Wednesday, November 05, 2014

Been awhile.

I'm 55. Here are things I think I believe.

-I believe there is a loving, creative energy in the uinverse that we can access nearly any time we are in a state to receive it. Sometimes I call it God, sometimes I don't.

-I believe this energy communicates with us from within and from without. I don't think I believe that you need to read 25 volumes of religious texts to know about it or understand it.

-I think that without this energy, we've not much to go on but ego, and that gets us in trouble.

-We need some amount of ego to survive in this world. I suspect how we listen to ego determines a lot. One can't believe everything ego thinks.

-I don't trust religion. I do trust God. The trick for me is clearly hearing that voice.

-We're here to realize ourselves, to love love ("God") and to love each other.

-I like comedy that isn't about generalizations, sexism, racism or most other isms. Self-awareness and inquiry is probably one of the funniest platforms to speak from.

 -Women have been sold an enormous crock of BS, and we tend to believe it, even as we recognize it.

- Men have also been sold an enormous crock of BS. They don't always recognize it.

-I'm not going along with it anymore. I didn't for many years. But the last 10 years. I've faltered.

-I don't believe in Republicans, Democrats or Libertarians.

-I want to be a loving person, but not one that can't stand up for anything. I've let myself get discouraged.

-I love some people who attend the church I've been going to for 10 years. And, I don't think I'm living from integrity anymore. I want that back.

-Getting older has been messing with my sense of self. I need to reclaim that.

I'm taking back my agency and I'm diving back into to the pool. I don't understand many, if not most, things about this world, but watching from the sidelines isn't cutting it for me. At one time, I felt I knew who I was. And I liked me. I haven't felt that way in several years and the only one who can change that is me. So here I go.



Friday, April 05, 2013

Roger Ebert

It's hard for me to write these days. I'm not entirely sure why.  I used to write for the sheer relief and joy it brought me.  Now, I stare at a blank page for much longer than is comfortable when I need to even send an email.  Sometimes I think the post-traumatic stress I experienced, and still experience, from when my son was in the hospital has fundamentally changed me, and not for the better. It seems to have a lasting impact on my ability to express myself -- or perhaps even to feel joy. My mind tells me it's too dangerous. 
 
One person who helped teach me about the joy in writing was Roger Ebert.  He died yesterday, and I am quite sad. Ebert showed me a lot of things - I learned so much from him, and a surprisingly small percentage of it about film.  A huge part of the beauty of his written film reviews, for me, was his fascination and comprehension of human nature, and his thoughtfulness about the human condition.
 
I used to sometimes watch Siskel & Ebert growing up, and I think that's how I first encountered Roger. I enjoyed it.  They were entertaining.  I didn't think much about who Roger was as a person. I could see he had a great sense of humor. I liked him. He was overweight, which I also liked. In my earlier days, I was fond of people who could be overweight or disabled or whatever and risk going out in public.  In my own mind, if I was fat, I shouldn't be seen in public. And I was rather significantly overweight in my early 20's. I was not significantly overweight at other times, yet still thought of myself as fat and therefore of less value.  (I still think like this, but at least now I'm conscious of it and don't have to believe what I think.)
 
In 1990, I moved from New Jersey to Boulder, Colorado.  I fell in love with Boulder. I'm still in love with Boulder. I was fortunate enough to get hired into a position at the University of Colorado at Boulder (known, to my own consternation, as "CU").  Every year, CU would host the Confernce on World Affairs (CWA).  The CWA was, and is, a unique conference that everyone is invited to at no charge.  All those who participate, whether presenters or audience, pay their own way, find their own housing, etc.  And year after year, people come.
 
Roger Ebert was one of them.  For 25 years, he came and did what he called 'Cinema Interruptus'.  He would pick a film.  The film would be showed on the first night of the conference, with no interruptions.  The next 4 nights, everyone would gather and watch the film interruptus-style.  Anyone could yell out "STOP!", and ask a question or make a comment.  Roger would answer or comment as he saw fit. The first time I went, I hardly knew what to expect. It was my husband ozzie's idea to go. I loved the experience, and came back as many years as I could. I considered it one of the many incredibly positive side effects of living in Boulder. While it was certainly about the film, for me it was really all about Ebert - in the best possible way.
 
What one learned about Roger at Cinema Interruptus was quite a bit. He's thoughtful, intelligent, funny.  He's good company.  Beneath that was compassion, love and an incredible humanity. Roger could see the wholeness of humans, from best to worst, and he could articulate his thoughts so well. 
 
There were comedic downsides. There was the guy who always sat in about the 10th row on the far right side.  "Roger?!", he'd yell out when he had a comment. He was frequently looking for approval and validation.  One of the surprising things about Ebert was how great a crowd-handler he was.  He could usually find the right way to keep things moving and yet still be kind. Interruptus could have been downright maddening if the right person hadn't led it. Like talk radio without Neil Conan. The cast of audience characters was remarkably static year after year.  Even the most annoying commenters I began to think fondly of over time. And I was one of them.  One year, Ebert mentioned, as he occasionally did, that he had chosen to 'not necessarily believe in God'. I don't remember if he used the word atheist. I asked him, in front of everyone, why he had chosen that?  Some people booed - they thought I was some God-loving religious type trying to castigate him. In fact, it was a simple, authentic question, because I love hearing about how people experience the world, spiritually. He later wrote an essay with a beautiful answer to that question (I don't mean to say that he wrote it because I asked it.)  Also, it was good to know I could survive getting booed by a few people.
 
At some point, Roger was diagnosed with cancer of the thyroid and the salivary glands. He lost a lot of weight because of it.  He went through devastating treatments and surgeries. He eventually lost his ability to both eat and to speak. Perhaps two of the things he loved most.  But he could still write - and thankfully so. He took to blogging and tweeting and had many strong opinions that he seemed to relish expressing.  And I relished reading them. I missed his "audible" personality at the CWA.  For a couple of years, he kept coming and would type his comments, using a computer voice to read them. After a few more surgeries, he came for one last year. His face was disfigured; his spirit was anything but. I turned to my good friend Paul and said "I guess when you really love somebody, it doesn't matter what they look like."  I was reminded of my grandfather, who had a stroke at about age 60. It didn't matter to me that half of his face was kind of frozen or that he couldn't speak very well. I loved him no matter what. When I looked at Roger, I didn't see his physical appearance as much as I saw him. And I loved him, too.
 
The last year he was there, Paul and I were sitting down in the front when Roger and his wife Chaz walked by on their way to the front of the room. We both smiled, with much love, and said hi to him. He smiled back. At that time, his face kind of always looked like he was smiling.  But you could tell, somehow from his energy, when he really was. 
 
The CWA now calls the session "Ebert Interruptus", and other film critics now host it.  I doubt I will go again. As Ebert used to say, doing the week-long session was self-indulgent.  But doing it with him was far beyond that.  It was full of elevation, inspiration, awareness and love. I'm a lucky girl to have been in that room.

 
"Success is not final, failure is not fatal: it is the courage to continue that counts."

~
Winston Churchill

Saturday, March 23, 2013

"When the present is unbearable and there is no future, the past comes rushing back." 




"Success is not final, failure is not fatal: it is the courage to continue that counts."

~
Winston Churchill

Tuesday, January 22, 2013

Made me laugh

"I've demonstrated an impressive resilience in the face of valuable life lessons, and the main thing I seem to have learned from this one is that I am capable of learning nothing from almost any experience."  -Tim Kreider

Sunday, January 20, 2013

a response to David Sirota's Salon article "Ayn Rand is for Children"


Sorry, I really didn't like this column.  It's a lot like the very thing it is complaining about.

I read Rand in college like a good girl. It had huge impact on me, but not in the way David Sirota is assuming.  I embraced some of Rand's ideas, but rejected plenty of others.  I felt she confused the attributes of bureaucracy with "the state".  The state is not the only bureaucracy.  Her complaint is that excellence can get squashed by bureaucracy.  But her mistake, according to me, is being so black and white.  You can have excellence while working for a government funded organization.  Just like you can have incompetence in a privately funded organization.  I feel that David's response is equally black and white, assumes the worst about people, and equally a problem.

I am very much in favor of libertarian values when it comes to the "social" issues.  Some things just don't need to be legislated.  But some other things clearly, to me, do.  I vote Democratic 99.9% of the time.  And I think Ayn Rand valued excellence and didn't like seeing it tarnished.  I can understand that.  But to me, it seems a consequence of being human, not really about government per se. 

I'm posting this because Salon won't let me post comments unless I pay them. (And yes, I did login using Google, which is supposed to satisfy them but doesn't.)


Friday, September 14, 2012

Middle Age Crazy

I found a post I wrote last year but never published.  I'm publishing it, below, because I like having a record of what was happening when.
 
Reading this, I could see that we have made progress in the last year.
 
-D graduated from Boulder High, had a job this summer, and is planning on going to Fort Lewis College in Durango in January. That feels huge.
-I started Gilenya, a drug which has rather unexpectedly really improved some of my MS symptoms.  I'm also taking some supplements specifically for energy and overall I am doing a little better.
-A is attending school in the morning and doing online school at other times.  The jury is still out, but it has a possibility of working and getting him caught up to where he needs to be.  He
     successfully completed the WINSi program.  It was a bit disappointing, in that we didn't feel it lived up to the cost, in terms of the psychological help he needed.  But there were some good
     things that came out of doing it.
-O is working and even though it isn't the job he wanted, I think it's good.  And there is still the possibility that he can get something more along the lines of what he wants.
 
Overall, Adrian's anxiety has been better.  Actually going to school is still a problem.  The idea of going to school works for him, but in practice he has a very hard time getting there. We met with the online school guy at the school district today.  That went pretty well.  I'm still concerned it will be too many hours for him to handle but he's getting the chance to try it out.  It would be great if it can work.
 
Yesterday I had an appointment with Joe Cohen, who was the ob/gyn who helped deliver Adrian.  He was very good.  He is now in the 9-to-5 MMJ and wellness business.  I went to get my card renewed.  I primarily use it to help me sleep and it works very well.  What we talked about for most of the appointment was MS, autoimmune problems, and his take that the hybrid wheat that is grown in the US is the cause of gluten sensitivity, which leads to the autoimmune issues, which ends up getting diagnosed as MS, Crohn's, Lyme, CFS, Fibro, etc.  He said that it would be wise to help my kids understand that going gluten-free would be a smart move, since this stuff runs in the family. "Make your household gluten-free", he said.  I made myself gluten-free four years ago or something, but I didn't get rid of all of it. 
 
For various reasons, the discussion had a big impact on me. It fits with so much of what I've learned over years and years of life.  I told him that I feel at my best when I don't eat anything or at least very much.  He said that totally makes sense to him - when you start going down the path, your body reacts to more and more things that are taken in to it.  Now, I've done a pretty good job managing it to some degree.  I am going to do a little more research on what I can tweak to help my digestive system strengthen itself. 
 
I think the thing that hit me hard was understanding that I never stood a chance with the Standard American Diet.  I intuitively suspected that from the time I was still a teenager, but I didn't have the skills to really implement what I needed to do.  So I could do it for, say, six months at a time, but then would have another six months of screwing up.  I kind of suspect that the series of six month periods that I DID avoid the problem foods might have helped me stay as functional as I am.  I was already bubbling about some of this stuff for Adrian after reading this article in the New York Times about inflammation and autism, and how the problems can start in the womb. Shit, no wonder Adrian has been sick for much of his life. D has done better; I suspect the four year difference meant my body was a lot worse off by the time I was carrying Adrian. 
 
Luckily for me, I like having a mission. :-)
 
 
 
___________________________________________________________
 
Written around 12/1/2011
 
Sometimes I just feel like writing, though I'm not sure what I want to be writing about.  I think it's usually when there is some vague, dissatified or fearful emotion inside me, politiely asking to be expressed.  I ignore it and hope that it will go away.  Which is a great way to set up a huge overreaction a week later.  So writing is a good way for me to express those kinds of things.
 
I'm worried about Adrian's weight.  I need to weigh him, and I'm pretty sure he needs to eat more calories, which he won't want to.  I really don't want to have conflict over it, but it is inevitable.
 
I'm very worried about Adrian and WInsi.  I just think it is going to be hell getting him there everyday.  But that's what it is all about.  Again, I don't want to have conflict over it.  To some degree, it seems that life IS conflict.  Being conflict-averse is pretty dysfunctional, but then thriving on conflict is also dysfunctional. 
 
I feel like I need to spend a few days in my house, getting it straightened out.  It would make me feel better.  I really wish Adrian and Ozzie weren 't going to Aspen.  I think I need to go over to Nina's tonight. 
 
I also need some face time with Ozzie, without kids.  Again, I don't want there to be conflict, but I need him to step up more.  He's talking about going to Hawaii but doing it in a kind of underhanded way, which I don't like.  The Abilify did not kick up my sex drive this time around, so I feel I am failing him there. 
 
I suspect a midlife crisis is brought on by unrealistic expectations earlier in life.  The non-celebrity, non-wealthy woman is going to have to accept losing her youth, whatever looks she had and deal with it.  It's harsh, but that is mostly because you (I) probably relied too much on needing to look good to feel ok.  Then there's the question - what does it mean to be a near-menopausal woman?  Does it mean I won't be attractive to my husband anymore?  To myself?  Will my marriage fall apart?  Will my family fall apart? 
 
I think coffee is making my stomach hurt again.
 
I was looking out the window and saw two little children playing out in front of Regent Hall.  They might have been 3 or 4 years old.  I smiled because I was thinking of Dagny when she was little, and how different it is now.  All of a sudden, the song 'Sunrise, Sunset' pops into my head and I actually start quivering with emotion.  I'm not exactly happy with how things are and I am going to have to figure out what needs to change.  Or what I can change.  Order in the house feels like #1.  Some kind of weekly dinner feels like another thing.  Start taking peppermint gels again.  Maybe we have a family dessert, to encourage consumption on Adrian's part?  Oh great, now I am hatching a plan that involves me eating more so Adrian will eat more.  It might be a decent plan, though..
 
Something about me is that I do really honor the career I've had.  I'm not quite ready to be done, though.  What I'm doing for FA now is not interesting and sometimes tedious, but for this period of time that Adrian is hopefully getting resettled, I guess it is where I'm at.  But right now, I am at a bad point in my family life.  I'm just not sure we've done the best we could. I was surprised when Maurice Sendak said he would never have had kids, as they were far too much work.  You can do that?, I thought.
 
But another thought I had today was about thinking more compassionately.  About myself and my family.  Was I a careless parent for taking Adrian out of school?  Well, the kid was starving, sick and in misery.  He needed help, and I was trying to give it to him.  What I learned from the WINSi evaluation is that he probably never stood a chance anyway, with his anxiety problems.  I am afraid of not having the energy I am going to need to be successful with WINSi.  But I've got to. 
 
My idea about changing working to 3 hours a day is very appealing.  How could I supplement the 4 or 5 hundred dollars a month difference?
 
 
 
 

 

Thursday, August 23, 2012

What I found ignorant about Rep. Todd Akin's remarks about rape has nothing to do with the word "legitimate".

His "theory" suggests that if a woman's body is not prepared for intercourse because she "really" doesn't want the penetration, then it's very hard for the body to get pregnant. But if her body reacts to the rape and tries to accommodate it ('the juices are flowing'), then it's clearly not rape because her body "really" wants it.

Ask any man with erectile dysfunction how much control he had over it before we created the magic blue pill? How many women can magically turn arousal on or off? Mr. Akin - read up. Much of the body reacts involuntarily to arousal. In other words, you don't have to want your body to be aroused for it to happen. Or you may really want your body to be aroused but you can't make it happen.

Your theory is severely flawed.

Remember Serbia, Croatia, ethnic cleansing, raping women so they will become pregnant and bear "half-breed" children? Is Mr. Akin saying 30,000 - 50,000 Croat and Muslim women are lying?

A mind is a terrible thing to waste, and the Republican party is starting to act like they have no use for them.

ps. I'm glad Akin is staying on the ballot. The Republican party knew full well who they were running for the Senate in Missouri before three days ago. Plus, I think he represents his party pretty well. So why not vote for the reality. Prefer ignorance? Vote Akin!

Sunday, December 04, 2011

Nick Kristof is who I was supposed to be


Growing up, I thought I was going to be more like Nicholas Kristof.  I started out well - was an overnight volunteer every week at a homeless shelter; joined the VISTA program in the US for two years; set off to study sociology and change the world.  I don't think I changed the world as much as the world changed me.    (I don't know if that is true, but it is a pretty good line.)  I have great admiration for Kristof.  He's watching out for the truly needy - and he appears to really live it.  So here's his list of gift ideas that help someone in need of something.  


Gifts That Say You Care




GIVE Grandma a bit of credit! These holidays, would she rather receive a silly reindeer sweater or help a schoolchild acquire glasses to see the blackboard clearly for the first time?
Choosing the perfect holiday gift is one of life’s greater challenges, modestly more difficult than earning a Ph.D. in astrophysics. So it is time for my annual gift guide.
For starters, the Web sites of the major humanitarian organizations offer alluring holiday gifts. Through the International Rescue Committee, $30 buys a flock of chickens for a needy family. At CARE, $29 gets a girl a school uniform. Through Heifer International, you can stock a fish pond for $300. With Mercy Corps, $69 can start a female entrepreneur in the sewing business.
Beyond those organizations, here are some lesser-known charities that may help put a grin on Grandma — and on someone else.
Helen Keller International fights blindness and malnutrition around the world with simple and cost-effective programs. One of the best ways to improve children’s health is to focus on micronutrients, like iodine, vitamin A and zinc — and in some cases to fortify foods with nutrients at a negligible cost. Helen Keller International, athki.org, is a leader in that effort, and gets more bang for the buck than almost any group I can think of.
And those glasses I mentioned for a schoolchild? That’s a Helen Keller International program, ChildSight, which operates in the United States as well as in Indonesia and Vietnam. Schoolchildren are screened for vision problems, and those who need glasses get them. Providing glasses costs just $25 per child — which is a much better value than a sweater that will sit in a drawer for eternity.
Against Malaria has a simple model: $5 will buy a bed net that protects several people from mosquitoes that carry malaria. All the money that is donated goes to buy nets, and Against Malaria, at againstmalaria.com, gets a No. 1 rating and a rave review from GiveWell, which rates charities.
In a malarial area in Cambodia many years ago, I met a grandmother who was looking after several small children after their mother died of malaria. The family had one bed net, and every night the grandmother had to decide which children would sleep under it — and which one she would leave outside.
For the price of a stocking stuffer, you can spare a mother or grandmother that wrenching choice — and potentially save a life.
Reading Is Fundamental is an American program that promotes literacy in high-poverty communities in America. Its government financing has been slashed in the tight budget environment, so it needs support.
The group is a public-private partnership with 400,000 volunteers, bringing huge efficiencies. It provides new, free books to four million children across the United States, and encourages the kids to read. Information is at rif.org.
The Citizens Foundation was started by Pakistani businessmen concerned about their country, and it builds terrific schools for needy children there. We’re seeing American-Pakistani relations spiral downward, and billions of dollars in American military aid to Pakistan haven’t accomplished much. The best way I can see to moderate Pakistan and defeat extremists is to bolster secular education.
When I travel in Pakistan, I see radical madrasas built by Wahhabi Muslim fundamentalists from Saudi Arabia and other countries, offering free meals to entice students. Fundamentalists donate because they understand the power of education to change a country. And we don’t even compete. Information is at thecitizensfoundation.org.
GEMS is a New York-based organization supporting American girls who have been trafficked, prostituted or otherwise sexually abused. It provides shelter and education for those rescued from pimps and provides some of the first nurturing many have received.
GEMS stands for Girls Educational and Mentoring Services. It was founded by Rachel Lloyd, herself a survivor of the streets who went on to earn degrees from Marymount Manhattan College and City College of New York and wrote a searing memoir, “Girls Like Us.”
Prostitution of children should be a stain on the national conscience, and GEMS helps survivors while using peer counseling to prevent the trafficking in the first place. It is at gems-girls.org.

And here’s a special holiday message you can pass on to university students: tell them that I’m announcing my annual win-a-trip contest. In 2012, for the sixth time, I will take a student with me on a reporting trip to the developing world to try to shine a light on neglected issues. These trips have been life-changing for past winners. Information about how to apply is on my blog, nytimes.com/ontheground, and thanks in advance to the Center for Global Development for again helping narrow the applicant pool down to finalists.


Thursday, September 29, 2011

Reasons to be Cheerful, Pt. 49

Or, this is me recovering from the last year.

I'm worried about myself.  I'm watching the pilot episode of the show "Louis".  It's not making me laugh. Man, I wanted it to.  It's like an odd combination of a Seinfeld, Curb Your Enthusiasm, and Ferris Bueller's Day Off.  Except that it's not making me laugh.  It literally lifts jokes from those shows, just not very well.   Ok, this bit about everything in life not ending well is kind of funny.  "Hey everybody, I just brought home a puppy - we're all going to cry soon!  I brought home us crying in a few years.  Here we go, countdown to sorrow with a puppy!"  Maybe it'll grow on me.

I need to find something funny.  Maybe I won't find anything funny.

The last year of life has me in a post-traumatic-stress-syndrome funk #49.  It's been going on since at least about May or June, when my son got out of the hospital.

But it's easy to forget that there are things to be grateful for.

-My son bought a cookie and a brownie at a bake sale today.  That means he has the intention of eating them, although he hasn't yet.  But there was a time that wouldn't have happened.

Now this show is grossing me out.  Had to turn it off.

-This has been a good week for him, so far.  Which means I've also had a better week.  This is the first week I've noticed my anxiety level dropping just a tad.  My body isn't expecting a disaster every other minute.

-If I had some money, I could pay someone to come in and help me really give a few rooms in my house a good cleaning.  Why don't I do that?  Give my house a good cleaning, that is.  I'm not that guy.    I thought maybe I could be that guy, bought a book about it, but haven't read it yet.  Maybe what's true is, I'm not that guy right now.  Wait, I was going to write about things to be grateful for, not pick on my faults.  I'm grateful that we have a house to clean.

Many things are bothering me and one of them is that I haven't been writing.  If I was, maybe I'd be dealing with things a bit better.  I think there is something about the process of writing that exorcises the voices in my head.  I could use some of that.  So here goes.

I have been contracting.  I have been withdrawing from life, from relationships, and letting my fear and my current lack of resilience rule things.  In the past, I would experience this for a while but pull myself up and out and get on with it.  I haven't yet done that this time.  I do what I have to but nothing more.  I'm in too deep. A recent bout of infections has caused MS to flare-up.  Not surprisingly, that is not helping anything.  I literally don't think clearly when this happens, and there's not much to do but wait it out.

I think something has changed for me relative to anxiety and to worry.  I used to be able to quell a lot of it by telling myself vaguely 'oh, don't worry, things are going to work out'.  Since my son's rather difficult year, that doesn't work anymore.  Because things don't always work out.  Sometimes they turn into a scary, hellish experience that rips all traces of confidence and faith out from under you.

And I just don't know how to get them back.

I miss it.  I miss the days when I trusted myself, and had faith in myself.

A friend sent me a link to a Salon article about Jeff Tweedy.  I had watched the Wilco PR machine churning for the past few weeks.  Their new album came out on Tuesday, and it is the first one they've produced on their own label.  So it's a big deal for them, and they've been everywhere publicizing it.  I haven't listened to a single song yet.  I did read the Salon article.  Which lead me to read many other Salon articles.  I had never spent much time there.  I landed on a column called "Since You Asked".   Someone writes in with a problem.  The columnist answers, and then all the Salon commenters have their say.  You'd have to be pretty gutsy to send a letter in.  The commenters are a mixture of supportive, nurturing, critical, and downright nasty.  After reading a few letters from people who had the nerve to send them in, I thought about myself sending one in.  Oh, the field day the commenters would have with me.  "Stop thinking about yourself!"  "You don't have it as bad as the rest of us!"  "Be thankful for what you have".   Ok, ok, ok, I know.  I have no right to complain.

But there is one errant commenter, in my mind, whose voice quietly persists.

"Give yourself a break for a while.  You've been fighting a battle for your son for some time, and it has not been easy.  Of course you are letting your relationships slide.  You can't stand being such a downer and you shut things down before you get dropped or rejected.  It kinda makes sense. You haven't been at your best.  You've let your resilience sink underground.  The good news is, you can retrieve it.  It happens little by little, bit by bit.  You find something good to do for yourself one day, and keep it up through the next day.  That's the kind of success you can shoot for now.  This is rebuilding - what is that Paramore song?  Brick by boring brick.  Pick yourself back up, and pick up the next brick.  You don't have to criticize yourself for not building it faster.  Each brick counts, and each brick stays."  Ba da ba da ba da ba da.

The next brick.  The next dirty dish.  The next meal.  The next drive into work.  The next consultation with a dr.

I remembered today how when I used to go through a bad time as a teenager or young adult, I just clung to music.  Music would get me through.  It's white-knuckling it -- holding on to whatever grounds you so tight your knuckles turn white.  I wonder if music can work for me now.  Do I still believe?  Neil Young does.   I think maybe Eddie Vedder still does.  "We all walk the long road".   I used to lean on the music and let it hold me up.

It's been a long time since I've felt such terror about life.  I can see the reasons for it - losing my former identity from my career, seeing my husband getting laid off, watching things going off the rails with my son, feeling my withering connection with my daughter, starting a new MS drug, being afraid of getting older.  For some reason, it surprises me that life requires more courage the older I get.  And that I seem to have less of it.

Brick by boring brick.  Yes, finding the things to be grateful for is good, but maybe actively building those things into a strong foundation is even better.  I don't know that I can trust it, yet.  I guess picking up that first brick, and the one after that is an act of faith.  Acting as if.  I've done it before.





Friday, July 29, 2011

Lions and Tigers and Bears

When I was in the hospital with Adrian, I spent many hours at night, while he slept, researching everything I could. I couldn’t really accept their diagnosis of anorexia. He had never wanted to lose weight. I read about OCD, eating disorders, schizophrenia. I even read about something called PANDAS. When I first heard it referred to, I thought “this has to be him”. PANDAS - ‘pediatric autoimmune of neuropsychiatric disorders associated with streptococcal infections”, in other words, OCD that develops from the strep bacteria. His problems that landed him in the hospital had started when he’d had his tonsils out in mid-November. He’d always had OCD-like tendencies, and had temper tantrum-like mood swings that we referred to as ‘meltdowns’. Some times were better than others, I was never sure what all the variables were, exactly. The meltdowns seemed to relate to his expectations and his perceived performance. But he'd gone off the deep end after the tonsillectomy. And the whole reason for the tonsillectomy was chronic strep.

But the more I read about PANDAS, the more I wondered. I read that its hallmark was a sudden onset. As in, one day your kid was fine, and the next he was a completely different child. Adrian had always shown these tendencies. So I wasn't sure it fit. At this point in my relationship with Children’s Hospital, I didn’t think bringing it up was smart. I didn't think he completely fit the traditional profile. I had already fought them on the anorexia thing, and I was being told that all his brain issues would clear up once he got back to his target weight. About which I was skeptical. But I didn’t want to risk being accused of interfering with his care, as they had already unnecessarily done with Ozzie. I couldn’t risk Adrian not having either one of us there.
About 6 weeks after we’d finished up at the hospital, I wrote a painful blog post on where things were with Adrian. Things were bad. I mean, his weight was back to normal. But his mind wasn’t. The kid was being tortured by his brain and I was tortured watching it happen. A long-time friend, Jay, happened to read my post. He sent me an email saying he’d talked to a psychologist friend of his about what I’d written about Adrian. She’d mentioned PANDAS to him, which he then mentioned to me. He said he thought I may already had considered it, but wanted to mention it anyway.

I started writing back to him, to say that yeah, I had considered it. As I was writing, though, I starting thinking about Adrian a little bit more, outside of the damn eating disorder lens. The kid had had strep about 10 or 12 times in his life. He’d had his tonsils removed because of chronic strep. After the surgery, the surgeon told me his tonsils were ‘dripping with bacteria’. His meltdowns had begun sometime around kindergarten or first grade, which was also around the time he’d started getting strep. And his behavior had radically changed after his tonsillectomy. Oh my gosh - I literally interrupted my narrative to Jay and said “I will have to write back later - I have got to find someone I can talk to about this”. Jay had mentioned that he wished he could do something to help. I told him he may well have done something downright amazing just by making me consider PANDAS again.

I started researching PANDAS and doctors. I found stories that were more similar to Adrian. I read that PANDAS can cause something that looks like anorexia. (!) And of course, PANDAS is controversial. A bacteria causing a brain disorder/mental illness? It took western medicine far too long to accept that a virus could cause an ulcer, this was no doubt going to be a hurdle for them. As if finding treatment for eating disorders wasn’t hard enough, this was going to be harder. For the first day or two, I couldn’t find anyone in Colorado who was considered “PANDAS friendly”. I was starting to think I’d need to take him to New Jersey - there was a doctor there who had treated a number of PANDAS kids. I stumbled upon a book called “Saving Sammy”, written by a mom who’s 12 year old son had turned out to have PANDAS. I ordered the book. I continued my research, and did find one doctor whose name was mentioned as possibly being open to PANDAS - he was in Boulder. Dr. Voeller was associated with an Institute for pediatric neurodevelopment illnesses, called “WINSi”. I noticed the address of the institute was same building as my own long-time doctor, Richard Suddath. I looked up Dr. Voeller in our insurance companies directory but no luck.

So I started thinking of other ways that could be more cost-effective. I settled on going to our family medicine practice and seeing what they knew about PANDAS. I can't say I had high hopes, as I'd never been all that impressed with the practice. But I had to go anyway to get Adrian’s prescriptions transferred from the doctors at Childrens, so I made an appointment for Thursday. I was leaving on Saturday for a business trip to Portland and it would feel good to get this all moving forward.

Thursday morning, “Saving Sammy” arrived from Amazon. i was on my way out the door and threw it in the car, thinking maybe I’d show it to Dr. G., who I had my appointment scheduled with. I wasn’t sure how easy it was going to be to have them assume the prescriptions, since they were all psychiatric meds, so I was a little nervous. Adrian was at band camp, so I had some time for lunch before my appointment.

I got into the office at about 3:00. Dr. Granston was running late. So I waited around and started reading ‘Saving Sammy’. I could not get through more than a few pages without tearing up. I felt like I was reading my own child’s story. it was shocking how much Sammy and Adrian had in common. Not everything - there were some major differences, too. But there was enough there that I just couldn’t help but start believing that yes, “this is something”.

Dr. G. clearly had ten-thousand things on his mind when he came in, and he was in a hurry. He took a look at Adrian’s notes online, wincing a bit. The records from Children’s had made it into his file. Those records would make anyone wince. He asked me some questions, and I told him some of the gory details about our experience. He had no problem taking on the prescriptions and gave me 5 refills for each one. I felt a little stress go out of my body. So I took a deep breath, grabbed my ‘Sammy’ book, and dared to ask him about PANDAS. Had he heard of it?

Crickets.



In his defense, he wanted to help me. He saw that this had been a nightmare, and he’d shared some personal things with me about his sister and his mom. But he wasn’t the guy. He didn’t know about PANDAS, let alone believe it could happen. I hadn’t really expected anything, though I was glad to have the prescriptions. 

I went out to my car.

Having had much of the day on my own, I was in my favorite ‘go with the flow’ space. A recent book I’d read called it ‘float more, steer less’. As I got in the car, I thought, ‘I’m going to float’. What that means to me is, I will let my intuition choose my next move. With Adrian still at camp, I had time. So I drove over to the building my psychiatrist worked in, and walked onto the first floor, where Dr. Voeller’s office was. I found a door to the suite for “WINSi”. WINSi is an acronym for ‘Western Institute for Neurodevelopmental Studies and Interventions’. I walked in.

There were a series of offices - occupational therapists, speech therapists, psychologists, neurologists. It felt encouraging, but there was no reception type area that I could see. I thought, “oh, maybe I just have to call them”. I sat down in the lobby to consider. Then thought, “no, I’m here, I am going to find out what I need to know”. So I walked through the section of offices and asked one of the therapists about who I could talk to. She directed me over to Josh, who was in the main office for WINSi. I smiled at Josh, took a deep breath and hoped for the best. I told him that I had a 12 year old son, who had some brain functioning problems and I was looking for help with him.

He gave me an overview of what they do. They run an intensive evaluation and treatment program for children with dyslexia, ADHD, Asperger’s, anxiety disorders and other neurological problems. I said ‘my son is dyslexic, and he has a huge anxiety disorder - I’ve been told it is OCD”. He said, “well, we find that kids with anxiety tend to process it in ways that look like OCD, but aren’t true OCD.” That sounded very true to me. I said “do you guys know anything about something called PANDAS?” Josh said, “oh yes, Dr. Voeller, our neurologist on staff, she is one of the leading experts on PANDAS in the western US."

That’s when I burst into tears. Not because I had assumed she was a man, but because I had landed in heaven. Here's a neurologist who specializes in dyslexic kids and knows about dyslexia, anxiety, OCD, speech problems and PANDAS. In other words, "Adrian".



I said “I need my son to see Dr. Voeller”.



He told me she was very hard to get in to see. He took my information and told me he’d try and get me scheduled.

Two days later, I left for Portland, OR, for a software conference for work. It was a bit of a risk for me to go - I wasn’t sure that Adrian was going to handle things ok. But another part of me thought we could both use a bit of a break from each other. So I ended up going. The first few days were rough - he was calling me every couple of hours - he was having a lot of trouble with his mind. I talked with Ozzie and he suggested that I only talk with Adrian once or twice a day and let Adrian figure out how to get by without me.

I was in Portland for 4 nights. On the third night, I got a call from Dr. Voeller. She was working late at her office - around 9:30 pm Colorado time. I told her Adrian's basic story, she asked me some questions and she said that Adrian sounds like a very possible/probable PANDA syndrome kid. I cried, of course. She said that the tonsil surgery could very likely have stirred things up. Her 'institute' does a 10-week day treatment program, from 9:00 - 2:00, m - f. The kids do one-on-one work with various kinds of therapists and specialists. It must cost a fortune. They gear each kids program specifically for them - if they need to learn how to deal with their disordered mind, or speech therapy, etc. that’s what they do.

I have to work out the insurance and financial stuff somehow. They aren’t fully covered by any insurance, but they can qualify for reimbursement as an ‘out of network’ provider. So my task is to figure out which CU insurance will give us the greatest benefit. I'm guessing it'll cost us $20K however we do it. She told me they are very, very booked up so we'll probably have to wait until the October session. I don't care - we have waited this long.

We'll get in to see her before then, and she'll spend some time with him. She said she’d want to tweak his medications a bit, and he’ll probably do a long course of antibiotics. I kept telling her little things about our experience and she'd say "yeah, that is not uncommon. most hospitals really don't know how to diagnose these things correctly', etc. She was very reassuring, and felt that they could really help Adrian.

I can't help but feel like angels are watching out for Adrian, somehow. Because my goodness, if the universe is going to let young kids become mentally ill, then I think the angels have their work cut out for them. I rarely say something is "not fair", but after everything I saw at Denver Children's, I'm willing to say it now.

If I can get him in to Dr. Voeller's progam, then that is going to be 'school', for now. After that I'll see how he is doing. I'm thinking for the rest of this year (7th grade for him) I'd do part-time home school, part-time some other school. F/T home school just won't work for me. Even Dr. Voeller said she didn't think it (f/t home school) was the best thing for either me or Adrian.

Whether or not Adrian has PANDAS, I feel that we have landed in the right place. I know they are going to be able to help us. That is a good, good feeling.

Thursday, July 14, 2011

Work in Progress [in more ways than one]

I went back to my mother....I said, "I'm crazy ma, help me!" She said, "I know how it feels, son, cause it runs in the family". Can you see the real me, can ya? Can ya?

Writing a blog post feels kind of quaint to me right now. With Facebook, Twitter and G+, what do I need a blog for?

Well, let's take a look at the mediums. Twitter...I'm flat out in it for the comedy. I balance this out with the 10% that I'm in it for the MS community. Which may be even less than 10%, because those of us with MS don't post all that much. We are too busy having MS. (See? Comedy.) So maybe 8% MS community, and the other 2% is information - like certain NPR shows, Roger Ebert, some gluten-free bread company. When I post on Twitter, I am usually imagining myself standing up in front of a fairly small audience, making my dopey little comments on life. It's really fun, and I enjoy reading others. If I follow someone who just becomes totally annoying or depressing, I stop following them, at least for a while.

Facebook - eh. I have a love/hate relationship with it. I love that I can post something there that I think is funny and get almost instant feedback. And I hate that I love that. I find 60% of what gets posted on FB to be annoying. Well, let's say 60% of the posters are annoying. Why I am reading stuff from people I find annoying? Because they are my "friend" and I'm supposed to. I can't play that game anymore. I'm starting over at G+. But I will miss the 40% that I do love.

The attractiveness of Google+, for me, is the circles. And, that there is nobody there! Andy Borowitz has posted a series of snarky G+ comments on Twitter this week.(5) "They're funny because they're true!" A funny thing to me is that Andy is one of the 6 people I have 'circled' on g+. Writing to a nearly empty crowd is somehow really soothing.

I still have a blog because - I like to write, 140 characters doesn't cut it for the stuff I write, and I don't want everybody on FB to comment on it, I don't think. It's hard to want to express but also be so stupidly sensitive to criticism.

And a blog posting is a place where I can sort some stuff out. My thoughts, my fears, whatever it is I need to work out, writing it a good way for me to do it.


And here is something I need to work out. My son was in the hospital for a few months. That, literally, is a book that I am writing. Whether I am the only one who ever knows about it or not, it needs to be written. So it's hard for me to write about my current issue, because the back story is far too unwieldy to tell here.

The fallout from the last nine or ten months of our life is that my son, 12, practices the drums...oh, about 6 hours a day. He also came out of the hospital with a brain disorder that they tell me is OCD, though that description really does not do it justice. The two things (the drumming and the OCD) frequently collide. I'm not really convinced it is OCD. I sometimes think it is bipolar disorder. But for now, we are using the OCD lens.

Since we left the hospital and stopped the day treatment, my life is 80 - 90% him. I work ~15 or 20 hours a week, from home, right now. He is on psychiatric medication that he gets 3x a day. He takes many vitamin and herb supplements three other times a day. He is still on a treatment plan which requires him eating 4 or 5 times a day. So our days tend to be pretty prescribed, and a bit high-maintenance in certain ways.

When I say OCD, you might think - oh, he has a germ phobia or washes his hands too much. Those things are part of OCD, though it turns out that OCD has a wider footprint than I ever knew about. Sometimes OCD can sound rather harmless. But it is, I think, the degree of either the "O" or the "C" that determines how brutal it is. Adrian's version of it is pretty brutal. The "O" in his OCD manifests itself as a 'voice' in his head (he used to call it the 'bad Adrian') telling him he's no good, he can't drum, he'll never be good enough....what I would call a "critical parent"*(0). The critical parent in his head is quite nasty. It can bring him to his knees, literally begging for mercy. The "C" manifests as him saying he'll "never drum again", he "wants to die", he "has to quit". That kind of thing. If left unchecked, it becomes very self-destructive, with him trying to destroy himself. As you might imagine, it is heartbreaking to see a 12 year old boy being tortured like this - and so graphically. His 'voice' tortures him about drumming, and only drumming. I have a theory that it picks on whatever basket you have all your eggs in. How you define your identity, perhaps.

Now, as far as I can tell, we all have mild or faint versions of this ourselves. Many, maybe most of us, eventually learn how to tame those thoughts and our reaction to them. Most of us don't have such a painful degree of it. It has been explained to me that OCD is like a broken 'sorter' in the brain. The OCD person can't distinguish easily which thoughts they should keep and listen to, and which they should just toss out and not try and do anything about.

I'm of the opinion that children shouldn't have to deal with this. Let's leave it to the adults. I want there to be a grace period of about 18 years before any type of mental illness takes up residence. But it 'don't really happen that way at all.....nah nah no. Don't happen that way at all'. (1)

My own stuff started at about 13. I was a walking eating disorder, and four years later, a walking clinically-depressed high school senior. If you are going to suffer from an eating disorder and depression - try not to pick 1973 or before as the beginning of your problem years. Nobody understands it yet! Better to come back 30 years later and try it.

And that's what Adrian did. Sadly, only some understand it now, 30 years later, and even those people don't completely. But we are much better off than we were.

I am tortured by the 'why'? Is it my fault? is it all chemical? genetic? My church would say it is what they call "the hells". The hells are external spirits that attack us via our thoughts, they say. I just can't think of it like that. For me, it is a part of Adrian that is fearful and it deals with the fear by being very, very critical.

The piece I am trying to solve here is my own reaction to Adrian when he is being tortured by his voice. I have to be at the top of my game to deal with it well. He is usually screaming, banging his head against a wall, crying, shouting, saying "I want to die! I want to die!". In a perfect world, one's mom would react to that kind of thing with compassion. "Oh honey, I am so sorry. That must feel terrible. How can I help you?"

But something goes awry for me a lot of the time. I think I understand one part of it, which is the frequency. It happens a lot, and I don't like it. The chronic nature of it makes me walk on eggshells all the time. What is going to set him off this time? I'll never know, and I can't control it. Part of his treatment at the hospital and following was intentionally regaining a fair amount of weight, to get him back to being able to, well, live. He weighs more now than he ever had, and he's grown a bit. I don't think he knows how to manage his body, and he is constantly - and I do mean constantly - bumping his head, bumping his elbow, banging his knee, cutting his ankle. And always with great force. You name it. It is just happening all day, every day. And everything that happens causes a pretty over-the-top reaction in him. Everything is a catastrophe. He bangs his foot and screams like a chainsaw just cut it off. And the screams cause my adrenaline to go through the roof, and I start getting all PTSD on him.(6)

What this has done is worn done my sympathy account. (2) And when I say worn down, I mean, decimated (3). I honestly don't have it. Don't even know where to get it a lot of the time. I'm pretty sure this would suggest that I am not doing something right, taking care of myself - whatever. But right now doesn't feel like it's my time to do so. Writing this is my way of basking in luxury -- and it is a pretty good one.

Another part of it is something in me that reacts to him expressing his angst so publicly, and also reacting to what I think comes across to me as 'weakness'. When I say that, I don't mean it as a conscious judgement. What I think might be close to the truth is that there is a deep part of me who was never allowed to do that!! It was not cool to cry so much, to whine, to struggle to openly. No, what I learned was that you do NOT do that out in the open in your family. You are supposed to hide that ugly stuff. I boy, did I do a good job of it. Until it started leaking out of me in my 20's and 30's.

I hate that part of me. I mean, the part of me that is kind of weak, and that does struggle, and does cry. I've internalized it as not 'being ok'. I'm pretty sure that I need to alter that. I need, actually, to embrace that part of me. It's the only way I'll be able to authentically embrace Adrian when he is in that state.

Don't get me wrong - there are plenty of times when I can rise to the occasion and I truly bring it. I Am There For Him. Big time. I spent 8 weeks in the hospital with him, and never actually lost it in front of anybody until after we were home. Impressive, but perhaps not so smart. I just store it and store it and store it until it has to erupt somehow. But I had to.

It seems that when the shut-down, scared, frustrated child in me meets up with the shut-down, scared , frustrated child in him, well, explosions tend to occur. The positive thing about the chronic-ness, is that I've had a lot of practice and have even learned how to fake it. There are times that I do not have "it" to bring. So I act 'as if', as they used to say in 12-step. I just act like a compassionate mom. Usually, I am radically opposed to being any thing other than authentic, but I've had to let that go, at least for a while. It's weird for me, because what I always used to have was too much compassion. I felt everybody's pain, and quite deeply. To not be able to have it all the time for someone I love so much feels so wrong. Yet, I think it is a signal to me that I am not doing all the gd maintenance on myself that I am supposed to.

Really? That is just hard for me to believe. I keep having to learn this, and I never quite get it right.

I know its true, because when I do process all the bs in my head and my soul and get it out (like, writing about it, let's say), then I can go back to my life and have compassion again. It sounds like a no-brainer, but for me it isn't. I somehow trained myself to do the opposite, and undoing that training is harder than you might think. If I think about it enough, I'd say that I had to train myself to keep it all inside - that was the way of the family I grew up in, like many in my generation. It was my own perception of how to get by and feel safe. It wasn't wrong - it was just my survival mechanism. And now it's not serving me so well. What I learned from my original family was -- you don't express your negative emotions until they explode out of you, uninvited, and cause big conflict. You don't say how you honestly feel because you don't want anyone to have their negative emotions explode all over you. Emotions are dangerous.

Yeah, yeah, ok. How do I teach my kids something I don't do very well? The only way I know how to is to just talk about it. And talk about it from my own experience.

Some of the bs I keep inside of me is what you might call existential rage.(4)
Such as,

"Really, universe? There's another gd spiritual lesson I am supposed to learn on this stupid- ass journey?" Or,
"Seriously, universe? You think making my 12 year son fucking want to die is a good idea?" Or, "Wait, I am supposed to live with all the pain in this world and just go on like it isn't happening?"
Or, "Oh, I see, we don't figure out everything we needed to know in life UNTIL OUR LIFE IS NEARLY OVER? WTF???"

You get the idea.

Not to mention - have I told you my son practices drums SIX HOURS A DAY? He used to practice about 30 minutes a day. No problem! I have a rule that I never tell someone in my house to stop playing a musical instrument. I don't know how to survive this drumming thing anymore. I need a solution. The flip side is, he has become a very, very good drummer and it is his passion in life. I am a classic case of someone who tolerates, tolerates, tolerates and then explodes...whether it is chronic pain, chronic rape, or chronic drumming. At least now I am aware of it.

I need to keep working on his. I think I'm getting to the thing I was trying to figure out. I am going to make an genuine effort to fill myself up with nurturing 'stuff' in an effort to keep my sympathy and compassion accounts filled up. It's not easy living with Adrian right now. It's like I had another baby, only this baby is 12, and is a bit mentally ill right now. And I haven't even mentioned his GI problems.... :-)

I get myself into trouble by thinking "hey, it's not supposed to be like this." Actually, I don't think that is true, even though I frequently think it. It's a fairy tale that we bought into that tells us that we aren't supposed to have pain. Life is suffering, sometimes, and there doesn't seem to be any way around that. Buddhism would tell me to let go of my attachments and I'll reduce my suffering. And, it's true. I believe my problem attachment at the moment is to the idea that my son shouldn't have to be dealing with this. And possibly also that I shouldn't have to be dealing with this. Gotta get over that.

Notes

(0) Parenting is a continuum from Critical parent ----> Nurturing parent. How I learned about this was from a guy I met in a bar, in Baltimore, I believe it was. Eric, his name was. He was in the middle of a lawsuit against Priceline.

(1) Lyric from Pete Townshend's "Naked Eye". Great song.

(2) See my old friend, sociologist Candace Clark's work on sympathy. She published a book about here.

(3) Yeah, I know the "real" definition of 'decimate'. However, there are at least two other definitions now that are accepted, and I prefer to use them. I'm only partially a word snob.

(4) At first, I thought I made this term up. I am all about existential rage. But then I googled it, and it turns, no, of course I didn't make it up. I ran across this line: “I'd like to express my existential rage through interpretive dance.” I guess my own existential rage gets expressed by getting angry at my family and random drivers :-) I might consider interpretive dance, though.


(5) Samples:

Google+ is like the random high school party you show up to and no one you know is there.

Google thinks that Facebook is Coke and Google+ is Pepsi, but it's actually RC Cola.

For those of you who have a hard time conceptualizing what a black hole is, log on to Google+

By the year 2050, there will be more social networks than people.

Google+ totally stole the idea of circles from Dante.

(6) Post-traumatic stress disorder. In which, I overreact to any noise, or event. I am unable to relax. I am just waiting for the news that something terrible has happened. I panic when the phone rings. I jump on all fours like a cat at any unexpected sound. I'm going to have to believe that it is a rational response to what happened to him over the last six to nine months, and give myself (and him) a year or so of recovery time.

Tuesday, July 05, 2011

Not guilty does not mean innocent

I'll be the first to admit that I'm feeling ornery due to some medication I'm own, so...you know. But now I will alienate everyone by saying: unless you were a part of the jury, you don't get to be so sure that they were wrong with their verdict. Those 12 people have to live with their decision. I would say that maybe they could not live with giving someone the possibility of the death penalty when there was any doubt about what happened. Be pissed at the prosecution, not the jury. I wasn't surprised by the verdict - there was no cause of death established, and no actual evidence to link Casey Anthony to her daughter's death, other than Casey Anthony being a very unlikeable, unstable and dishonest person.

Our justice system is meant to err on the side of the innocent, and that means that some guilty people will go free. What's worse to me is sending an innocent person to jail. I suspect Casey Anthony will implode on her own, in some way, at some point.

Thursday, April 21, 2011

Groundhog Day




Adrian has had several really good days. He is slowly gaining weight - about 2 lbs so far, which is ~10% of the way towards where he needs to go. His heart rate is responding positively - several nights in the mid-40's. When we got here his nighttime rate was 28-29. He'd probably be 4 or 5 lbs up, but we lost about 8 days in the middle of all of it to dr. rotations and therefore didn't get the feeding tube in when they should have. Let's save that story for the lawsuit. Or possibly later on in this update.

So now we are looking at the transition to the Eating Disorder Unit/team. This coming week, he will keep using his feeding tube, and start thinking about going on partial food/partial tube mid-week. At the moment, we are thinking he is going to move over to the EDU around the same time. I am trying to let him get his mind around the EDU as it is a very different environment from what he's come to know and love here in the main hospital. I believe psychiatrists call this Stockholm syndrome :-)

I think Monday - Friday of this week will be very hard for him. But, he is in better condition to handle it than he was 8 or 18 days ago. My goals for the week are to make sure he doesn't get pushed over to the EDU before he is ready. I also need to find out exactly who's 'choice' going to or leaving the EDU is. We were pretty surprised to find out that even though WE asked for him to be admitted to the hospital three weeks ago, once admitted, it was no longer up to us how long he stayed or whether we could take him home at all. Sobering. I do not want to get him admitted to the EDU if it is not up to us to decide when he can leave. In the best of circumstances, we would almost completely base that on what his team was recommending. But this has not been the best of circumstances. There are issues of trust between us and his team and him. I need to know that we have the power back. I don't think I can check him in if that isn't the case. It won't be easy to find a comparable alternative. And I won't check him in against his will. He surprised me today by saying he thinks he wants to do it. The surprise was just that I didn't expect him to get there so quickly. He has an amazingly good intuitive sense of what is right for him, so maybe that is kicking in. So, I'm going to keep doing the homework and pray for the right thing to happen, and for Ozzie and I to know that it is right.

What I am trusting is his own process and his body. The nutrition through the tube has done amazing things for him. It will be such a challenge to replicate what he's getting when he goes back to doing it himself. My true preference would be to let him keep getting it at night, in conjunction with what he does eat during the day. And, that could happen. I'd be happier if he could gain maybe 50% of his weight with the help of the tube. Though I suspect he will opt to ditch it asap once he tries eating again.

The other sobering thing is my concern about him and the other kids in the EDU. He's 12. A very young 12. I'm not so keen on him hanging with a bunch of 16 year old girls who are on their 4th time around in treatment. Not that there's anything wrong with that....but it's too much like prison - he'll end up learning all the tricks of the trade and move on to become a true anorexia nervosa patient. Right now, I consider him a 'medically-induced anorexic'. He wants to eat. He wants to gain back his weight. He doesn't want his stomach to hurt. It has hurt so much less while on the tube. He doesn't want to get fat, but he seems to understand the difference between healthy weight and overweight. So I will talk to part of his team tomorrow about that -- about what age group he will hang with based on what kids are in there now.

We have come a long way --- the difference in him is remarkable, tangible and heartening. The staff has gone from thinking he is a psychotic, violent flight risk to thinking he is the sweetest kid they've ever known, with occasional spikieness. If he can get even partly through this program, he'll get help that he really needs with anxiety management, stuck thoughts and his fear of stomach pain/constipation. The thing that got us into this whole mess in the first place. Which, I'm not going into any of that here. That is a further indictment of Children's Hospital and also me, as I was doing too good of a job at being the 'good MOC*' to the authoritative dr. *MOC is the notation for 'mother of child' that they use in the chart notes. "MOC is freaking out that they changed the Miralax dosage time"!!

Things I will not miss from staying in the hospital for three weeks:

-Emptying out 'hats' of pee. There is a pervasive odor in the room that does not take a break.

-Having another person in my room 24 hours a day straight, taking notes on every effing thing anybody does or says. I haven't had an unobserved conversation with my son for 17 days.

-Dire lack of sleep.

-Coordinating a wheelchair and a tube pole that is hooked to Adrian's nose around to go out for a
'walk' with him. I haven't earned my license for it yet, and the accidents are traumatic.

-Dealing with everyone else's needs and personality quirks. You really get to know a lot of the staff, especially when you have what they call a 'one-on-one' assigned to you. A one-on-one is a Mental Health Counselor who just stays in your room for their 12 hour shift, writing every 15 minutes into the chart on the computer. One of the ways you can qualify for this is when your son, the patient assigned to bedrest, decides he has to leave the 8th floor and find the nearest drum kit. It turns out this is forbidden. Defcon1. (Although I comically kept calling it Defcon5 the entire first week. Thanks to my geek friends for gently correcting me.)

Some of the 1:1's have been wonderful with Adrian. One or two of them are far too controlling, interruptive and have a need to be just a little too helpful. It drives Adrian crazy. I distract those types by making them talk about themselves. Moohoohaha. But the fun ones make life here better.

-More interruptions during the night than having a newborn.

-Seeing my son screaming, restrained, being carried from the bathroom to the bed and going out of his mind with fear. A few times.

-The teaching hospital thing. Look, I've worked at universities my entire career. I am a firm believer in higher ed. And, if your kid is having a life-threatening crisis, you might consider avoiding the teaching hospital. Organization and communication isn't the strong suit. And I do believe they have good intentions, it is just tough to implement such things in a multi-level, 'no one's in charge'-type bureaucracy. Pretty much everyone here is 29. Yes, I guess I've reached that age when the adults are so much younger than me that I don't recognize them as adults. And, there is nothing wrong with being 29, but you have limited experience as a dr. at that age. Tradeoffs. In this particular case, I can't help but wonder what would have happened elsewhere. Yes, Avista, I'm looking at you.

Things I am so thankful for after staying here for three weeks:

-Dr. Dan Reirden. Not wanting to be a drama queen, but I believe he just about saved Adrian's life 8 days ago. He told us on day 2 or 3 that the kid needed to be on a feeding tube. We believed him. Adrian got there himself a few days later. But 'Dr. Dan' had rotated off and someone else was 'in charge'. I would ask about the tube and was told, "oh, let's give it a few days". They talked Adrian himself out of going on the tube. I'm not over it yet. Dr. Reirden came back 8 or 9 days later. That rather fateful Saturday morning, I was temporarily kicked out of the room while they were trying to calm Adrian down and gently remove him from the upper right hand corner of the window, I came to the realization that I had to demand they get him on a tube and give him some medication to reduce his malnourished-brain-induced-traumatic-reaction to every single thing. The kid could not think. They should have gotten a penalty flag every single day since about 9 days earlier for unnecessary trauma. I went back down to the room, just in time to see good old Dr. Reirden walking toward me from the other hallway. I'd been up for 4 hours, he'd been back on for 2 and we'd both come to the same conclusion. He started explaining what he wanted to do. He actually told me that Adrian had *lost more weight* since he'd been at the hospital. I listened, he said 'what do you think?' I said 'dude, you had me at hello 9 days ago.' He was the lucky one to explain to Adrian that they had kind of screwed up and boy, he did a fantastic job talking Adrian back into the idea of it. He also prescribed an extremely low dose of a better medication to help with his over-the-top anxiety. And for a week, he was in charge. Adrian really liked him.

24 hours later, things were different. No outbursts. More sleep. 48 hours later, he already looked just a little tiny bit more like I'd remembered him last fall. A week later, he is acting something more like his old self. We don't have the laughter back yet. He will laugh politely, but not the joyous and contagious sound we had come to love. I hope someday to hear that again. So, thank you, Dan Reirden. Oliver Platt will play you in the movie. One of the benefits to being the author of the book is that I am going to make a deal to also be the casting director.

-I'm very thankful for so much of the staff we ended up with. We had some nurses and 1:1's that have been just golden. They were able to see past the freaked out boy and get a glimpse of who he is underneath. Which paid off really well for them, as he is also grateful and does things like burn them CD's and bring them lollipops. It took us a little while to find our peeps, but we did find them.

-What a learning experience for Adrian. He's going to be wiser at 13 than I was at 40.

-The dogs that visit

-My friend Paul, his family, my husband ozzie and his family, and everyone near and far who has offered support. I'm a bit sensitive about Adrian's situation and who I tell the story to. I don't think everyone has the capacity to get it, and I'm lucky that there are people close to me who do.

-The tootsie pops in the gift shop (Adrian negotiated with Dr. Reirden that he could have one tootsie pop a day while on the tube f/t).

-Our first resident, Dr. Jasper. He took the time to develop a real relationship with Adrian, and Adrian trusted him. We lost him to 'rotation of service' a few days ago :-) (To be played by Chris Elliot in the movie.)

-Dr. Kaplan, who, although I didn't agree with his avoidance of the tube, I liked his weary style. "I've been doing this for a loong time", he said several times in one day. He told me, and I'm paraphrasing here, 'oh, you know, it's a teaching hospital and everyone thinks they know everything and they need to be seen and so sometimes the right decision doesn't quite.....just call me if anyone tries to mess with you.' Casting: Latter-day Bill Murray.

-Shandra, the favorite nurse. She gave us her number to call her on her days off if 'anyone tried to mess with us'.

-Baba Ganoush, the 1:1 sometimes known as Erin, who is the best Yahtzee-playing, Scrabble-wrangling playmate a12 yr old boy and his mom could ever want. I adore her. I think we've spent 5 12-hour daytime shifts with her. She and her mellow-yellow ways will stick with me for a long time. Named after some nicknames in "Wedding Crashers". Can't figure out the casting yet. If I could get a young Ellen DeGeneres with a blond, corkscrewy wig, maybe.

-Matt the CA who doubles as a 1:1 on the weekends. He gave me the real gen-er-al hos-pi-tale scoop, and helped me understand why it felt like we were in hell. I'm thinking Rainn Wilson will play him, though it could be Bobby Moynihan from SNL.

-Harold Ramis, Bill Murray, Danny Rubin (screenwriter) for the film "Groundhog Day". I couldn't have done this without you. The film gave me a framework for my life here and inspired me to get it right.

Sunday, March 27, 2011

How Can I Go To a Church?

I've attended a church called "The New Church" for the past 5 years. I like the community. I don't necessarily believe everything that they profess to, but I like being around people who are trying to do the right thing in their lives, and who intend to act from love. It's the only church I ever attended that has the freedom to say that other religions (or no religion) can also be fine. I have my own words for things - I believe that there is a higher love and consciousness and that is what I am referring to when I reference "God". I don't believe that it's our place to make certain judgements about each other. It's impossible to know what is going on inside someone's mind, spirit or body. What keeps me there is the music, and the people I play it with, which includes the pastor. I love playing in the band, and I love hearing live music with a spiritual bent (I am a Who fan after all) when others play it. And, I love to pray. When I first met the pastor, I noticed a huge poster of The Beatles on his office wall, and I figured this was a match made....well, in heaven.

Marriage is a big thing with the New Church. Going there has really helped my own marriage with Ozzie. Ozzie and I are the last people you might expect to go to a church. But we find that it gives us an hour or two to evaluate ourselves, and our life together, and make changes if we need to.


Today, we were talking about marriage, and what is appropriate inside and outside of marriage. My husband Ozzie made the point that not everyone has the opportunity to be married, so maybe it can't be so black and white? He got into a conversation after the service with the just-out-of-seminary assistant pastor and was told that 'homosexuality is something to recover from'. That prompted Ozzie to write a bit of a protest to the pastor, who was away. That hadn't been the stated point of view of the our local church in the past, as we knew it. Granted, the Boulder version of the New Church is probably considered a bit out there by the 'corporate' church. Ozzie did a little research and found a page where a New Church administrative group wrote up a summary of their thoughts on homosexuality. It prompted me to write this as a comment. (I don't recommend reading the page, although this article was the lone stand-out in terms of being written by someone I'd want to hang around with.)

"It's interesting to me that the New Church, and Swedenborg, seems to go out of its way to explain the "non-literal" translation of The Bible, Old testament and New, yet takes all these alleged references to homosexuality at face value.

I would propose that the New Church is limiting its consciousness by how it is choosing to view body type. My body type looks like a woman. My gender seems to be mostly feminine. Others I know with female body types have much more of a masculine gender - with the 'traditional' masculine strengths. And vice versa. Many of those more masculine women are labelled as lesbian because they are attracted to the feminine in another woman.

If you look at the study of intersexed humans (once called hermaphrodites) - those who are born with mixed or ambiguous genitalia - you find heartbreaking cases where a doctor made an arbitrary choice that 'this is a girl' for someone who clearly identified as male. What most enlightened people do theses days is let the child grow and self-identify as male or female.

The existence of intersexed humans to me clearly shows us that gender and body type do not always concur. It seems then that it could be true in all sorts of people, not just the physically intersexed. Why any of us should decide what body type someone else needs to be with...I don't understand. Consider gender as a continuum. We all fall on it somewhere. We've all been given a body that also falls on a continuum beween male and female, with intersexed humans somewhere in the middle.

Why not let the person inside determine where they fall, and who they are attracted to. Perhaps masculine----->masculine is an "abomination". I don't know. But there is no way for someone outside a body to determine which gender that person truly is. Perhaps gender *is* a spiritual issue, not just "natural". Judge not what you cannot see.

I've read just about all of the articles referenced here. Rev. James Lawrence really touched me with his point of view.

I find many of the other articles to be impossible to differentiate from any other Christian denomination, other than mentioning and quoting Swedenborg. I think the General Church could try to go the extra mile and think outside the box on the matter of gender -- in many ways, not just pertaining to homosexuality.

There are some good films and documentaries that delve into the complex childhoods and lives of intersexed humans.

With all the emphasis on believing in a God we cannot see, and not relying only on our senses, I don't know why we are so hung up on the things we can *only* see.

I'm not giving up on church, however. I think change comes from within.