Saturday, September 26, 2009

Loss

John McManamy has been on a theological kick.  So I thought I'd take a turn, it being my profession anyway.

The relationship between GoD and DoG is one of those enduring theological themes.  Here is one contribution to the discussion:



This dog reminds me a bit of my own, named Mazie -- Amazing Grace.  Except there are too many stars in the lower right corner of the constellation, a leg that she lost a long time ago.  Move those stars up to form her crown chakra.  For twelve of her thirteen years, people have watched her run and said, "That's Amazing!" -- the inspiration for her name.

Mazie is a therapy dog.  Not officially, she never received the training.  Now she has renal failure and it's too late.  But everywhere she goes, she finds the person who needs her.  When I took her to visit the shelter for victims of the Iowa floods in '08, she stopped to visit with each one.  After an hour, I was depressed and weary -- the start of my latest relapse.  I thought it was time to go.  But no, she pulled on the leash and told me she hadn't talked with that man who was isolating, sitting by himself under that tree.  And she had to hang around until the Red Cross worker got off shift, to give her some of her grace, too.

People have to ponder a three-legged dog.  After a few years, I stopped making smart remarks to the same question I heard over and over.  I came to realize that through her, people consider their own experiences of loss, and the consequences of loss, and the life she leads without even noticing her loss.

How did she come to be a therapy dog?  We don't know the before story.  We only know the after, the kindness of a farmer who went out of his way for an injured stray, a no-kill shelter that is very picky and does home studies of the people who want to adopt, a vet and staff who treat her as a queen, the strangers who flock to her and, I believe, bring their own need for gentleness to the gentleness with which they approach her.  And she responds in kind.

Will she get her leg back in heaven?  I don't think so.  On earth, the only handicap it causes is that she can't pivot to the right at a full run without falling down.  I think her only wish is that in heaven she will lose the leash, so she can do what she loves to do, to run like the wind in three quarter time.

I knew somebody who was born with a foreshortened arm.  It ended at the elbow, with a stump of a hand.  She always objected when some religious person reassured her that she would be whole in heaven.  She said she was already whole.  And she was.

What does it mean for those of us with mental illness to be whole in heaven?  All of the life experience that makes us who we are includes the experience of mental illness.  Will we lose that?  Who then will we be?

All of the loss in this world -- a friend is reading a midrash of Exodus.  [In Midrash, the rabbis explore the meaning of Scripture through story-telling, expanding and deepening the levels of the text.]  One interpretation of Moses at the burning bush is that he initially refused the call to go free the Israelite slaves in Egypt, because -- what about the ones who were already dead and buried in the walls of the pyramids that they died while building?  Who would let them go?

Will God have an answer to your question?  I don't know that I want an answer.  I want it all, us all to be gathered up, none of it and none of us to be lost.

A psychiatrist tried to reassure me once about Electro-Convulsive Therapy, ECT, saying that usually the only memory loss was of the events immediately preceding the treatment.  And usually people are so unhappy before treatment that they are glad to lose those memories.

It was not a convincing argument.  I don't want to forget.  I don't want to lose any of it.  It is part of me, even the pain.  I guess I want for it to mean something.  I want to be able to ask God to answer for it -- like the Holocaust survivor who insisted that he be buried in his Auschwitz uniform instead of the traditional Jewish winding sheet.  He wanted to stand before the throne of judgment wearing the evidence that would itself say, who is judging whom?

Maybe what I really want, for Mazie, for those lost in the walls of the pyramids, and in the ashes, and for those who are in such pain that they want to lose their minds, for all of us, is to be found.

Tuesday, September 22, 2009

Alive!

Cut the top ten and go straight to the number one reason why Willa Goodfellow should never get herself committed to the psych ward:


I suck at arts and crafts.

I didn't used to.  I used to produce Christmas cookies and gingerbread houses that made adults and children alike respond, "Oh! My! God!" -- though not the way this cake does.  I used to make big gingerbread houses.  No kits. and no showing off with royal icing and special decorating tips (which might have improved this cake, if I had been able to find them).  I used Golden Grahams for shingles, individually placed sprinkles on the door wreaths, graham bears ice skating in the yard, pretzels for fences.  I made Dr. Seuss-like trees out of marshmallows and gummy savers, M&M's for roofing material, or maybe candy-canes for the Swiss chalet touch -- those were a bitch to hold in place until the frosting glue dried.  Once I used peanuts to construct a fire chimney.  All color coordinated.  I must have made thirty of those suckers, and each an original masterpiece.

Then I took Prozac.  And Celexa, and Cymbalta, and Effexor.  And part of my brain has never come back.  I think the part that departed included the "good taste" part.  Also the "give a damn what you think" part.

This cake and the guerilla party I held in the hospital lobby to celebrate the 45,000,000 people at risk for suicide who will survive it, the same hospital whose psych ward I hope never to call home, definitely come out of the "Prozac Monologues" spirit.  So does the grammar of that last sentence.

This one, I am submitting to cakewrecks.com.  So, Elaine, (a friend who happened by the party and was speechless) you can go ahead and say it.  Yes, I know.

Some people actually do get it.  One of the guests was a psychiatrist who laughed along when I bemoaned having thrown away all the meds I have stopped using over the course of the Chemistry Experiment, so that I was reduced to Smarties and Mike and Ike for decorating material.

So...

"I have a dream. Okay, technically it's a fantasy." [Elmont, Doonesbury]  That when people who survive self-injury are transferred from ICU to the psych ward, they will be greeted with a cake.  That when they get home, there will be a party, just like the party that will greet my friend who just made it through colon surgery.  A quiet party, befitting the energy level of the guest of honor.  But a party with a guest of honor, for having survived this latest round with a disease that has a 15% mortality rate.  I have a fantasy that people who survive self-injury, or manage to avoid it altogether, will be treated like people who survive breast cancer.

I have a fantasy that next year the Psych Department itself will host the party for Suicide Prevention Week, with both Emergency Room workers and the patients, out on a pass, sharing the honor.  For sure, the hospital-catered cake will look better. 

Sunday, September 20, 2009

To Survive

To all of us who are surviving treatment resistant depression.



I’m coming up only to hold you under
I’m coming up only to show you wrong
And to know you is hard and we wonder
To know you all wrong we were
Ooo Ooo

Really too late to call so we wait for
Morning to wake you is all we got
To know me as hardly golden
Is to know me all wrong they were

At every occasion I'll be ready for the funeral
At every occasion once more is called the funeral
Every occasion I am ready for the funeral
At every occasion one brilliant day funeral

I'm coming up only to show you down for it
I'm coming up only to show you wrong
To the outside, the dead leaves, they are alive
For'e (before) they died had trees to hang their hope
Ooo Ooo

At every occasion I'll be ready for the funeral
At every occasion once more is called the funeral
At every occasion I am ready for the funeral
At every occasion one brilliant day funeral

by Band of Horses

Wednesday, September 16, 2009

Ten Plagues

I dreamed about ants this morning.  Little black ants, covering every surface.  Gnats, too -- so thick I had to breathe them.  There was some kind of family gathering going on, pretty much oblivious to the ants and the gnats.

I woke up and thought -- the ten plagues.  [See Exodus, the second book in the Bible.  The Prince of Egypt was based on it.]  Then I remembered, last month in Costa Rica I woke up one morning from a dream and thought -- the ten plagues.  I don't remember which plague that one was.  Frogs?  Blood?  It wasn't the deaths of the first-born.  I would remember that, being one myself.

I get these dream series every so often.  For a couple years before I went back to school, I dreamed about vehicles that broke down.  The tire went flat, the axle broke, the runner fell off the sled... The first couple years of my current episode, I dreamed of a young man.  I thought his name was Steve.  I thought he was my depression, though he didn't like it when I called him that.  He always felt threatening in some way.  Then I took a leave of absence from work and learned to work with my dreams.  And in the end, he was always helpful.

I don't remember ever having a series of good dreams.  Why is that?

This morning I told Helen about my dream.  Helen is a spiritual director, and her favorite thing is dream work.  She said, "If you have a bad dream and do dream work with it, you allow it to be instructive and productive, grace-filled and gift.  If you don't do dream work with it, it will continue to feel like just a bad dream."

That proved true with Steve.  So I did a bit of work.  I carried the story forward.  I wonder which plague comes next.

Let this woman go!
photo in public domain

Friday, September 11, 2009

Suicide Prevention Cake

Okay, I know.  It's supposed to read Suicide Prevention Week.  I had a post all written, an attempt at a thoughtful response to an exerpt from Nancy Rappaport's book, In Her Wake: A Child Psychologist Explores the Mystery of Her Mother's Suicide.  I found it on Knowledge is Necessity, one of my favorite blogs to follow.

But before I ever heard about Suicide Prevention Week, I gave the topic a whole month just last June.  And I do recommend that you look at those posts, especially the ones that refer to David L. Conroy, "Suicide is not a choice.  It happens when pain exceeds resources for coping with pain."  Those two sentences open his book, Out from the Nightmare, help to make sense of a topic that people would rather hold at a distance, and give a simple program for suicide prevention.  Reduce pain and/or increase resources.

So after I did my best at one more profundity, I thought again, really, how should one mark Suicide Prevention Week?  It occurred to me, why not celebrate it?  According to Conroy, "Five million people [in the United States] now alive will die by suicide. Twenty-five million more are, or will become, suicide attempters. Suicide has been, or will be, seriously considered by more than 50 million people." [Out of the Nightmare, p. 280.]

But think about it.  In other words, 45,000,000 people now living in the United States are or will at some point be at risk of suicide, and yet their suicides will be prevented.  For the most part, by the people at risk, themselves.  We will keep asking for help until we find somebody who isn't too freaked out to give it to us.  We will take our problems apart, examine them one piece at a time, fix what can be fixed, and either learn to live with or leave behind what cannot be fixed.  We will interrupt a negative thought.  We will get a dog.  We will volunteer.  We will take our meds.  We will stop taking the meds that are making us worse.  We will find a therapist, join a group, speak out against ignorance.  Oh, it's a long list with more ideas here for how to reduce pain, increase resources and remove barriers between.

I propose one more item for the list. We will celebrate our success.  It has been some years since I went to my favorite sushi restaurant for what I thought would be the last time.  So I will go there this week to celebrate how many times I have gone there since and will again in the future. I will bake a cake for a friend to celebrate the number of times that she has prevented her potential suicide.  I will take another friend to coffee to celebrate the number of times that she checked herself into the hospital instead.

Anybody with me on this one? How will you celebrate?  And how will you give yourself cause to celebrate next year?

Tuesday, September 8, 2009

Costa Rica and Depression

This is my breakfast view on the left.  It is called patita, a vine on the edge of my porch.  I planted the seeds myself.  A stranger gave them to me when I admired it in his yard.




If I look to the right, I see "bird of paradise," outside my neighbor's door.
Some friends invited us for drinks and this view at sunset. 
 
Why the hell would anybody be depressed in Costa Rica?

I prepare my answer for friends back in Iowa.  Most of my friends already know the answer, or else are too discrete to ask.  I really just ask myself.  Why the hell am I depressed in Costa Rica.

Five years into studying this disease, it still baffles me.  I know the answer, too, and yet it baffles me.  There are psychiatrists in Costa Rica.  There are psych wards in Costa Rica.  I have seen the boxes of Effexor on the shelf of the pharmacy where I go to buy contact lens solution.  There is even Electro-Convulsive Therapy in Costa Rica.  I have read the brochure.

So there must be depression in Costa Rica.  I am simply one of the people who have it.  There is something about the way that my brain works, as there is something about the way that other people's brains work, that give us this condition that is found across the planet, in every culture, even in a place where plants grow that are called "bird of paradise."

If other people have trouble believing that it is real, why should I be surprised?  I still wake up mornings and think, "This is crazy!  Snap out of it!"

When I packed for my latest trip, I didn't pack enough medication.  Oh, I knew I couldn't get nortriptyline here in the formulation and dosage that I take -- a question I had asked in a previous trip.  So even though they aren't as effective as they used to be, I counted those particular pills carefully.  But the Valium that takes the edge off until my psychiatrist and I can find the next solution, or at least decide on the next chemistry experiment -- well, who would need Valium in Costa Rica?

So last week I found myself in the pharmacy again, asking about Valium.  It is one of the drugs for which you have to have a prescription.  (You don't for Prozac, nor for Viagra, if that might influence your travel plans.)  It turns out that the eighteen year old with the ponytail who was talking with the staff is the doctor.  No, he must be older than eighteen, not a blemish on that beautiful skin.  I went to his office yesterday, where he had his prescription pad, and he was very understanding.  Still not wanting to believe that I take Valium, I kept underestimating how many I would need before I got back to Iowa.  But he convinced me that if I truly had enough, then I wouldn't worry about it.  I had  said that at the pharmacy, that I was worried about it.  He heard me, and he remembered.  For an eighteen year old, he is really good at paying attention.

Then I asked about Lunesta.  I don't take it very often.  Insomnia is not a side effect of my current med.  I just need it when I get caught at night reliving a living nightmare.  I wondered if I could find a cheaper source.  No, they don't have that one in Costa Rica.  But that started a conversation about side effects, insomnia, SSRI's and all those things I think about.  He said they have a different attitude in Costa Rica.  These side effects are terrible, he said.  So they don't use these heavy duty meds like Zoloft, except as a last resort.  First they try psychotherapy, then very small doses of tricyclics.

I know that Prozac became so popular because it was supposed to work better and have less side effects than the older meds that they prefer in Costa Rica.  And I realize a lot of people swear by it.  But I don't get it.  Over time, SSRI's and SNRI's have turned out to be no more effective than the TCA's.  As far as side effects go, maybe fewer people have them with the newer meds -- I don't know.  That's what the drug reps say.  But if you have to choose between hard core insomnia (Prozac/SSRI) and dry mouth (Elavil/TCA), between suicidal impulses (Cymbalta/SNRI) and constipation (Pamelor/TCA), I have experienced them all, and I'm going for the Costa Rican approach.

Meanwhile, back in the world of publishing papers, there is a current buzz about an old idea, that depression serves a purpose for the species.  It may surprise you to know, but not every culture and every time has tried to extinguish the Grim when it rears its head.  The approach of the European Middle Ages was to classify it as one of the four humours, melancholia.  It may cause difficulties when the humours are out of balance.  But there is a place in this world for the melancholic.  We are good gardeners, night watchmen, writers.  Paul Andrews and J. Anderson Thompson argue for Depression's Evolutionary Roots, that it exists because it "is not a malfunction, but a mental adaptation that brings certain cognitive advantages," among them the ability to ruminate, to think carefully about complex issues and solve problems.  That is not the way my therapist talked about rumination.

I will keep reading and thinking about these ideas, because that is one of the things I do.  I ruminate.  So you will find out more about rumination in the coming months.  Meanwhile, I have a new determination to treat my depression, my body, my mind gently, to discover what I can do with what I have been given.  I am not quite ready to call it a gift.  But I am disinclined to poison myself in order to get rid of it.

Costa Rica is a gentle place.  
photos by Helen Keefe

Friday, September 4, 2009

OMG!!! That's What They Said! Significant


"Clinical studies of adults with depression showed that adding ABILIFY to an antidepressant helped to significantly improve depressive symptoms compared to adults treated with an antidepressant alone."

Okay, first let me say that this is not "Pick on Abilify Month."  I usually wander the web, (not quite so intentional as surfing), for interesting little tidbits to share with my readers.  But at my last appointment, my doctor gave me a list and told me to do my research and pick one.  So for the last month, I have had a focus.

Abilify has long since been eliminated as the winner of this assignment.  But it is such a good example of so many of my interests, including the use of language (as in this monthly OMG!! feature), marketing and clinical trials, that I can't let it go.  In fact, it gets another post later this month.  Not because I am picking on it, but because, well, stay tuned.

I found the winning quote for the month's OMG contest, "...helped to significantly improve depressive symptoms..." at Abilify.com.  It's the word "significant" that wins the award.  They really should share this award with many contestants, because that's what they all say, "significant."

The passage is found on the page intended for consumers.  So you would think they are speaking in the language that consumers speak.  This is not the case.  "Significant" in this sentence does not mean "significant" in the language that you and I speak.  The authors are referring to clinical trials, where the word "significant" is as significant as "toast," as in, "We are having toast for breakfast."  It is not significant enough to include as a facebook status update.  It is more like a twitter.  Though in FDA Land, it is the magic word, like "Open, Sesame", Sesame meaning big bucks.  So that is significant in the language that you and I do speak.  But I don't have a button for OMG Sesame!

At a University of Berkeley site, you can find the following definition:
Significance, Significance level, Statistical significance:  The significance level of an hypothesis test is the chance that the test erroneously rejects the null hypothesis when the null hypothesis is true.
 
And they wonder why we turn to Wikipedia? -- where it says:
In statistics, a result is called statistically significant if it is unlikely to have occurred by chance.

So here is the deal.  Abilify.com is talking about their clinical trials, where people who were not responding to an SSRI or SNRI, one of the current crop of antidepressants, tried adding Abilify or placebo.  There are many interesting features about how Wyeth conducted these trials, and you will hear about them later.  The point is that they had to demonstrate to the FDA that those who took Abilify along with their antidepressant got better results than those who took the placebo.  If they could demonstrate that, the "effectiveness test," then they are part way toward approval for on-label usage, and a vast expansion of their market share, because there are a lot of us around who don't get better on the current crop of antidepressants, and more of us every day.  They also have to pass the "safety test" -- an issue for another day.

So how much better?  A "significant" amount.  And as I said, that does not mean what most people think it means, as in "I feel significantly better since I added Abilify to my treatment strategy."  Did you think that it did, when they said that "adding ABILIFY to an antidepressant helped to significantly improve depressive symptoms"?  It does not mean that at all.

So what does it mean?  There are several tests that researchers use to measure levels of depression.  One is the Montgomery Asberg Depression Rating Scale (MADRS).  This is a ten item scale that lets an evaluator rank your symptoms on a scale of 0 to 6, 0 meaning no symptoms, 6 meaning whale shit on the bottom of the ocean, to quote crazymeds.  Items include feelings of sadness, appearance of sadness, appetite, sleep, suicidal thoughts, etc.  Theoretically, you could get a total of 60 points, but that would put you out of the reach of clinical trials.  They don't let people that sick into clinical trials. They want to pass their clinical trials. So they go for a crowd that is easier to impress.

There were three clinical trials done for Abilify.  The results were consistent from one to the other.  So I will use just one as an example, the third, published in April, 2009.  172 people took a placebo along with their antidepressant.  They had a range of MADRS scores, and the middle score (the "mean") was 27.1, which is moderately depressed.  177 took Abilify with their antidepressant.  They also had a range of MADRS scores, with the middle score of 26.6, also moderately depressed.  There are a variety of small differences between these two groups.  In each case, those receiving the placebo were a lttle bit sicker, but as far as I know, not "significantly" sicker.  After six weeks, both groups had lower MADRS scores, meaning that both had reduced their depressive symptoms.  That is good news for both groups, from the patient's perspective.

Since the placebo group improved as well as the Abilify group, you could infer that some of the improvement came from the experience of being in a clinical trial itself, or maybe just from the passage of time, because people with depression do get better.  But the $64,000 question for Wyeth is whether there was a "significant" difference between the two.  And the answer -- ding,ding,ding -- is yes.  The placebo group reduced its score by 6.4 points, and the Abilify group by 10.1.  So the difference between the two was 3.7.  In the language of statistics, the probability that this difference of 3.7 points was due to chance is .1% -- one in a thousand.  If you get that score for two clinical trials, that's good enough for the FDA.  And they got it for three.

So isn't that significant?  Yes, if you are a statistician.  If you are a patient, if you are weighing the risks and benefits, then maybe yes, maybe not so much.  In a test with a possible score of 60, the difference between the two groups was less than four, or two questions that were answered just a little differently.  3.7 points on the MADRS scale means going from "looks miserable all of the time" to "appears sad and unhappy most of the time," and from "slightly reduced appetite" to "normal appetite."  Do you consider those two differences to be significant?  Is that what you expected when you read Abilify.com, "adding ABILIFY to an antidepressant helped to significantly improve depressive symptoms"?

I have clinpsych.blogspot.com to thank for helping me find the original research report.  In the next stage of the Abilify story, I will explore why these results, significant or not, did NOT impress the people who actually took the medication.