Friday, May 22, 2015

My Really Bad No Good Horrible Life

I want to tell you what happened to me in early 2013. To start with, go to this former post, which came my way today via Facebook's throwback machine. See how creative it was, see the lightness of attitude? See me, as a person who was not brain damaged by a prescription medicine. A bipolar woman who did not have 48-hour rapid cycling.
So here's the cause and effect, laid out for you:

twenty zombie years of lithium damages my kidneys --> (that's an arrow, meaning leads to) 1,000 mg of steroids at kidney transplant -->
I can't sleep after that -->
Psychiatrist Darryl Brush prescribes Seroquel for sleep, then more -->
I notice facial tics. It's tardive dyskinesia -->
[Brush tells me to discontinue the Seroquel. Now I can't sleep again, but he says he can't prescribe anything more, I take too many medications for anti-rejection, blood pressure, fibrillation, thyroid. He doesn't tell me to be careful, that the TD might affect my balance, or prescribe gait and balance therapy. Later the neurologist will do that. But I've already fallen by then.]
The TD affects my balance and I fall. A bad fall off a stepstool. -->
I hit my head hard, and get a concussion.  -->
[and get a compression fracture in my back. That's not nothing, but it's another story.]
And that's the end of it for me.

I had entered the years of being weird.  After a while I noticed that I felt great one day and horrible the next. I marked predictable good days on my calendars and scheduled everything only on those days. But on the good days I was high, so I didn't get things done; instead I did crazy things like buy a Loudmouth Leo the animated speaker. I wrote lots of first drafts and forgot about them. I tried to find something about 48-hour cycling on the internet, but can't - I don't know that in studies this is called 48-hour rapid cycling. I didn't see another psychiatrist - would you? Thank God there's Leo to make me smile.
Leo the Lion, because humor saves us 
On the bad days I sometimes get dressed. I do not let myself dwell on ways to kill myself. There is no clear middle space, the kind of time in which normal people do ordinary things like balance the checkbook and get the oil changed.

At last my husband tells his doctor about this, and she says, Oh no, that won't do. She has to get this fixed. She writes down the names of three psychiatrists. I glance at the list, I have less than no confidence in psychiatrists now, but I've met one of them, so I make an appointment with him. He is not on Medicare and costs $10 a minute. And guess what - he knows about this condition. He prescribes epitol (brand name Tegretol), maybe the only psych drug I haven't had a bad reaction to. And guess what? This 48-hour rapid cycling is a known condition. It can happen to bipolar women who have a closed brain injury.

After a slow dazed week it worked. It worked so well that every day was the same. I started to have a normal life.  But the story didn't have a happy ending there. It suddenly stopped working. He raised the dose, another dazed week, now it's working again. He explained the mechanism, how this happens with Tegretol, and is confident it will stabilize within the year. Christ, I hope so.

I am writing this because I want to leave footprints for other bipolars. And most of all I want to spread this message --

Don't take Seroquel unless it's really necessary. 

Not even when it's called quetiapine, the generic. It can ruin your life. It's a powerful drug that should only be taken with care when severe episodes are a problem, not as a sleep aid. It can and does cause tardive dyskinesia. And TD can harm you as it did me. Permanently.

Monday, March 16, 2015

Don't seek the truth --

The rest of the title quote is "just stop cherishing your opinions." Another quote from "Trust in Mind," or The Hsin Hsin Ming. I liked the quote before I knew where it came from. "Trust in Mind" is like that. Many people know its first line:
The great way is not difficult for those who do not pick and choose.
And that's the whole message of Zen, over and over, isn't it? Just accept reality. Don't keep fixating on Want this, Hate them, Don't like, Won't . . . Just greet whatever comes to your door. It's that easy.


The other day I was driving up High Street, which borders the giant football school  here in Columbus, and is always kind of interesting, when this poem came to mind.  The gray snow was heaped alongside the melting streets, and the off-white sky had gray clouds in it, and I thought, Ugly. I prefer sun.

Here in the temperate zone we have intemperate winters, and everyone loves sun, believe me. We all tell each other we feel better when the sun is shining. Funny, but people feel guilty about that, as if we shouldn't care whether the sun is shining. But that's not quite Zen. Everything affects us. Of course we have preferences. We just don't want to be overly attached to them.

Driving up High Street into the no-sun, I thought of the Hsin Hsin Ming. Because "beautiful" and "ugly" are evaluations, the kind we call dualism.  So I thought, What if I don't call this ugly? (Though it is, my mind persisted.)

It was not easy to drop my reaction: Ugly. I've always lived in Ohio, and I'm sure I heard it in the womb, we hate winter, winter is hard, we love summer, can't wait. But I kind of got it for a second or two.
A week later: This post has been sitting in the draft box, with many other limp ideas. But today The Hsin Hsin Ming happened to me again.

I was determined to give myself two hours to work on my poetry, and was in the throes of capturing lost poems from my email box, poems written on my iPad and sent to me, and everything wanted to distract me. My to-do list. My new Buddha box. The gold fingernail polish I just discovered among my things. The nice, springlike day. And I thought, When it's time to write poetry, just write poetry.  

It struck me as another example of not picking and choosing, just doing the work at hand, the scheduled work, which was the right work for the moment. So I did.

Tuesday, March 3, 2015

This, Too, Shall Pass

You guys can't imagine how many times I begin a post and don't finish it. Because it takes time. Energy. Thought. The confidence that you have something to say worth reading.  I don't really have any of those things these days, not on a predictable basis. Bad ups and downs - and when the ups are bad you have your truly undesirable bipolar disorder, the kind that makes headlines if you are famous.

But one can say Buddhist things about all this. Here's one: what helps me a lot is to remember ~
This too shall pass.
Daniel Terragno told me that once, in regard to a very pleasing state of mind I had encountered on a retreat.  He was sure right.

In all seriousness, when things are bad, we need to remember, oh, it's just life. And gosh, the Buddha was right about suffering. And it will pass. I honestly believe that's the best suicide counseling I could give. That and, tomorrow is another day. And oh, spring comes and the grass grows by itself. (Basho)

You're probably wondering why I have been able to post this sketchy thing. Well, by restraining myself from making a fancy sign that would say This Too Shall Pass. By staying up past my bedtime.  By not discussing whether the commas in the title are definitively better than the lack of commas in the saying in the text, and linking to the great article I just read in the New Yorker by a comma queen (copyreader). By not fact-checking the Basho quote. Like that. Being bipolar, you have to learn restraint of the many many creative ideas that won't get the humidifier cleaned....Anyway, I just saw this cartoon and wanted to share it.  A great one. Let us smile at ourselves.

Tuesday, February 10, 2015

What is Zen practice?

 I don't hold with embarrassing people or dogs (you can't embarrass a cat) so I have modified this quote from a blog, and present it without attribution:

"For me, Zen practice includes not just zazen (sitting meditation) but all of the other aspects of Buddhist practice such as chanting, prostrations, sutra study, and the like."

It's not that I disagree with the above forms of practice; I just don't think all that describes the fullness of Zen. That's because I take Zen as a form of Buddhism, a religion with an ethical code, not a personal practice.

This reminds me of something I overheard once after a sit.  The guy who said this was a regular in the sangha I practiced in then.  Talking to another Zenner, who had just spent a week at Zen Mountain in New York state, he said "Don't you just wish you could go there for three months and really practice?"   I thought, He doesn't get what practice really is.  The real practice is waking up to your life. To fully live your own life compassionately is the whole thing.

This guy was married with kids, and owned a business. Like many entrepreneurs, he was charismatic and had the I Can Do That mentality that sometimes leads people to take on more than any reasonable human can do. I'd heard him talk about the impossibility of finding 20 minutes to meditate in the morning.  And it can be hard. The very act of persisting until you make that time, that is enlightening. Confronting the conditioning that says you have to be striving and useful every minute. Realizing that you don't have to hold the universe together every minute of the day. This endeavor can help us see ourselves more compassionately.

There are guidelines for life as practice in the Noble Eightfold Path, which is more than a few tips. That path, put forth by the Buddha, includes our behavior in this world of dew. It tells us how to avoid harming ourselves and others every moment.  Right speech alone can be the work of a lifetime, as it includes right listening and also, at times, keeping your thoughts to yourself.  Which I did that day.

Wednesday, February 4, 2015

Things I Want to Buy and the Three-Day Rule

A recent review of my personal finances has led me to once again list things I want instead of buying them with one-click on Amazon.

I don't need one-click shopping to get in trouble. I did this for a while some 15 or 20 years ago when I thought I needed a cool-down period before shopping.  It is a simple habit. When I want to buy something (other than groceries and other necessities) I write it down (on the memo on my smart phone), with the date, and refrain from buying it for three days. I'm not "postponing" a purchase. I'm giving an impulse a waiting period to see if I really want the thing in three days or have thought better of it.

I'm sure I picked this idea up from a helpful book.  Not the book shown to the right. It's here because it was a sudden keen desire for this book that made me suspect I need to slow down and finish the last book I bought.

I learned about this book in one of John Tarrant's generous pieces on koans. This one was, "If you turn things around you are like the Buddha," which Tarrant notes is found in the above collection.   I think you do it like this:

You have a thought ~
I waste too much money on impulse items.

You can turn that around and think~
I don't waste money enough.
or, in my case,
I don't waste enough time.

Actually, I personally do.  I waste a whole day every Sunday.  And I waste money enough, I believe. Yesterday my new UP24 arrived. This is a bracelet (like a FitBit) that coordinates with my phone and logs my steps, graphs my sleep, and vibrates every 45 minutes to remind me to get up and stretch. And logs my food, if I want it to.  It seemed like a silly luxury, but 24 hours with it has me feeling like it's the greatest thing I ever did. I think it will help me get back in shape and be honest with myself about what I eat.
from HenriettaAndMorty on Etsy
The above pillow, on the other hand, is pretty nonfuctional.  I added it to the wait list yesterday.  Buddha with a sense of humor. Really, I love it, and if I had to choose I'd probably get more joy from it than another book of koans.  I do like koan work; over the years it has nourished my general ability to feel joy.  Here's a personal koan I have often carried with me when I shop for clothes~

Does this make you want to do a little dance of happiness?

Actually, it does.