May 2008

As I’ve written here several times, I suffer from Major Depressive Disorder. My depression, however, was never the “can’t get out of bed” kind. It was more the “don’t talk to me or I’ll bite your head off” kind. These days, however, I’m struggling with what appears to be some sort of chronic fatigue, but I’m not depressed. When my brain turns on me, there are a few telltale signs: thinking in loops and thinking of suicide. I’m not there. I’m just freakin’ tired and confused a lot of the time.

The smallest physical exertion causes me to feel exhausted. I’ve been using mind-over-matter to get simple things accomplished, and staging my son’s 6th birthday party on Saturday was, for me, a Hurculean task. Of course, I set the bar way too high, and Friday night was putting together the last pieces of his Christmas gift that I had not assembled yet: a 6 foot geodesic dome climber. Then, as it was growing darker, my husband and I worked on putting up the zip line, cursing at each other, with me growing more and more tired and unable to help.

While we were assembling it, I kept dropping and losing the pieces. My husband was obviously getting really irritated with me. But, I don’t know what was going on. I am the queen of assembling complex things and following instructions. But, I’ve just been losing it with complex tasks these days. What I’m still able to do is write, read, and whatever creative work I can eek out (I got an informal comedy assignment at work last week, and that energized me). But, more complex things, like programming and scripting, or following directions, or participating in conversations, are becoming a big, big struggle. Add to this that I fight off wanting to sleep no matter how much sleep I get. Today, I found myself trying to keep awake at 10:30 am while driving back from Fredericksburg.

I am going to the doctor on June 3 to see what’s up. I’m thinking thyroid, maybe, since that’s what my older sister and aunt had. Autoimmune diseases are all around my immediate family: Sjogren’s, hypothyroid, Sclerderma, Reynauds, eczema, Parkinson’s. So, there’s a good chance it’s something like that, although I’m none too happy about finding out. Whatever it is may explain the infertility thing, too, since thyroid disorders are sometimes co-morbid with infertility. I’ve always wanted to get an answer to my fertility issues. The specialists are just willing to label you and charge you $15,000 for IVF, but, funny…they never actually tell you why you can’t conceive. When I suggested at the time to the world-renowned fertility doctor that it may be autoimmune, and could he suggest any tests, he just dismissed it with a “well, if you want to, but there’s really no point to it” kind of an air. But, don’t get me into the 3-card monte that is the infertility industrial complex.

If anyone out there has experience with this kind of chronic fatigue thing, let me know. You know what my secret desire is? That my body is trying to tell me that I should be working as an artist, and it’s shutting off my left brain once and for all. Would that I could respond swiftly. Sigh.

To get more sleep, I got myself a DVR to record John Stewart and Stephen Colbert. I know they re-air at 8 pm the following evening, but I’m usually not in front of the TV until about 9:30, so I saw the general “necessity” (read in the context of my white pseudo-bourgeois lifestyle) to have DVR service from Comcast.

Added bonus: I get to catch up on my favorite soap. I’ve been watching All My Children since 1973 and it became something that my Mother and I shared. So, I still watch, and feel my mother by my side, making sideways, smoke-filled wisecracks about the idiocy of the characters we were addicted to watching. I also record House and The Office.

However, there is one show I’m totally ashamed about recording: Dr. Phil. I think the guy is an all-out jerk who bullies people, but, I’m addicted now to watching it. I am absolutely astounded by how many people there are who are willing to go on stage, tell their most private stuff, and have a bald guy yell at them to stop what they are doing. If that’s all it took, most of these folks would never need to show up on the Dr. Phil show. The world is lousy with old bald guys yelling at you to stop playing in the street or get off their lawn. I’m sure at least one of them would help if you asked them to tell you to stop just about anything.

What causes me to write today is the subject matter of the show which is one of those things that makes me feel like a foreigner in my own culture. It’s about disaster wedding stories. The young woman was absolutely devastated that it rained on her wedding and the cake fell down. She recounted how this type of disaster plagued her at all her major life events, which she listed as: Sweet 16, Homecoming, Senior Prom, First Valentine’s Day with hubby, Second Valentine’s Day with hubby.

This list of events seem to be the boilerplate list that American girls/women check off as they go through puberty and early adulthood, culminating with the wedding. She said something that I have heard so many times, “Every girl dreams of the perfect wedding.”

I didn’t have or want a Sweet 16 party, hated that I had to go to the prom (I was President of the Student Council so it was “good form” to go), didn’t have a homecoming in our all-girls school and never liked that kind of school/sports-centric thing anyway. As for Valentine’s Days, I can’t keep track of what I’ve done on any Valentine’s day enough to have kept a list of the bad ones, and there have been quite a few of those.

As sad as I am that this young woman is trapped in this illusion that life is measured by the level of perfection for all of these proscribed tableaus along the trajectory towards womanhood, I am alienated that I was never one of those girls who always dreamed of the perfect wedding. To be honest, I didn’t give marriage much thought until I got to college. And then, I was always more interested in finding the right person than having the right kind of party. I was so interested in finding the right person that I did it 3 times:)

This last time with Noel was in our apartment in Brooklyn with 35 of our AA friends and some family. I baked the odd looking cake, an uncle and my mother-in-law made the food, and we took our vows barefoot in front of the fireplace. It was a quirky, poorly-planned party, but it seemed the proper scale for my life at the time.

Maybe it’s because I’ve had so many big events in my life that seem so important to me, I’ve never aspired to the perfect wedding. The marriage always seemed more like the event than the wedding. I think there is a danger in aspiring for perfect moments based on a standard that is not necessarily driven by the moment when it comes. The one time I had a blowout wedding was the second time, and that’s because my father had just died, and my mother wanted a big wedding to get her mind off of things. I hated it, and I threw the pictures out years ago because that perfect wedding was just too darned painfully not-me that I could not bear to look at them. I later used one of the pictures for publicity for a comedy show I was doing called “Busy Being Beautiful.” The look on my face was like I was hermetically sealed in an emotional iron maiden that said “stand with your ankles at a right angle to each other and smile.” To my mother, I was beautiful, and I was marrying an architect! To me, I was as far from myself as I’ve ever been.

Measuring the success of one’s life based on the quality of these essentially lifeless and stationary programmatic events in time comprises a spiritual poverty. Unfortunately, this kind of impoverished thinking is like a virus in our culture. It’s just one of those things that makes me feel less and less a part of the culture that surrounds me.

Maybe I should stop watching Dr. Phil?

My son’s psychiatrist is going out of business (I guess you have to say “closing her practice”) because she can get paid only 37% of the time from the insurance companies. She is a developmental pediatrician AND a child psychiatrist so charges health insurance as a primary care physician. I like that mental health treatment can be considered a component of primary care. Alas, the health insurance companies are getting wind that cognitive and behavioral struggles can actually be claimed as an organic, medical issue, and will have none of that. So, the only competent physician in this area in Charlottesville is being put out of business. She has to refer us to someone in Richmond, so bad is the local consciousness about children’s brain issues. But, no fear! The kids she WON’T treat will grow up and be forced into involuntary treatment by our spiffy new laws! Problem solved.

My own health insurance paid for Blake’s sessions with the doctor, but, although there was a prescription for speech and language therapy, and a full evaluation, will not pay for the speech and language therapy. Anyone who has a child struggling with a different brain knows that learning issues like speech and language can frequently exhibit as part of, or in conjunction with, the underlying condition. School psychologists LOVE to parse the chicken and egg on this one, and talk about childhood traumas as a “cause,” as though that’s a way to help “cure” the problem. Zen philosopher Alan Watts said that humans are the only species that bother trying to find out why. To my mind, in matters of psychology and personal narrative, the why can be a barrier — the genius of the why is in the sciences, and that’s where it belongs.

Color me simplistic, but, how about we forget about psychological “why” and treat the whole child’s whole brain: anxiety, executive functioning, speech and language. I must be crazy! It will never work. We need months of talk therapy to find out which psychological trauma specifically caused it. And, we need to get reimbursed for only 50% of the cost of that by our behavioral health (I LOVE that term!) insurance.

In my son’s case, a very low dose of methylphenidate is helping with the impulse control and executive functioning. He is no doubt happier, calmer and better equipped at school. But his anxiety issues are still present, and exacerbated situationally as well as cyclically. Since language processing and retrieval is difficult for him, this heightens anxiety at a charged moment when you’re trying to calm him down: he can’t tell you well what’s happening, so he explodes. The only thing you can do is restrain him from hurting himself, talk calmly, bring him down to the moment (What color is the ceiling? Where are we?) and wait for it to subside. After the mayhem, he manages to squeeze out amazing things like “I was angry and I apologize.” A kid that makes a statement like that is not a kid with issues of maturity, discipline or intelligence. He just has trouble retrieving what to say when the feelings take hold.

Thanks to an amazing teacher at his school (not his teacher, unfortunately), we are using Social Stories to help with the situational anxiety. But, overall, his difficulty with language heightens the anxiety and makes the mood swings worse. To me, that’s a sign that something’s going on in the brain (part of the body, no?) and therefore a medical issue. But, to the insurance company, his language struggles are a “developmental” issue. In order to be considered a medical issue, and therefore reimbursed, our son would have had to have been part of an early intervention program. So, here’s the deal with that.

Since he was born prematurely, we were entitled to an early intervention screening. In addition, in the NICU, he was tested for brain bleed, Apgar, the whole nine and nothing was wrong (or, as they like to say, “remarkable”). I took him for our one complimentary early intervention screening when he was 3 months old. He was right on target, no worries. Therefore, if we wanted treatment for anything that arose, they could provide it, but at a cost.

Here’s the flaw with that: many of the more subtle brain issues that affect learning and behavior don’t manifest until the child is in an environment that demands those skills. We saw at 3 years old that his language was suffering and that there were issues with his mood. His pediatrician said it was fine. His psychotherapist said that his speech was fine, but that he was traumatized by a failed adoption we experienced when Blake just turned 3, and that being adopted was traumatic. The treatment for the former was paid for by our health insurance. The treatment for the latter, over a period of a year and a half, was paid, only 50% worth, by our behavioral health insurance. In neither case was the money well spent.

So, Blake is in school this year, and his language struggles (determined to be normal) are enhancing his anxiety to the point where he runs out of the classroom and acts aggressively at moments when he feels pressured. The school psychologist says that its attachment disorder from being adopted (he’s been with us since he was 10 hours old). I think psychologists in general consider adoption to be a disorder, or a treasure-trove for unlimited sessions of painful and futile inquiry. At any rate, that was a useful diagnosis. I’ll get right on that.

We finally were referred to the person who can help him. This amazing pediatrician/psychiatrist/NEW YORKER (!) who pinpointed his language difficulties in 5 minutes. We felt so validated we could hardly speak. He got the evaluation, diagnosis, and treatment plan he needs. But, it won’t be paid for because THERE WAS NO RECORD OF AN EARLY INTERVENTION PROBLEM.

Now, I could have asked Blake at 3 months old to conjugate verbs and exhibit proper syntax for the purpose of the evaluation, but, I was negligent in that regard. Now, since there is NO apparent neurological problem afoot (according to the records), it’s a developmental issue, not a medical issue.

My friends who fight these issues for their autistic son every day say that this is the medical insurance’s way of kicking back to the school system. But, the school language person can’t get him to speak with her, so says she can’t evaluate. I find that kind of ironic: not speaking seems to be a speech and language issue, no? But, I’m being far too intelligent. I sent her a video from home, showing how he constructs sentences. She thanked me and said that “What I saw was pretty good.” Oops! I guess we’re not getting treatment there either.

So, here’s the deal: If our son had a stroke, or fell on his head, and exhibited the same speech and language struggles, he could get the same treatment. However, if he simply has a problem that our diagnostic tools are not yet sophisticated enough to pinpoint on an MRI, then, well, it’s “developmental”. The bottom line is that we can’t afford $135 twice per week for treatment. We are going to argue this one out until we are blue in the face (I’m a shade of purple at the moment). We will GET him what he needs. But what about all those other kids out there who don’t have a smart, obnoxious mother from NYC, a father in a neuroscience PhD program, whose school systems are even worse than ours, whose parents may have the same issues that have gone untreated (like Blake’s birthmother, whom we offered to get treatment for, but she declined). Will they wind up in involuntary commitment when they slug someone out of panic because they never got the tools they needed to go through life with their brain as it is?

Ask Governor Kaine.

I am a day late in the May 1 Blogging Against Disablism event. Life intervened on my schedule, and I’ve been working on this post for a few days. Although this is tardy, I offer it as my contribution.

A little over a year ago, a student named Cho Seung-Hui went on a shooting rampage at Virginia Tech. It was an unbelievable tragedy: 32 people shot, with the 33rd being the shooter himself. Parents lost children, families lost parents, friends lost friends, and the nation lost trust in the safety of colleges and universities. What ensued as a result was a national dialog, and an expanded legislative menu, dedicated to issues of liability, accountability, and enforcement.

As with so many public tragedies on this scale, we lack the will as a people to swim further up the food chain of an event to get to its origins. We like dealing with preventing horrific results, and that rarely pays off in solutions that drip with compassion. When you have a group of grieving parents, students, and a nation, the need for urgent action overcomes the need for deeper understanding. This is particularly true in the realm of political leadership, appointed and elected. Public money generally goes towards demonstrable solutions that guarantee re-election and a continual flow of local pork, not necessarily deeper problem-solving about why our society is like a petri dish for violence and tragedy. As one of my favorite Disney heroes, Shrek, would say, “Grab your torches and pitchforks!” We like doing that a lot.

Torches and pitchforks firmly in hand, we can march together, simultaneously feeling like we’re solving the problem while conveniently disowning our part in perpetuating it. We disown those whose brains are structured differently because the results of their disability demonstrates so clearly that they are not like us, less than human, having to be “dealt with” rather than understood. They can’t be understood, which we chalk up to the inhumanness of their behavior.

I remember the days following the shooting, feeling like I was in a surreal place. “We are all Hokies!” Why, in my own struggles, did I feel like, “We and those like me are all Cho.” Who, by the way, was a Hokie, however ambivalently so.

As a person suffering with major depressive disorder, and loving folks in my immediate family who are bipolar, alcoholic, and living with the Cho diagnosis of “selective mutism,” I do not have the luxury of disowning the humanity of those to whom my fellow citizens conveniently refer as other. I can’t apply that narrative because I know too much about the humanity that inhabits those of us whose brains were hard-wired on, shall we say, the alternate specifications. And the minute that a disowned object becomes subject, narrative goes away. You are confronted with only one thing: the bare, beautiful, horrible reality of the human mind in its infinite potential for choice, informed as much by simple chemistry as by what we call (in our theologically-generated narratives), conscience. You arrive at the unavoidable compassion that arises from stepping inside of the experience of the conflicted, and you cannot escape your responsibility in shaping a world that makes room for them, too.

We make room, in institutions like prisons and psychiatric facilities. We physically separate from this population so as to not be confronted, day by day, with humans who think differently on the alternate specs. We like to kill them sometimes. We like to demonize their parents, as though the 19th century notion of the sins of the parent visiting the child were still a metaphysical supernatural truth (but now we have Freud to give that old take a more modern narrative — phew!).

Then, we pass legistlation like Virginia’s brand spankin’ new involuntary commitment laws, which Alison Hymes has bravely railed against daily — a windmill-tilter if there ever was one, and one of my heroes. Able-minded folks have trouble listening because to open up this dialog is to open up their responsibility in building a world that prevents tragedy through compassionate health care and housing (more economical and efficient, by the way) than punishment for those with the alternate spec who need an alternately-appointed environment in which to thrive.

I was doing architectural planning and building code consulting in NYC in the 1980s when the disability act came to fruition in the codes. Folks lined up at the Department of Buildings the day before to secure an appointment for plan approvals prior to the onset of the law. Folks didn’t like the extra expense involved in grab bars, wheelchair ramps, and larger bathrooms. I remember working on a project for a bar/restaurant on the upper west side that didn’t make it in under the wire, so they had to provide a wheelchair accessible area to enable the hiring of a disabled bartender. The restaurant owner, not the nicest of men, was, shall we say, colorfully dismayed in a NYC kind of way.

Being kind, and open to the possibility of sharing the world with those needing accommodations that on the surface we read as “unfair,” is more work than punishment, but much less flashy than a shiny new prison and gleamingly extreme legislation. I remember even in a Unitarian Universalist church I was met by a supposed bleeding-heart liberal person with “I’m sorry, but these people are NOT going to be cured just by loving them!”

I could parse that many ways, but for now, I’ll focus on the word “cured.” We like to “cure” because it eliminates the problem. But, compassion does not imply cure. It implies living with a condition in dignity and cooperation, in community, getting treatment openly and without shame. It means the same coverage for preventive psychotherapy as for medical treatment. Here are a few alternate versions of recent events that could have been prevented by such a world:

1) A brilliant academic living on the alternate spec rises to the top of his field, to the level of President of a university. He does not fear reaching out for help under tremendous stress because, like a diabetic or someone with heart disease, his spec requires alternate treatment. He openly negotiates a contract allowing for time at AA meetings, psychotherapy, money for medications, and flexibilty in workstyle that suits his temperament. As a result, he is able to fend off crisis episodes, keep functioning brilliantly, bringing insight to the job that someone else, who may not be on the alternate spec, cannot. (the real story here>)

2) A young man on the alternate spec includes this information openly on his university application. All of his teachers, advisors, and deans know about it. His need for accommodation is expressed as openly as the needs of the man in the wheelchair or the woman with the guide dog. It is not hidden under a cloak of shame, so everyone in his environment has the information they need to help him complete his academic career. As a result, he is able to live in a special community on campus with others who are hard-wired more as he is. They even have a public voice on campus, and walk in the sun, instead of the shadows. His professors confer with each other each semester to make sure that they are all on the same page about the student’s progress and accommodations. Rage that could otherwise build up in shame and secrecy instead is prevented. He is loved, and he walks side by side with others like him. (the real story here>)

3) A little boy who is adopted inherits an alternate spec from his birthparents. His adoptive parents are able to let the neighbors and teachers know about this so that they can understand and assist in providing the boy with an openly-welcoming environment in which to grow. They let the boys parents know when he seems to be struggling so that he can be helped. They use the boy’s situation as an opportunity to teach their own kids about how everyone is different, and everyone is deserving of compassion. The boy, as a result, is never shunned, but is aided in his development and embraced for his difference. (the real story here>)

It’s simple economics that an ounce of prevention is worth a pound of cure. Compassion is, therefore, the most economical way to create a better world. It’s time to grind the torches and pitchforks into plowshares, to lose our insatiable appetites for retribution, and hunger instead for a world of universal justice and love.