Hoopla

Any person who has broken his back and can walk knows what gratitude is. It was a good Thanksgiving. We had a relaxed mid-day meal. The dogs didn't get any of the food.

The food deserves it's own paragraph. We had a turkey basted lovingly in butter and Reisling, covered with cheesecloth until the last quarter hour, as moist as the day it first gobbled. We had a ham, a big local one, cut cross-hatch and basted in brandy and brown sugar and slow baked to let all the wonderfulness soak in. It was pork, as candy. Robyn mixed sweet potatoes and sliced sauteed apples. We had mashed potatoes and green beans with the french onion thing going on and cranberry jello stuff and the traditional Caitlin's boiled cranberry relish, which is actually fabulous, and we had three pies: pecan, pumpkin and apple. John whipped cream, really whipped it with a whisk, and we ate it on our pie, glad to be fat and happy and warm together.

Why, then, did we all go out into the bitter cold and stand outside a Target for two and a half hours? It was windy, too, a breeze that cut through my parka and my stocking cap and reminded me how old and frail and middle aged man can be in the early morning, with no rising sun in sight.

I learned a few things from this adventure:

1. When your son says "I think we should go earlier" he is right. We did and we got the television. Had we come a half our later, our success would have been doubtful. 2. Columbia parkas and stocking caps are great, but nothing beats an old wool blanket held over the head Civil War POW style. 3. Some people need their mommies to dress them. There were a lot of people out there in light coats and no hats. I don't think stupidity entitles you to favors from God, if that's what they were trying. 4. Prepare to be tazed for causing a ruckus. There were lots of cops patrolling and the tiny Target security guy insisted in an adolescent voice he wouldn't tolerate nonsense.

The last time I stood in line for an equivalent period of time, it was 1975 and I got Dylan tickets. It was a great show, the Rolling Thunder Review, and the memories lasted longer than any television I ever owned.

The second Thanksgiving was at my father-in-laws. It's the one I rant about every year. I think we can just replay last year's rant. I did the math this morning, and there were five people there I like, including my father in law. There were six people there with whom I would go to great lengths not to visit. (Notice I didn't end with a preposition!) We sat in a semi-circle around an enormous television. Robyn says I'm focusing on the negative. The whole scene left me in a bad mood even though I was psyched up to be a "sport." I might have made it but the only other company when we got there was the "neighbors," a relatively nice not very bright buy guy with a toupee that would only be more obvious if it got up and danced on his head, and his wife, the alcoholic former prescription drug abuser, who offered up nuggets of wisdom such as "violent videos are just awful," "that dog is going to knock over my wine," and "oh . . . oh. . . my vertigo! (x12)" The social worker in my wanted to suggest that wine and vertigo are perhaps not the best combination, but then neither are abject stupidity and verbal expression, and that never stopped anybody.

I left in a foul mood, no longer thankful for any-fucking-thing. It took me the rest of the day to decompress by myself in the upstairs bedroom, muttering to myself. Today is sunny and stretches out before us filled with possibilities, strengthened by caffeine and foolish optimism.

Nathan Bell suggested yesterday that we all celebrate monkeys, and call it "Thanksgibbon."

SonShine

I like to get up early on Sunday. I usually drink some coffee, read the paper, then go see Mom. I try to do this every Sunday because Mom can't tell if I'm there or not and I could never go or go twice a day and she wouldn't know which.

Since she's moved to the nursing home Mom has been attending church. Attending is probably the least appropriate term for what she's doing.

Mom's consciousness exists for seconds at a time. These seconds are very seldom connected now. If I sit with her, I often get a glimpse of her, of some familiar neuron firing, perhaps for the last time, and Mom looks at a sleeping old woman and then at me and says sternly: "You should help her." I tell her I will.

This morning I was confronted with very energetic, pretty doggone old volunteers who were busy wheeling residents, except for those who declined, to a room at the end of the hall. I found my mother in her high backed wheelchair, in a line, like a stately old jet at O'Hare, waiting for takeoff. I woke her. She sleeps most of the time and had no idea what she was in line for.

When we moved to Wichita in 1965 we were not a religious family. We'd lived in Illinois, New York, West Virginia and Ohio and it hadn't really come up in our conversation as a family. "Where's God?" I asked once. Mom said "God is everywhere." Mom was a Catholic girl who left the Church and her family to marry Dad, a divorced Non-Catholic. "In the potty?' I asked. I think Mom changed the subject. I was three and she could do that.

Southern Kansas - well, really most of Kansas - follows one evangelical Christian faith or another. Evangelicals must witness to others to fulfill God's plan for them on earth and so I was repeatedly questioned by all my new friends, who wanted me to come to their churches on Sunday mornings, or to Sunday school on Wednesday night. That's "church night." After not very long, my good friend Jay invited me to go to Olivet Southern Baptist Church with him. I was intrigued, and told Mom, who said, not missing a beat:

"Oh, didn't I tell you? We're going to the Unitarian church this Sunday. We already have plans." That's how Mom saved me from the Southern Baptists.

Given this history, I decided that I needed to step out of my comfort zone and see what this service was all about. An energetic old woman had already gotten me a chair right by Mom, who is really slumping in her chair, sawing logs. Big logs. Mom is 5' 10" and I can't lift her up in a chair without hurting her, so I asked one of the energetic old women to help me, but she wasn't allowed. "God will give you strength," I wanted to suggest.

I found some help and got Mom straightened up so she wouldn't be rolling on the floor. I was pretty sure that this was not going to be that kind of service. For a while, the energetic women continued to roll their audience in. Some were cheerful and responsive. Some, like my mother were somewhat less aware, or not aware at all. Mom, for instance was snoozing happily. One wonders why they couldn't have just rolled them from their rooms directly to the church room, without lining them up in the halls first, but I didn't inquire. God works in mysterious ways.

A husband and wife team led the service, eventually Both looked retired and energetic. The woman apologized that there was no piano but let the room in song , referring us to the SonShine Songbook, Large Print Edition. I found it at the SonShine Society website.
The energetic woman began to sing energetically in a voice that was quavery but strong and mostly in tune. Others sang along as best they could, songs about how Jesus suffered and died and how we should humbly glorify him and his Father God, how anyone can be assured of Heaven, how for every instance of pain and suffering there is, somehow a Plan. The plan involves me and Mom joining up, of course. Not much chance of that. Remember the Spanish Inquisition! I'm the strangest creature you ever have heard: my mother's a virgin, my father's a bird! Nananananana! During the second song, Mom woke up, and picked up her side of the Victory Edition SonShine songbook. She looked over at me and smiled a beautiful smile, one I remember from church a long time ago, holding a Unitarian Universalist Hymn-book full of not much better songs. She tried to sing a few words, then flickered out, a brief signal on an old television, and went back to sleep. But what a smile that was! It warms me up just remembering it. The minister talked to us about showing humility and bowing down before God. I thought about Mom's evil illness, how it's rendered her incapable of noticing that she's at a Christian service, or that I am with her. I'm humbled by this terrible disease and it's certain victory over my mother. I wonder how this could possibly be part of a Plan. What an awful plan. New plan, please! Still, that smile. . . the minister wrapped up and we all began to wheel ourselves out of the room. An energetic old woman thanked me for coming and I thanked her for having us.

I wheeled Mom back to her room for a long snooze. Was a time she'd have politely dismissed these folks and spent Sunday morning with a paper, or with a bunch of nerdy Unitarians and me. Now they can't convert her.

Hey, don't forget your SonShine pin!

Perhaps some hope

There's a fascinating article in this month's Harper's about "prodromal" treatment of schizophrenics. I can see your eyes drifting away, disappointed that I'm not ranting about Thanksgiving yet. I'm sure I will yet rant. Be patient.

The article focuses on treatment of schizophrenia while symptoms are just developing. This requires that psychiatrists listen to their patients with well tuned ear, since early pre-schizophrenic thought is a very introverted process. People ponder whether solid objects are really solid, they focus intently on religious or relational themes, latching onto symbolism or ritual to try to make sense of things that used to be certain. I knew a guy who spent a lot of time wondering whether or not his arms and legs really existed. This can seem "funny" but it's not. Schizophrenia causes the physical deterioration of the brain over time - patients' brain scans reveal widening fissures, significant measurable deterioration over time.

My father and his father both suffered from paranoid schizophrenia. Dad's most profound worry was that I too would succumb. My mission in life for a period of time involved the absence of this disease. Accomplishing the absence of something can be a confusing mission. To this end, my father and I had a number of fascinating conversations. We read R.D. Laing, a British psychiatrist who advanced a "behavioral" theory of the evolution of schizophrenia, which is now largely disproven. I was somewhat attached to the behavioral theory, given my dubious inheritance, but Dad didn't buy it.

What Laing did that was brilliant was to record a great number of interviews with individual patients and their families, sometimes scripting family interactions and interviews. This provided Dad and I with a look inside other heads than our own, gave us reference points for comparing our internal states. We were particularly interested in comparing my mental status at the time (an early 20's person) with the mind-set my father had before he had his first full blown episode, nervous breakdown, violent outburst, at the age of 27. Dad's behavior when psychotic was violent and dangerous, and it offered no basis for comparison, no way for me to relate or compare. I've just never thought about grabbing an axe, heading into my wife's bedroom, and accusing her of infidelity.

Dad talked to me about feeling a certain hollowness, emptiness, an absence of self. He was a good student, a talented writer, a decorated veteran and a very good teacher. His accomplishments always seemed hollow to Dad, as though he were playing a role, acting a part, rather than being genuinely present. He talked about no knowing how to love, or to trust the love of others, because of that same hollowness. He was preoccupied with somehow being a "success" in life but had very rigid and unrealistic expectations of what that would look like. He worried endlessly about interactions with other people, what they might have meant, what he should have said. He was a jealous lover, afraid of abandonment. How can you trust or understand others if you have no internal frame of reference? You're left trying to construct theories that somehow match the external world with your increasingly confusing thoughts.

Before Dad was a "mental patient" he suffered for years in this prior state, uncomfortable and uncertain, but not delusional or particularly unstable. At some point stress put him over the edge and he spent a good deal of the rest of his life teetering there, struggling with symptoms he recognized but could not conquer.

Psychiatrists in clinics that use the Prodromal treatment model are intervening with patients before the "big snap," putting them on low doses of the newer antipsychotic medications, allowing them the time space to regain their balance without experiencing the full blown agony of a psychotic break. The editors of the DSM-V, which will be published within the next couple years, are working to quantify this pre-schizophrenic state and define a diagnosis that will make it more recognizable.

It's early to say whether the patients at these clinics will avoid full blown schizophrenia. It's hard to stay on medication. Great stressors may still trigger psychosis. It doesn't sound as though there are definitive studies yet. The patient anecdotes in the article, however, seem to indicate that patients feel more control over their lives and are functioning pretty well.

Dad had fourteen years, corresponding to my later teens and early adulthood, when he was relatively symptom free. He was eccentric and occasionally cantankerous, but he was an active, involved part of our family. He was a wonderful father to me and a great support as I tried to figure out how to be an adult. He learned how to love us, to feel it, and to be loved in return. He has told me several time that this was his proudest accomplishment.

One day, during the time when I was living alone after moving out of the home I shared with my former wife, Nancy, he called me and in a strangely familiar voice asked me if "I had been hearing things about him." His symptoms were back and he could no longer internalize them. I assured him that I was not hearing anything and begged him to contact his doctor, which he did. What ensued was a fruitless painful struggle to find something that worked for him. The meds that bought him 14 years betrayed him, leaving him with nothing but tremors as a side effect. Dad submitted to electric shock treatments, culminating in a particularly barbaric process called "maintenance ECTs" which involved ongoing regular shock sessions, rather than discrete periods of treatment followed by recovery. ECTs scrambled his thoughts and left him very confused. They did not control his symptoms but no one seemed to have any other ideas. Eventually Dad learned about a new trial medication called Clozapine and got himself included in a study. By then we discovered what we thought were neurological side effects of anti-psychotic drugs were actually the early symptoms of ALS. I'm still convinced that the ECTs weakened his neurological system, making him vulnerable to ALS.

When I close my eyes and call my own name, I can feel myself, inside myself. I am a person, responsible for my actions, taking credit and sometimes blame, loving and being loved. When Dad and I talked, I realized that this was the difference between my father and I. I am present in my own body, a self, a soul, and I can feel this. My father taught me how precious this is.

Courage among the severed hands

On Halloween, my daughter Caitlin comes into her own. She and her mother and Nana have collected a vast array of Halloween related items over the years, all of them tacky (but fun). Caitlin erupts into a frenzy of decoration which always includes stringing fake spider web across the front porch at just the right height to garrote her father.

My attitude toward holidays borders on the curmudgeonly. I like a few simple decorations (particularly if I don't have to do them). I already have my house arranged the way I like it and tripping over pumpkin related items placed inconveniently is not my idea of a restful home life. Put the pumpkin (one pumpkin) on the porch, get a triple bag of Milky Way, pour a scotch and we're set.

This little guy is Cullen. He's the grandson of our neighbor Jackie. He came over to admire the severed hand lights, multiple pumpkin, witch and spook related items, as well as the life-threatening spider web. He was evidently impressed and eventually touched one of the severed hands. I think he could have done Halloween quite successfully as a little skater and not changed a thing. Note the skull and crossbones on his stocking cap. He and his family came across the street to visit our dogs, the next door neighbor's and ours, who were in turn visiting each other in the front yard. After a brief interlude with dogs (dogs is just dogs after all) he went straight for the severed hands. In a very business like tone, he announced several times to anyone within earshot that he was going to be Spiderman. He was of the opinion that it was time to get into that Spiderman costume.

My father was a holiday curmudgeon. His birthday was "just another day" unless you forgot it. He would grumble about Christmas hassle and then get misty watching us decorate the tree. "This is the best tree we've ever had," he would inevitably declare. He and I are still one in spirit in this regard: we like to be taken along for the ride, grumbling. If you listen closely you'll hear small murmurs of enjoyment.

We had a visit from Spidey later in the evening. Here he is demonstrating his web prowess with some minor parental assistance. Note the mask slightly ajar. He's using his spidey-sense.

Some kids approach life with great gusto. There's a clarity to their enthusiasm. Cullen is full of juice and ready for the next moment's wonder. What could be better?

I really like that Spider Man costume. My favorite though is Cullen's natural skater look. I'm going to have to find one of those hats.

History revisions

This morning the puppy, craving attention, grabbed my freshly addressed bills and ran away. Maggie's quite fond of and adept at shredding paper, so I had to chase her down, although I try not to reward her like that. Payment on time and perforated! That's the way we like it!

After a week of research I was able to find and confirm my father's social security number. This entitled me to copies of his death certificate. I had evidence of the poor man, but nothing that counted with the Federal Government. I am evidence of the poor man, for that matter.

It's an odd thing to have a question about one's family, to think about asking one's parent, to realize again that they can no longer answer. Pieces of our history become unavailable. There was a period of time when my mother and I had some brutally frank conversations about our history together. I think Mom wanted to be sure I got the truth while she could provide it. I still have questions to ask, not the least of which was "Mom, what's Dad's social security number!"

A few years ago while rifling through literally hundreds of saved letters from my father's family I stumbled upon a letter from someone connected with a rooming house who had had a run-in with my father. In the letter, she put together some of my father's history in a way I had never heard, alluding to him as a "spoiled child, indulged, who was reckless, wrecking cars. . . and once shot another kid while hunting." The son of an insane person. My father had written a defensive note on it and given it to his mother, I suspect in response to her inquiry.

Dad was very intense and emotional. He was raised by his mother and grandmother, two world class worriers, while his father was hospitalized in an institution for the insane at Anna, Illinois. His mother, a woman in the early 1930's was assigned a guardian and given an allowance. It was all her husband's money. I'm sure Dad was a handful, and he told me about wrecking his mother's car, about swinging a shotgun around while hunting and blowing the top of a friend's head off. I recall that it was just the skin on his head and that he survived. I'm not sure, though. It was an accident and Dad did no time.

There are parts of our lives we'd just as soon not share with the oncoming generations. I'm sure not telling.

Some of my history, if I'm lucky, goes off into the mists off time unrecorded and unremembered. There'll be a lot of video of me playing in a band outside during the 80's and 90's. There's some stuff on public access video. There's a really embarrassing VHS tape of me drinking many shots of scotch in succession and sustaining an inane monologue for an excruciatingly long time (perhaps that will go un-noticed). Perhaps fairness and balance require that a little poison about us gets passed on, too. Someone's testimonial about what an insufferable shit I am. I suspect there'd be a few volunteers.

Send me some samples for review and I'll let you know.

Yum

Tye's the alpha dog here. He's nine and he was here first and for now he's bigger. Maggie's already faster, though and has the kind of nature that moves her to grab Robyn's panties and parade around the house with them.

Maggie taught Tye that cool air comes out of the grates. Tye always goes to the grate Maggie showed him. Maggie goes to all the grates.

Tye believes that as alpha dog, he has the right to eat whenever he likes and that he can stop Maggie from eating, even if he really doesn't want to eat himself. Maggie has her ways, though.

Whenever one dog wants out, the other dog goes out, too. I don't know why, but it's some kind of code, like the cliche about women and the powder room perhaps. Tonight Maggie went to the back door and barked. Tye looked up from his food and went to the back door to be let out. I opened the door and Tye went out. Maggie went to the food and started eating. I closed the door, leaving Tye outside watching Maggie eat.

I left him out there until Maggie had finished eating. You have to reward initiative.

You too could be a winner.

I spent the last few weeks going through boxes of documents, photos and papers in the basement looking for my fathers social security number. I used to have about seven death certificates for him - he died in 2002 - but for some reason I can find nothing now. I finally found an IRS document regarding my parents last joint claim that has an "ID number" that looks like a social security number, and isn't Mom's, so must be his, right?

This is all because now that Mom's in nursing care and almost through the money she got from selling her home, we are putting together something called a "Miller Trust." This trust is designed for people, like my mother, whose retirement income is steady, but not enough to cover the enormous cost of nursing care. The trust pays the care it can cover, and the rest is then covered by Medicaid. This is a good thing because it means Mom's expenses can be covered by her estate and not be passed on to her survivors.

Because Dad served with the Marines in Korea (his last message to me from his death bed was an ironic "semper fi!") Mom is eligible for support from the Veteran's Administration for part of the cost of her nursing care. After negotiating one of the least caller friendly voice mail systems I've encountered since Social Security, I got to Phyllis at the Commission for Veteran's Affairs. (The system is amazing. It says they're open, but no one answers. It give you an employee directory - not much help to a new caller - but no description of what anyone does. Phyllis called me back at one point and left me a message which did not include her extension number, so I had to go to the directory one more time. I couldn't help thinking that if I was a vet with PTSD I might have been tempted to save myself the trouble, hang up, and do something drastic.)

Phyllis was pretty helpful once she understood what I'm up to. People warm up to the only surviving son trying to provide for his dear mother who is in the last stages of an incurable progressive disease, and they should, dammit! After agreeing to send me the paperwork I needed, she hesitated and asked "Do you know how much time you have until she. . . passes?" I told her that Mom was under Hospice care, which implies a "window" of about six months. We agreed that it's really impossible to predict another person's demise, and that she could last quite a bit longer, really. Phyllis said that the thing is, it takes about nine months to go through the funding process. Once she's determined to be eligible, Mom can receive funding retroactively back to the time of application. If she survives that long. If she dies. . . no dice. You must be present to win!

This is one of a number of "systems" that depend on the ponderousness of the process to effectively limit which of many eligible recipients get the benefits to which they're entitled. Social Security Disability is another one. There's an entire industry built around the multiple denial, multiple appeal process that even a wizened quadriplegic in an iron lung must negotiate.

This morning I'm going to meet with a family that has decided to pay out of pocket for my services, rather than using the available therapists on a "list" provided by their insurance company. This company has what is called "a closed panel." The way these panels work is that insurance companies determine how many therapists they need in a given population area. They only "open" a panel when their number of therapists dips. This depends on therapists updating their own insurance information, which we seldom do, because there are a lot of different companies and besides we'd rather talk than do paperwork. In the end, this family couldn't find a therapist they felt their child could relate to, and felt strongly enough about it that they're going to forgo their insurance all together and just pay. This works if you're middle class and have a "cafeteria" health plan. If you're working poor, and happen to choose this insurance company for your Hawk-I (SCHIPS) coverage, you're ham-strung by this "panel" and therapist availability. The effect is that the company controls cost by limiting their customers' access to care. In this case, being alive doesn't necessarily help.

In the case of Mom and the VA, I'm really only going to be saving Medicaid money by going through this process. Mom's going to spend all her monthly income and Medicaid will pick up the remainder. Whether or not VA picks up a part is irrelevant to me. I'm done with those boxes in the basement for a while.