic attacks. Separate but equal is just fine and makes you look special and it’s okay to be discriminated against because you’ll never work anyway.

Door #5. Actually I am likely to bring a notebook and jot down ideas for an upcoming speech I am giving. I do carry a phone but almost always it’s shut off.

Answer. Door #5. The other doors were there for your amusement and nostalgia.

Moral of the story: Once a patient, not always a patient. YOU CAN break free!!! Ask yourself what your goals in life are, and ask yourself if your money pie graph and your time pie graph align with your goals.

Financial planners make pie graphs for companies to help CEO’s understand where the money is going. One of my friends is a corporate financial planner. He loves his field. I love to talk to him because I love his enthusiasm. (When he and I get talking, we don’t stop.) He says even some CEO’s need some sense knocked into them.

When I was in my 30’s I realized I had spent hundreds of dollars on stuffed animals. I realized it was a total waste, a waste of my time, a waste of my energy, and not only that, having them made me look immature, needy and like a dependent mental patient. It was hard to believe, when I finally gave them up, that I had once been a stellar college student bound for graduate school. Owning all the children’s toys only made me look childish, wrecking my image in the eyes of others in my community. Looking back I realize just how foolish it all was.

Only you can make the changes you need to make. You do this yourself by actively deciding. Say yes, say no. Stop wasting money on stuff that doesn’t align with your real goals. Spend more time on fruitful projects and less time on activities that don’t add to your dreams.

 

Why do patients cling to their diseases?

Patients dread success because….

Many patients and survivors alike are afraid of the humdrum, seemingly “regular” life that success will bring us. This life we so dread means getting up, showering, and going to work every day. Even the thought of a paycheck won’t console us nor tempt us away from our disabilities and diseases, which we desperately cling to, no matter how abstract. It’s so exciting never knowing, on a daily basis, whether we will end up in lockup, drugged and in restraints.The suspense itself is far more appealing than succeeding and being happy. Is this you? Are you stuck? Well? Take the leap to Freedom. Ditch all that nonsense. It’s worth it!!

Hard-saved money for funeral expenses

I have money in a jar saved for my funeral. Okay, I admit, this is an old pill bottle, not really a jar at all. Old pill bottles are useful since the caps don’t come off by themselves. In fact, only a kid can unscrew the kid-proof caps, as any pharmacist will assure us…..

Either way, there this money sits, in a jar. Waiting for my funeral. Folks, how much does funeral insurance cost? These insurances zap up thousands if you keep on paying. But really, should a funeral really cost that much?

Dear pals, when you show up, see that pill bottle there that doesn’t have pills in it? That’s change for you, worth much more. Break into the pill bottle, if you have a kid with you, and then, gather the change that is inside, and go to the discount store down the street and get yourselves a frozen pizza or two. Enjoy. Now there’s a great funeral. Thank you.