The end of the line: expectations collide with reality

And so I’ve come to the end of the line…the end of my 30 year career as an occupational therapist. I’ve been put on long term disability and terminated from my job. After 30 years of lifting kids at work and at home, the pain from my degenerative disc disease and spinal stenosis is unbearable, and the doctors say I shouldn’t be putting any more stress on my spine. Barring some medical miracle, I doubt that I’ll ever be able to return to this kind of work.

I have to say that, at the end of the line, my expectations had a head-on collision with reality. This certainly wasn’t the way I saw my career ending. It’s not that I ever imagined myself as a supervisor or department head. That’s just not my cup of tea. I hate telling other people what to do…I’d rather do it myself. I am the first to admit that I lack the organizational skills to manage or supervise, and that I have an aversion to paperwork that borders on a phobia. What I always loved about my job was working directly with the kids and seeing the progress they made.

But what I did expect was that all those years of experience would count for something in the eyes of my bosses and colleagues. I was wrong. I didn’t see Gen X and Gen Y coming. I guess I had always assumed that I would be supervised by people who were my seniors or at least my contemporaries, people who had respect for the knowledge and experience I had gained over 30 years. But, no, Gen Y disdains experience, you see. In their eyes, it only makes you out of touch and outdated: a dinosaur. In their opinion, it is irrelevant that I was practicing OT before they were born. So what if I had treated kids with disorders that they had never even heard of? So what if I had personally raised 10 kids with disabilities? (They felt quite qualified to give patients’ parents directions on managing behavior, even though they didn’t have even one normal child of their own.) I must have appeared to have no ambition and did not constantly promote myself, and to them those are signs of inferiority.

And, so, in the final 5 years of my career, when I felt that I had earned a measure of respect, I came up empty handed. When I signed on with the company, I was offered a respectable hourly compensation, based on my extensive experience. It was downhill from there. I first realized which way the wind was blowing when I attended my first Christmas party, when they announced the winners of Therapist of the Year. I’m embarrassed to admit it now, but I actually thought I had a chance that first year. But as I saw all of the 20- and 30-somethings step up to receive their awards, I realized that my time had passed. In meeting after meeting, I heard therapists praised for the astronomical numbers of visits they made each week, and realized that, given my declining endurance and energy, I could never compete. While the parents of my patients were often complimentary of my work, as their children made impressive progress, those positive words were never repeated by the bosses.

And then the downward spiral began in earnest. Those of us who had been offered a higher rate due to our years of experience saw our pay cut by 11%. This was a tremendous blow to me, as it signified a lack of respect for my accomplishments. With the onset of my son’s schizophrenia and then my dad’s death, I struggled with profound depression, but tried to keep plugging away. I was floundering financially because I was never given an adequate number of patients, and then I found out another therapist (one of the self-promoters) who worked in the same area was making 50 visits a week, compared to my 12 or 14. Last June I was given a mediocre job performance evaluation, and I was devastated, as I felt it was an evaluation that would have been given to someone right out of school. I have no doubt that the stress of that evaluation contributed to my heart attack the next month. I got an inkling that my decision to discharge a patient was being second-guessed between another therapist and the manager behind my back. I was quite disappointed that the milestone of my 30 year anniversary of practicing OT passed without mention. And then, the coup de grace: I recommended discharging a patient and his mother called the office to question that decision. Did the case manager and district manager express confidence in my professional opinion? Did they stand up for me and tell the mother that I had more experience than any therapist on staff? Nope…they arranged for another therapist to provide a second opinion, as if I were a rookie therapist.

And so my life’s work comes to an unceremonious end. No retirement party, no testimonials, no gold watch, no nothing. Just an envelope of COBRA forms in the mail and a last trip to the office to turn in my electronic equipment. The words of T.S. Eliot keep going through my head:

This is the way the world ends
This is the way the world ends
This is the way the world ends
Not with a bang but a whimper.

But wait, I do have a testimonial. A few years ago I ran into a former student of mine, a young man with cerebral palsy. He was in first grade when I started working with him my second year of practicing OT, so he was in his mid-30s when I ran into him. When I told him who I was and that I was his OT in elementary school, he grinned and said, "I remember you. You taught me how to write and how to dress myself. You wanted me to be independent. My mother wanted me to be dependent, but you wanted me to be independent!" And that was better than any Therapist of the Year award.

This and that

I've been letting my blog slide lately, I'm afraid. I'm still writing a lot of articles on Helium. I'm really enjoying it, as I'm learning quite a bit as I research various topics. Plus, I have to admit, I'm kind of competetive, so I like watching my articles move up in ranking.

I've also been feeling down. Sometimes I feel so isolated, and it seems like even if I try to reconnect with old friends, I don't have any success. I think that in the past, when I was going through trying times with my kids, I was abrasive and alienated a lot of folks. Or, maybe we just drifted apart. Anyway, on a whim, I called an old friend and we talked a long time. We were catching up on some common acquaintances, and, in an off-hand way, she said something like, "oh, I think that was when Leslie's husband died." I couldn't believe my ears. Leslie and I had been pretty good friends in the past and I had known her husband back when he first came to the US from Croatia, but we had lost touch over the last 10 years. I deeply regretted the loss of our relationship.

And meanwhile, I've had several calls over the last month or two from an administrator at the center where my mother lives, reporting that my mother has been getting very angry and almost aggressive at times with other residents and the staff. I felt like I had been transported back in time to the days when I got all those phone calls from my kids' schools about their behavior! I called her doctor and he prescribed some medication, but it wasn't effective. So I did some research online and found that "inability to control anger and aggression" had been identified as a condition that occurs in 1/3 of people who have had strokes, especially those with left brain strokes and aphasia, like my mother. The recommended treatment was the use of an SSRI anti-depressant. So I called the doctor back, he prescribed an SSRI, and, thank goodness, it seems to be helping. I'm so relieved. I know that my mother is pretty isolated, due to her severe aphasia, and I would hate to think of her spending her last years isolated even more by being unpleasant to those around her. I think it would help her outlook if our family members would keep in touch with her, and I wrote everyone an email to encourage them call or write her, but no one but my brother in Houston has done so. I just don't understand...

Sometimes it seems as if some people have so many relationships, that some become expendable. But the folks tossed aside may lose their only connections.

Links to my Helium articles

I am still off of work on short-term disability due to my back problems. So I've had a lot of time to pursue some of my interests, including writing on the Helium website. I hadn't been active on the site for some time, so, alas, a lot of my articles lost ground in the rankings due to my inactivity. I thought I'd post links to a couple of my pieces that pertain to disabilities, as they might be of interest to some of my readers here.

Parenting a handicapped child (for those who prefer "people first" language, keep in mind that on this site, the title is already chosen for the suggested topic!)

Autism: Why and how to treat toe-walking

And, by the way, I earn a small pittance when people link in.

A glimmer of hope

I have often bemoaned the fact that, after so many years of parenting, I felt like a failure in so many ways. Foremost among those failures was the fact that so few of my children seem to have absorbed the values I hold dear. But every once in a while, there is a small glimmer of hope that maybe, just maybe, something stuck.

My son Jesse has been going over to my mother’s every couple of weeks to give her a haircut, which both she and I have greatly appreciated. But this week Jesse came up with an idea that really blew me away. He said he wanted to go over to see Grandma every week, just to visit, but he was trying to think of something they could do together. I have to say I worry a lot about my mother and the fact that she has so little to do during the day. Her vision is so limited that she can’t read nor does she watch TV; in fact she got rid of both TV s after my dad died. She won’t participate in any of the activities at the center, mostly because she doesn’t think she can due to her vision. She is totally intimidated by even the simplest technology, eg, turning on her radio or pushing a speed dial button on her phone, so listening to audio books isn’t an option. Her main pastime used to be talking with folks, but since her stroke, she can’t even do that.

So Jesse was trying to think of something they could do together. Finally he said, “I was thinking I could read to her.” We started considering what he might read, and I suggested that if he could find a novel set in Oklahoma during the Depression, she would enjoy that. So we came up with “Where the Red Fern Grows” and “Remnants of Glory” as two possibilities. I think my mother will be thrilled. She will enjoy Jesse’s company immensely. He was always special to her, and even during his turbulent youth, she never lost hope that he would “straighten up and fly right.” She is proud that he is so intelligent and was always such a precocious child with an amazing vocabulary, and that he was such a good reader. So she will undoubtedly love listening to him read.

I am so pleased that Jesse came up with this plan…maybe something did stick, after all!

Been there, done that

Blogging has become a wonderful tool for parents of disabled kids. While exploring Blogger, I have discovered so many fascinating blogs where parents celebrate their kids’ achievements, grieve their losses, support other parents on their journeys, vent their frustrations with the medical and educational establishments. They have created a network of support that spans the globe.

With my kids all grown up and mostly on their own, I admit to having a feeling of “been there, done that” at times. I remember my outrage at insensitive or condescending doctors. I remember the ache I felt when my kid was left out or teased. I remember my sweet sense of victory when I successfully fought to have my daughter with severe cerebral palsy educated in regular classes (the first time our school district had mainstreamed a student with such severe disabilities). I remember my pride at accomplishments, big and small.

I also remember that we had it a bit tougher back then, just one generation ago. Accessibility was not yet the law of the land. I had to bump my kids’ wheelchairs up and down stairs hundreds of times. I often had to leave my daughter’s wheelchair outside the tiny restroom stall and carry her in. Most children had never encountered a child with disabilities in those pre-inclusion days, so we endured so many stares and hurtful comments. For that matter, most adults had had limited exposure to disabled kids, and I often had to challenge their stereotypes as well.

But, when I start feeling smug or patting myself on the back for being such a pioneer, I catch myself. Over the last year or so, I made the acquaintance of a woman whose daughter is my age (56) and has cerebral palsy. We have spent a lot of time reminiscing about the 50s and I am struck by how nonchalantly she talks about raising a child with disabilities in that time. She mentions her daughter‘s stint in Girl Scouts: “Of course, I had to be the leader so she could participate.” She talks about signing her up for dance lessons. She tells me matter of factly how her daughter had to manage the stairs at school on her crutches. She recounts how her daughter was almost not allowed to graduate from high school because she couldn’t participate in PE (finally the family doctor, who was on the school board, intervened and got them to allow her to substitute another elective). And she proudly talks about how her daughter went off to college about 300 miles away, with an adaptive bike her dad had made for her to get around campus. I am really in awe of this woman, who, by her own account, was just a “country girl,” who assumed her daughter would have a normal life and made sure that happened in an era when it wasn’t easy.

So, when I read these blogs by parents who have only been on this journey one year, four years, or nine years, I may initially have that “been there, done that” feeling. I may feel somewhat smug or amused: “What? They think they’re discovering something new?” But then I pull myself up short. Yes, they are discovering something new…something that’s new for them. And it’s in the discovery that it becomes real for them.

If only...

For three or four months I have watched Gabriel get worse and worse. In October the psychiatrist at MHMR took him off clozapine, the medication that is the “gold standard” in treating schizophrenia. Within a week, I knew it had been a mistake.

I called MHMR many times, telling them with rising desperation that Gabriel was getting worse by the day. Sorry, I was told, the doctor is booked, the doctor got sent to another clinic on the day he was supposed to see her, the doctor is on vacation for 3 weeks. Meanwhile, the voices became unbearable, the hallucinations were frightening, he paced and laughed for hours on end.

I took him to the psychiatric ER five times. He told them he saw aliens who were trying to kill him (and that sometimes he thought I was an alien); they sent him home. He told them the voices were bothering him a lot; they increased one of his medications and sent him home. He told them he was scared because the mafia was trying to kill him; they put him in the hospital at his request, but discharged him a week later without changing his medication. He told them he sometimes thought about stabbing himself in the head to make the voices stop; they changed his medication, told me to hide the knives, and sent him home. He told them he saw assassins, the mafia, and Jesus; they admitted him to the hospital as a voluntary patient.

Yesterday I learned that they had gotten an Order of Protective Custody, ie, he had been committed. He says that the doctor told him he will probably be sent to the state hospital next week.

I am so angry! If only the doctors at MHMR or the ER had listened to us, if only they had tried to understand how bad things were, if only they had acted to get him back on track early on! We would have been spared months of pure hell AND Gabriel wouldn’t have regressed to the point that he has to be committed.

Reconciled

She was

Unseen.

She knew that the people she met

Simply looked right through her,

As if she were invisible.

She was

Unheard.

Her humor, ideas, opinions

Were met with blank faces, ignored.

Soon she alone listened to her inner voice.

She was

Unknown.

Her darkest fears, her dearest dreams,

Remained unspoken, held within,

Nourished in her secret garden.

Unseen,

Unheard,

Unknown…

Yet somehow she was reconciled to this existence:

Better to be unseen than to only see outer appearance,

Better to be unheard than to speak nothing of substance,

Better to be unknown than to be an open blank book.

Bush's note

So George W Bush left a note in his desk for President Obama. I wonder what it said????

1/20/09 The day we've been waiting for

Tomorrow's the day. We will finally wake up from the nightmare of George W. Bush's two terms to a new day. Unfortunately it will take many, many years, if not decades, for this country to recover from the damage this man has done to our country. In my opinion, he almost managed to do what Osama bin Laden couldn't: destroy this great nation.

I will be glued to the TV to watch the inauguration. I expect that the greatest highlight of the celebration will be President Obama's inaugural address. The second greatest highlight, at least for me, occurred yesterday at the inaugural concert, when Pete Seeger led the crowd in "This Land is Your Land." At age 89, Pete's voice has faltered a bit, but his spirit is as strong as ever.

Back in the hospital

I'll keep this short, since I did another all-nighter with Gabriel at the psych ER last night...seven hours. They admitted him and are apparently going to try to get him back on clozapine, which is the medication that he really needs. I'll keep you all posted.

One minute

I left my camera on this morning and this is just one minute of video it captured. You may find it annoying. You may find it disturbing. You may find it very sad. However it makes you feel, keep in mind that it is only one minute.

Now, multiply that feeling times 60 minutes per hour, up to 12 hours per day, for much of the last 4 months. This is what Gabriel and I have been enduring all that time.

According to the doctors at MHMR, the psychiatric ER, and the inpatient hospital, this is an acceptable outcome for Gabriel. Six months ago he spent his time talking with me, researching stocks, downloading music, playing basketball, going to the movies. No one should have to spend their life like this!

Please help Gabriel go to Johns Hopkins!

Dear Friends,

I am asking for help from everyone I know to help Gabriel get to Johns Hopkins for a psychiatric consultation. If you've been reading my blog, you know that things have been very bad for Gabriel for several months, with very little help from the doctors here. I talked with a psychiatrist at Johns Hopkins today and he felt that a consultation there would be helpful.

I am currently on short term disability again, due to back problems. After missing a lot of work due to my heart attack, my mother's stroke, and Gabriel's condition, money is pretty tight right now. So any help towards reaching our goal would be greatly appreciated.

Here's the link to our fund raising site http://www.fundable.com/groupactions/groupaction.2009-01-12.5144311663/groupaction_view?portal_status_message=Your%20changes%20have%20been%20saved.

To Gabriel

At the bottom of my desk drawer, tucked inside an envelope, is a small collection of my favorite photos of you. Looking at them, I can’t help but smile. What a little imp you were: exuberant, mischievous, curious, happy.

Today those times seem very far away or as if they belonged to someone else. It seared my soul to hear you say that you sometimes want to stab yourself in the head to make the voices stop. I feel so helpless, unable to silence the voices or chase the visions back into the shadows. I would give anything to give you some peace.

Another night at the ER

Maybe the psych ER should just reserve two chairs for Galen and Gabriel in the waiting room. Monday night we spent yet another night there. Gabriel came to my room about 11 PM and said he needed to go back to the ER because the voices were really bad. By this point, I have become the devil's advocate when it comes to seeking "help" there. Once again I reminded him that when he's gone there before, with exactly the same complaint, they haven't done anything. I suggested that he put on his headphones and listen to the radio to drown out the voices, as he usually does. He said he'd try. A few minutes later, he was back, again complaining that the voices were really bad. As I had heard the doctors ask so many times, I asked him what the voices were saying. "They say they're going to kill me...or that I should kill myself." OK, I knew we had to go.

At the ER, the waiting room was full of folks with very tired faces. Listening to the general conversation, I learned that some of these people had been waiting since 2:00 that afternoon. Sigh...I knew it was going to be a very long night. It was a pretty typical crowd. There were a couple of middle aged ladies with teary eyes, a young woman with her boyfriend, a teenaged boy with his mother who compared experiences in prison with another ex-con in the next seat, an intense young man, a homeless man who apparently had just come to get out of the cold rainy weather to sleep someplace warm. For a while we had to deal with an obnoxious woman who had come with her sister and somewhat elderly father, announcing with dramatic flourish that she had come to commit herself. When she wasn't granted immediate entrance to the exam area and was told to fill out the required registration forms, she started complaining loudly in a string of obscenities. "F-ing fill out f-ing forms? No wonder people f-ing jump off f-ing bridges!!" A staff person at the window told her that they'd get to her in a few minutes. So she went downstairs to smoke a cigarette and, when she returned, she was outraged that they didn't take her right back to the exam area, and her ranting escalated, with her family members hovering around her, trying to calm her down. Far from being sympathetic, I was getting more and more irritated. I'm not a psychitrist, but after all these years of living with my kids and dealing with lots of psychiatric disorders, she struck me not as someone who was suicidal, but as someone who had borderline personality disorder, who was there for one simple reason: the drama. She wanted to stir up her family and she wanted the attention. Sitting there, knowing the severity of Gabriel's problems, I was further irritated that she was demanding to be seen ahead of him and all these other folks who had been waiting up to 10 hours. I finally couldn't stand it any longer and spoke up: "You know, other people have problems, too, and some of these people have been waiting since 2:00." Oops. All eyes were riveted on me, and the woman instantly turned her wrath and her obscenities on a new target. I thought she might come barrelling across the room for me. After several minutes of verbal assault, she left with dramatic flourish, shortly before two security officers showed up.

The rest of the night was uneventful. Several folks finally stretched out on the floor to sleep while they waited for their name to be called. By the time they called Gabriel back to see the doc, it was 6:30 AM and we were the only ones left in the waiting room. The effete resident doctor sat aloofly at his desk, reading through the notes from Gabriel's hospitalization last week. He asked Gabriel about the voices. He asked Gabriel if he felt like hurting anyone else: no. He asked him if he felt like hurting himself. I was stunned and frightened by his answer: "Yes, sometimes I think about stabbing myself in the head with a knife to make the voices stop." Now, a couple of weeks ago, I would have been outraged that they didn't think Gabriel should be hospitalized as a danger to himself or others, but, knowing how worthless the latest hospital stay had been, even in terms of observing his behavior and mental state, not to mention adjusting his medication, I accepted the decision to send him home. I did convince the doctor to try Gabriel on a first generation antipsychotic medication, and, with prescription in hand, we left.

Fortunately, as of Monday, I'm off work on short term disability due to my back problems, so I can observe Gabriel on the new medication. As I write this, he's had 2 doses of this med that he is to take 3 times/day, and he was actually talking with me a bit last night. So there is a glimmer of hope...

The best health care in the world?

"Seven years ago, the World Health Organization made the first major effort to rank the health systems of 191 nations. France and Italy took the top two spots; the United States was a dismal 37th. More recently, the highly regarded Commonwealth Fund has pioneered in comparing the United States with other advanced nations through surveys of patients and doctors and analysis of other data. Its latest report, issued in May, ranked the United States last or next-to-last compared with five other nations — Australia, Canada, Germany, New Zealand and the United Kingdom — on most measures of performance, including quality of care and access to it. Other comparative studies also put the United States in a relatively bad light. "-New York Times, August 12, 2007

Many Americans suffer under the delusion that our medical care is the best in the world. Maybe they're equating "most expensive" with "best." Perhaps they're talking about the care the wealthiest, best insured among us receive. Most assuredly they're not talking about the uninsured, the folks on Medicaid, the folks with chronic physical or mental illness, the people who happen to live in states where human services are a low priority. Anecdotal evidence might not give a complete picture, but it's a telling part of the whole...

First, there's Gabriel's continuing sad story. I convinced the hospital not to discharge him on Tuesday, when they had done absolutely nothing for him. I asked the doctor directly, "What was the point of his being there, then, if you weren't going to try to adjust his medication?" I also pointed out that Gabriel himself had asked to be admitted (since doctors seem never to read the charts, I thought this fact might have eluded the doc). He agreed to start Gabriel back on Clozaril. But Friday he called to say Gabriel had not tolerated the drug due to a high heart rate, so he'd taken him off it and was discharging him on the same medications he had been on when he was admitted. I was SO frustrated. I asked him, "So what you're saying is that he will have no life, that he will never be functional again?" The doctor assumed a condescending tone of voice and began lecturing me: "He'll never be normal, he'll never be able to hold down a job..." With great exasperation, I replied, "I KNOW that...how about just being able to carry on a conversation, or do something besides pace and laugh all day?"

Well, I ranted in my car all the way to the hospital and was sinking into despair the rest of the day. Saturday morning I got online and started researching antipsychotic medications and alternatives to Clozaril. I made two important discoveries. Gabriel takes an injectable form of Risperadol and an oral medication called Invega. It turns out that basically they are the same medication! As one article on the oral med was titled, "Invega-Can You Say Patent Extender?" No wonder the combination of the two meds isn't helping much...it's just a huge dose of a single medication, packaged differently. The second thing I discovered was actually some information I had caught in passing on NPR a couple of years ago. The NIMH did a clinical study of the efficacy of different second generation antipsychotics, but at the insistence of some scientists on the study committee, one first generaton antipsychotic medication was included in the study. Now it is a common belief among psychiatrists that the second generation drugs are far superior to the first, but in this study, a moderate dose of the first generation drug was found to be every bit as effective as the newer (more expensive) ones. Plus the old drugs don't have the same serious metabolic side effects as the new ones (weight gain, diabetes, high cholesterol, etc). So why have the old drugs fallen out of favor? According to that NPR report a couple of years ago, it boiled down to the aggressive marketing by the drug companies.

Anyway, if you've managed to read through all of that, the point is that I'm going to ask his doctor to try him on one of the older drugs. He's never been on one before, so maybe he'll do just as well, or better, and might be able to lose some weight and get the diabetes under control.

Second anecdote concerns that pain I've had in my legs for at least 4 years that has severely limited my activities. I used to walk a couple of miles several days a week, even jogged part of the way. Then this pain began, getting so bad when I walk or stand that by the time I walk around the grocery store, my legs are killing me and are numb and I have this tightness in my hips like spasticity. Over the last 4 years, I've become less active out of necessity, gained a lot of weight, developed diabetes, and had that heart attack. Meanwhile, I've been telling every doctor I've seen about this pain, hoping that they would find out what's wrong and do something to help me. One doctor wrote it off as diabetic neuropathy. My current doctor tested my segmental blood pressure, to make sure it wasn't PAD. When it wasn't, she stopped listening to my complaints. Last spring, when I took the boys to the arts festival, the pain and tightness in my legs was so bad, I thought I wasn't going to get back to the car! So the next time I saw the doctor, I asked her if she would order an MRI. I had done enough reading online by then, that I was pretty sure I had spinal stenosis. I had the MRI (she still didn't get it, ordering it because of "back pain" and wanting to check for a disc problem). When I finally got a hold of the nurse for the results, she told me the MRI just showed "normal wear and tear." Shortly thereafter I had the heart attack, so I never followed up with the doctor about the MRI, until the last time I went in. I finally thought to ask her, "Are you sure that MRI didn't show any signs of spinal stenosis?" She checked my chart and said, "Yes, it showed moderate spinal stenosis." I wanted to cry. After suffering this pain for 4 years, not to mention seeing my activities so limited and my health deteriorating, I had finally been diagnosed and the diagnosis had simply been filed away!

So, I did more research and found that 3 years ago the FDA approved a new, minimally invasive procedure for this condition that has given a lot of people back their mobility and their lives. Tomorrow I have an appointment with an orthopedist who does the procedure and am fervently hoping that he thinks I am a good candidate for it.

My point is this: if we have the best health care in the world, why did no one listen to me all those years while my health deteriorated and why did I have to ask for the MRI and why was I told that I just had "normal wear and tear" and why did I have to find the possible solution online and refer myself to an orthopedist? To those who oppose any changes to our health care system, just remember, it might be working for you, but for many folks, it isn't working. Some people are driving a Lexus or Escalade, but many others are driving an old jalopy, others are riding the bus, and millions have to walk.

Farewell, 2008!

As I look back on the year 2008, it would be easy to dwell on all the trials and tribulations. But since I’ve written at some length about the negatives, I’ll give you all a break and remember the good things that happened during the year.

Our second treeing walker coonhound, Boo, joined our family in March. Coming from a background of being abused and/or never being socialized in the first place, he has had a slow adjustment. He still cowers or slinks away when anyone enters the room, but has finally begun to approach me to be petted and will snuggle up next to me on the bed.

The election, of course, was a high point of the year. During the primary season, Texas actually was part of the process, for once, and the candidates made several appearances here. Gabriel and I went to Dallas for an Obama rally.

We watched election results at the rehab hospital with my mother, whose 90th birthday was on Election Day. We were all thrilled with the result.

I had hoped to be able to take the boys on a vacation this year, but with all our medical problems and expenses, it just didn’t work out. But we did have some fun times close to home:

A hike at Dinosaur Valley State Park…


The Main Street Arts Festival…


The Fort Worth Zoo.


Although my mother’s stroke was one of the storm clouds of the year, the silver lining was that I spent a lot of time with her and felt grateful that I could help her, give her support, and be her advocate.

And lastly, this confirmed dog lover fell in love with a stray cat, whom we named Mufasa. For several months he was our porch kitty and all of us, but especially Marcus, got very attached to him. About a month ago, I saw the body of an orange cat in the street a few blocks away, and feared the worst. Several weeks went by and we didn‘t see Mufasa, so I had to face the fact that the dead kitty must have been him. But then yesterday, I walked outside to go to work, and here came a cat walking down the street. At first I couldn’t believe it was Mufasa, but when I called his name, he came to me! We were so happy to have him back, safe and sound!

So, farewell to 2008 and welcome 2009. May the new year bring us health and happiness.

49th in the nation, indeed!

In case I haven't mentioned it in the last 5 minutes, Texas ranks 49th in the nation in per capita mental health spending. That should give you an indication of the quality of services in our great state. So I suppose I shouldn't have been outraged by the phone call I got today from the social worker at the psychiatric hospital, informing me that they would probably discharge Gabriel tomorrow.

Now, I went to visit him briefly yesterday. He was talking a bit more, so I asked him if he was feeling better. "No, not really," was his response. Keep in mind that this is the county's public hospital mental health stablization unit, not some private country club facility. Images of Bedlam come to mind. So it's fair to say that no one in their right mind (no pun intended) would choose to be there if they could get out. I would expect Gabriel to say that things were fine just to get back to his cigarettes, music, and fast food. So, if he says he's not better, he must really be having problems, that even HE can recognize.

So, when the social worker told me that he might be discharged tomorrow, I couldn't believe my ears. I asked her if they had adjusted or changed his medication. No, they hadn't. I told her that I would of course come pick him up if they let him go, but that I was quite sure things would be the same as they had been for the last 2 months: hell. I gave her an extensive rundown of the recent history regarding med changes and behavior, just as I had already given it to the ER doctor and the unit nurse.

What I really wanted to ask her was, "What the hell have you all been doing with him for the 4 days he's been there????" It dawned on me that every time I have asked the staff how he was doing, the answer was either (a) I haven't seen him much today, I guess he's been in his room, or (b) he hasn't had any behavior problems. In other words, he has mostly been withdrawn and hiding out in his room, hallucinating and feeling paranoid. Great...big help. At least at home I notice if he's agitated or hallucinating or firing imaginary guns at the aliens.

Psychotic Christmas

Our house is very quiet tonight...Gabriel was admitted to the hospital last night. For the first time in two months, there is not the sound of hysterical laughing, high-pitched gibberish, or pacing feet. I feel a bit guilty saying it, but the calm is something of a relief. Here is how it came about...

To say our Christmas was low-key would be putting it mildly. For only the second time since I adopted Jesse, we didn't have a tree. With all that's gone on this year and my recent bout of severe depression, the holiday season has hardly registered on my radar. So there were no lights, no stockings, no tree, no hullabaloo. Frenetically, I did my rather limited shopping (tight budget this year after missing so much work and still paying hospital bills) in the last two days.

So on Christmas morning, it was a far cry from Christmases past. When all the kids lived at home, we gathered around the den, passed out the gifts, and then went around the circle, opening one gift at a time. I had wanted the kids to take the time to admire and appreciate each gift. But with dwindling numbers, that tradition fell by the wayside. This year it was even less ceremonial, as Gabriel paced back and forth through the den and kitchen, opening a present, sometimes seeming to forget what he was doing. Soon it was time to get ready to go eat at my mother's center. Gabriel required frequent reminders to brush his teeth and put on some deodorant. I gave up on trying to get him to change clothes.

At my mother's we had a delicious buffet. The meal went fairly well, though we continue to get quite a few stares when we show up for a special meal. I guess we seem quite a spectacle to some of these old folks. Gabriel hardly spoke during the whole meal, of course, as he now rarely speaks to anyone unless it's to ask me to take him to some fast food place. At some point he left the table, and I figured he'd gone out front to pace in the parking lot and listen to his radio on the headphones (this is how he tries to drown out the voices).

Back home, he was withdrawn and morose. The laughing was gone, giving way to a very depressed state. He went from room to room, spending some time lying on Marcus' bed while Marcus watched TV, lying on my bed, sitting silently in my computer room while I worked and watched TV. He didn't interact, but seemed not to want to be alone. Much of the time, he sat with head in hands, the picture of misery. I asked him how he was doing, was he hearing voices, etc, but he flatly said he was OK.

But a few minutes later, about 11 PM, he came to my room and asked me to take him to the hospital. I admit that at first I was reluctant. He'd been to the psych ER 3 times in recent weeks and all they did was adjust his medication once and send him home. I figured it would be the same this time. But when he said "I'm scared," I decided he should go.

Amazingly, we were the only ones in the waiting room. I was relieved to see that the doctor who was there was the best one we've dealt with in the past, a very kind person I first met at the dog park a few years ago. He talked with Gabriel and with me, and I couldn't believe my ears when he said he was going to admit Gabriel and left to do the required paperwork. Gabriel had been in much worse shape during his previous visits, but had never been admitted. Then it dawned on me that the difference was that Gabriel himself had asked to come...it was a voluntary admission, not a commitment...at least for now.

I didn't go see him today. I felt bad about that, but for one thing, I knew we would just sit there in silence while he hallucinated, and for the other thing, I was afraid that if I went he would want to leave with me and, since he's there voluntarily, they'd have to let him go. I'll go for a short visit tomorrow, probably, and take him some clothes and toiletries. But today I took advantage of the quiet and calm to unwind from the tension of the last two months. Aaaaaahhhhhhh.....

Храмы России

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Translation:

On the serene holiday of Christmas
Candles flare up, bells call out
The time of meeting.
Again the distant star
Points the way,
But each one seeks
His own path to the cathedral.
In cathedrals of Russia, on Christmas evening,
We are healed by the spirit of highest hope.
Cathedrals of Russia…love and redemption
And the first contact with Eternity.
In the hour of doubt and trouble you hear
Those words which were given
To us from on high.
On Christmas you open
The doors of the cathedral,.
The triumph of shining faith
Will be with us.
In cathedrals of Russia, on Christmas evening,
We are healed by the spirit of highest hope.
Cathedrals of Russia… love and redemption
And the first contact with Eternity.

I'm not sure what Christmas means to me anymore. I would say I have no faith at this time in my life. It is simply too difficult for me to reconcile the idea of a loving, omnipotent God with the suffering of good people and innocent children.

And, yet, there is something within me that is moved by the spirit of the day. Strains of certain carols stir deep emotion. The message of hope, peace, and goodwill still resonates. In the song above, I love the verse which says "Again the distant star points the way, but each one seeks his own path to the cathedral."

Perhaps I am lost, but perhaps I am simply on a very long detour or a rugged path through the wilderness or wandering in the dark of night...

Oxymoron of the Day

And the Oxymoron of the Day is: Reality Television.

While we all could think of hundreds of examples, no doubt, I learned of an outstanding example yesterday. In a blog entry last January, I mourned the passing of my friend Phyllis. Her story in a nutshell: she and her husband Darrell created and raised a large family together, 24 children, some biological, some adopted. Most of the adopted children were considered special needs because of physical or emotional disabilities. In 1995 tragedy struck, when Darrell died unexpectedly of a heart attack. Phyllis, instantly a single parent, did an amazing job of rearing her children. But several years ago, she developed pronounced weakness in her arms and legs and was eventually diagnosed with ALS. She passed away last January. One of the grown children returned to the family home to care for the disabled and minor children who remained at home.

Yesterday I ran into a member of Phyllis’ church, who told me that the church had applied to the “reality” show Extreme Makeover: Home Edition in the family’s behalf. You see, the family lives in a 1970s vintage home, built on 3 levels, which makes it very difficult when they’re caring for 2 young adults with severe physical disabilities in wheelchairs. From this woman’s report, Extreme Makeover gave serious consideration to the application, but in the end, rejected the project. And why was it rejected? Because the family's story didn’t have a “happy ending” and was too “depressing.”

So much for “reality” television…

The flood

Well, it finally happened. I had a major meltdown this week. I suppose it was bound to happen, sooner or later. I mean, the stress has pretty much been unending all year: Marcus’ two surgeries and his slow recovery, the bad evaluation I got at work in June, my heart attack in July, my angioplasty in August, Gabriel’s deteriorating condition since September, my mother’s stroke in October, the financial hit of missing so much work and paying medical bills. Through it all, I’ve been quite depressed, but have shed very few tears…until this week. Once the dam was breeched, the trickle of tears became a flood that lasted well over 12 hours.

So what was the straw that broke the camel’s back? (I know I’m mixing metaphors, but I guess my brain is still drying out.) Since it involves work, I can’t go into too many details, but the bottom line was this: I was disrespected. My professional opinion to discharge a patient was questioned and the company is sending another therapist in to re-evaluate the patient and give a second opinion. Never mind my 30 years of experience in the field…I have someone second guessing my professional judgment. I wish I could quit, but the reality of needing to stay with this company so I qualify for health insurance and FMLA (and maybe long term disability) overrides my self-respect.

She saw her life like this::
A stone was thrown into a tranquil pond,
And gentle concentric ripples
Spread in ever-widening circles.
Then, reaching the barrier of the shore,
The waves, now weaker, reversed direction,
And the circles began to shrink
Until the crossing waves died completely,
And once again the pond, so still, reflects
The golden light of the setting sun.

As good as it gets

Incredible. Tonight Gabriel’s giddiness turned to moroseness. As we sat at the kitchen table, eating supper, he kept looking at me intently. If you ever saw Charlie Chaplin’s Gold Rush, it was reminiscent of the scene in which Charlie and a gold rusher were snowed in in a mountain cabin, without food. The gold rusher stares intently at Charlie, hallucinating that he’s a giant chicken…supper! That’s how Gabriel was staring at me. I started asking him if he were hearing things. Yes, voices. Did they tell him to do bad things? Yes, no. Was he seeing things? Yes, aliens. What were they doing? Trying to kill him. When you look at me, what do you see? Sometimes I see an alien.

That was it. Time to head back to the psych ER. I have to admit it scared me that he thought I was an alien, who was trying to kill him. I thought they would keep him at the hospital. I thought wrong. They STILL don’t think he’s a danger to himself or others, so they sent him home. Matter of factly, they stated that no drug is comparable to Clozapine, but he can’t take it now because of the white blood count, so although they increased his other medication, I shouldn’t expect his delusions and hallucinations to be controlled.

This, apparently, is as good as it gets.

Update: Hanging on

It’s been a while since I’ve posted a blog here. I’ve been short of time, energy, and inspiration. But thought I’d write the obligatory update:

My mother got out of the hospital on Nov 21st, about a month after she had the stroke. I’m pleased to report she was able to return to her own apartment at the independent living center, initially with a 24 hour/day assistant. But she is doing so well and needs so little assistance that we’ll end the 24 hour service at the end of this week and just pay for an aide at the center to help her with laundry and a few other small tasks. Her language is still severely impaired, so she has a home health speech therapist working with her three times a week. Everyone who has worked with her (aside from the jerks at Healthsouth) have commented on what a tough lady she is. Yep, that’s my mother.

While making daily trips to the hospital and getting things arranged for Mother’s return home, I’ve also been nursing my coonhound Boo through a serious injury. In my backyard I had a piece of lattice held up with two metal stakes. Foolishly, I never considered them a hazard. One day I came home from the hospital and noticed that Boo was awfully quiet and just lying by my desk. After an hour or so, I looked over at him more closely and saw that he had a huge gash on his side, about 8 inches long and gaping almost 2 inches wide! I finally figured out that he must have tried to jump over the little lattice fence, which he has done hundreds of time, and must have missed the jump and come right down, catching his side on the metal stake. So off we went to the 24 hour animal emergency clinic, where he had to be put out and stitched up. In spite of having an e-collar and antibiotics, the wound got infected and most of the stitches pulled out. So we just had to let the wound fill in. Poor Boo. In addition to the pain, he had to suffer the humiliation of wearing the e-collar (he’s heard every satellite dish, lampshade, and conehead joke in the book) and a white t-shirt to keep the wound covered. I’m relieved to report the wound is finally almost healed.

And then there’s the worsening situation with Gabriel. He has been taking his medication, but due to high white blood cell counts, he had to be taken off of Clozapine (the “gold standard” medication for schizophrenia). It’s obviously the one he needs, because since they took him off it, Gabriel has deteriorated fast. For the last month, Marcus and I have listened to up to 20 hours a day of hysterical laughing and constant pacing. At this point, I probably should be committed myself! I have been calling MHMR for more than a month, begging for them to get Gabriel in to see the doctor, but she wasn’t even there the last time he was scheduled to see her, and won’t be back at the clinic until Dec 12. I must admit, I’m feeling pretty hopeless right now. From the reading I’ve done, it appears that there really isn’t an effective alternative to Clozapine, not to mention that the type of schizophrenia Gabriel has is the most resistant to treatment and the one with the worst prognosis.

Sometimes it’s really hard to keep hanging on…

Even more shameful

Well, it just goes from bad to worse. I thought that my mother would get good care at Healthsouth Rehabilitation Hospital and would be on the road to recovery from her stroke. WRONG! She was there about 5 days and during that time, she seemed to get worse. She looked haggard, developed a pronounced tremor, moaned constantly, seemed agitated much of the time. The physical therapy assistant told my brother that my mother seemed not to know where she was, this on the same day that Mother had managed to communicate to me that she didn’t think the hospital was helping her, that she wasn’t getting what she needed. The PT assistant also said he felt that, after discharge, she would need 24 hour in-home care or a nursing home. Well, the next day I got a call that my mother had collapsed and had been rushed back to the ER.

It turns out that Healthsouth allowed my mother to become seriously dehydrated, causing her blood pressure to drop to a critically low level. It’s absolutely outrageous that someone who was dependent on others to get her water would be allowed to become that dehydrated in a HOSPITAL! Outrageous and disgraceful and shameful!

My mother was taken to the ER at the hospital where she was a patient right after the stroke (the one that didn’t give her dinner) because it was right across the street from Healthsouth. When it was determined that she needed to be admitted, I insisted that she be transferred to a hospital in Fort Worth, part of the Baylor system. She has been there for 2 days and her condition has improved 1000%. The nursing and therapy staff have been so kind to her, are provided attentive care, and actually talk to and listen to her. I’m much more hopeful tonight that my mother will be able to return to independent living, with some home health services.

Shameful

Last night when I went to visit my mother about 8:00, I found her quite angry. The words (and non-words) flew out of her mouth, and I finally understood that she was telling me that she hadn’t had any supper. When the nurse came in, I asked her about that. With a smile and a condescending voice, she told me, “Oh, she had dinner.” Mother was adamant that she hadn’t eaten, and the nurse finally brought her some thickened milk, all the while insinuating that my mother was confused and had just forgotten that she had eaten. I had my doubts. In spite of her inability to express herself, she is quite oriented and knows exactly what’s going on. On several occasions, she has conveyed information to me accurately, for example, about the results of her swallow study, about the plans to transfer her to a rehab hospital, etc.

When I got to the hospital this evening at 6:30, Mother had just finished feeding herself supper, even though she is supposed to have one-on-one assist, and her bed was fully reclined, even though she is supposed to be sitting straight up while eating. No one had showed up to help her, so she just ate. I figure what happened last night was that dietary brought her dinner and put it on the bedside tray out of reach, and after no one came to help her, dietary just came and picked her tray back up, uneaten. I raised a ruckus, and I don't think it will happen again, especially now that the staff understands that, even though they don't understand Mother, she can make me understand and can complain to me! How easy (and shameful) it is for some folks to shirk their jobs and then use the "she is confused" defense!

Regret

In the movie “Saving Private Ryan,” there is a memorable scene in which the young medic is sitting in a deserted church on a rainy night, writing a letter to his mother. Quietly, poignantly, he tells his comrades about how his mother would come home late at night from work, eager to talk with him about his day, but sometimes he would just pretend to be asleep, so he wouldn’t have to talk with her. Staring wistfully into the night and with puzzlement in his voice, he says, “I don’t why I did that…”

I suppose that for many of us that moment of realization comes too late. When we’re young and full of ourselves, our parents lives seem dull, their opinions irrelevant, their concerns laughable. As we grow older, our own concerns fill our thoughts: work, bills, our own kids and their problems. And as our parents become elderly, we sometimes, in spite of ourselves, grow a bit impatient with them…with their ever-present worries about their health, with repetitious stories about people we don’t know, with their complaints. In spite of our good intentions, we may call or visit them less frequently.

And then it is too late. In a matter of seconds, with a swift stroke of cruel fate, simple, familiar communication is severed. Words still flow, but they are scrambled, incomprehensible, disconnected, clanging/banging/changing. Communication, of necessity, occurs at a different level, and somehow, we understand. What wouldn’t we give now to hear the familiar sayings, the easy chit-chat, even the complaints?

Like that young medic in a darkened church, we remember all those times we pretended to be asleep, and wonder, “I don’t know why I did that…”

Stroke

It wasn’t THE phone call I dread…but it was close. Early this morning I was awakened by a call from a staff person at my mother’s independent living center, informing me that, when Mother was in the dining room for breakfast, she had been unable to get up from her chair and was having trouble putting words together. Inexplicably, they did not call for an ambulance, but simply took her to her apartment. I drove over to her place and my heart stopped when I knocked on the door several times and there was no answer. The door was unlocked and I went in, holding my breath. Mother was in her bed, but roused when I called her name. But the words that came out of her mouth were gobbledygook. I took her to the nearest ER and she was admitted with a diagnosis of a stroke.

Luckily her motor abilities seem more or less intact…she even put her shoes on and tied them before moving from the ER to her hospital room. She also seems to understand everything that is said to her. But she is unable to express any thought coherently.

She not only is dealing with the frustration of being unable to communicate, but has been dealing with the additional frustration of the staff treating her as if she is demented. I was dismayed to see this assumption from folks working on a stroke unit. If I hear one more nurse comment that Mother seems “confused,” I may scream! I went home for a couple of hours this afternoon, and when I returned the nurse informed me that Mother seemed confused and had tried to get out of bed. I talked to her for a while and was finally able to understand that she needed to go to the restroom (desperately). That is why she had tried to get out of bed, but no one had even tried to figure that out! I made sure before I left the hospital tonight to inform the nurse that Mother understands quite well and is simply having expressive language problems.

In what was basically a depressing day, there was one moment of humor. When the ER staff was trying to determine whether Mother was oriented, they were running through the standard questions: what day is it, what year is it, where are you? When they came to the question, “Do you know who’s the President of the United States?”, Mother got an angry look on her face and proceeded to give them an earful! None of it was understandable, but her intent was clear. The one coherent word was “Change.”

The empty page

The empty page stares back at me with silent reproach,
Seeming to whisper:
Say something!
Speak from the heart!

But my mind, my soul seem as blank as the page,
Mumbling in defense:
Nothing to say…
My heart grows tired…

Once I wrote with passion about joy and pain:
Madness and grief,
Children and regret,
Death and sorrow,
Nature and wonder,
Dreams and hope.

But now only muffled echoes linger on,
Fading to silence:
Without emotion…
Waiting for stillness.

Catching up

I’ve been absent from Blogger for a while, so thought I’d write a wrap up of the last few weeks.
After Gabriel’s trip to the ER, he did start taking his meds again, but it has taken a long time for him to reorganize after this major episode. Even now, he still has not regained his previous level of function. I fear that this is how it will be…that each episode will result in some degree of permanent deterioration. If I wake up in the middle of the night, I still hear him laughing for no reason. His short term memory is terrible; he forgets things after a day or, sometimes, after only a few hours. But at least he’s socializing with us again and joking a bit.

I often go online to research which states offer the best mental health services, with the hope of moving someday. But I had not really considered the possibility that there might be non-governmental programs that might meet his needs. I have now discovered the “Clubhouse” movement for folks with mental illness, which provides a center for vocational and social programs, structured around the “work ordered day.” There are such programs throughout the US and around the world, but the one that most interests me is the one in St Louis, which is one of four US training sites for the movement. I am really excited about the program and, if all goes well, I’d like to relocate to St Louis at some point so Gabriel would be able to participate.

After Gabriel stabilized, I returned to work. I’ve been working my butt off, catching up and evaluating new patients. It was pretty hard to get back into the work routine after such a long time off (I miss those long afternoon naps!), but I’m doing OK now that the evaluations are complete and I’m caught up on paperwork. My previous bitter feelings about work have receded…getting a nice profit sharing check and a raise did wonders for my attitude! Given the current economic crisis that grips us, I feel quite fortunate to have a career that is not really impacted by the economic downturn.

A situation this week has set me thinking about some of the values we hold. I’m thinking about those values that are relatively easy or clear cut in a general sense, but which are challenged when a personal situation throws them up in our face. For example, one might be opposed to the death penalty, until the murder of a family member challenges that long held position. One might be theoretically opposed to abortion…until a loved one becomes pregnant after a rape. And so this week my firm belief in the rights of the disabled met a challenge. I discovered that my daughter who is severely disabled is pregnant. This young woman cannot take care of any of her own personal needs. She is totally dependent on others to feed her, dress her, take her to the bathroom, get her in and out of bed, etc. As a parent and as a therapist, I have long advocated that people with disabilities be allowed and enabled to lead normal lives. But this situation has definitely challenged that ideal.

On a lighter note, we now have a porch kitty. I’ve never been much of a cat lover, but this pretty stray kitten had been wandering the neighborhood for a few weeks, digging in the garbage for food. So I put some food out for him, and that was that. His name is Mufasa. He’s what I call a “dog kitty,” ie, a cat that acts more like a dog than a cat.

To the ER...and back

I finally took Gabriel to the psychiatric ER yesterday. After 48 hours of constant hysterical laughing, I figured it was time. After four hours in the waiting room, we got to see the doctor. As I expected, he said they couldn’t keep Gabriel there, because he wasn’t a danger to himself or others. Gabriel did agree to take his medication, which we now have to build up gradually again, along with weekly blood work.

And once again, I have the worry of missing work. I was just released by the cardiologist to return to work this week, but I’ve stayed home because I don’t think it’s safe to leave Gabriel unsupervised in his current state. I’m taking it as unpaid FMLA. But, in spite of the HR director’s assurance to me a few months ago that time missed due to FMLA doesn’t count against me, when I talked with the owner of the company last week, he brought up the visit quota required to maintain eligibility for benefits. Oh, great! Now I have the additional stress of worrying about whether I’ll lose my health insurance!

Ah, for blissful ignorance!

“Wish I didn’t know now what I didn’t know then…”

I often think of that line from Bob Seger’s song “Against the Wind.” How well it expresses a sense of lost innocence…a feeling I’ve frequently experienced over the years, as I dealt with situations that I would rather never have even known about. The harsh reality of schizophrenia definitely falls into that category.

I wish I never knew the heartbreak of watching someone you love become a stranger. I wish I didn’t know about how this disorder can rob someone of emotion and of cognitive abilities. I wish I didn’t know about having to choose between madness and medication that makes a person sleep ¾ of their life away, gain weight, develop diabetes. I wish I didn’t know about the frustration of seeing someone not receive the services they need to get better. I wish I didn’t know the pain of seeing someone have such a small semblance of normal life: no friends, no job, no particular reason to get out of bed.

And now I’m learning even more about what I don’t want to know. I’ve never really lived with Gabriel when he’s been actively psychotic. I mean, for many years, he had the diagnosis, but the symptoms were minimal…mainly just some skewed thinking. When he had his first major psychotic episode, it came on very suddenly. Over the course of a weekend, he was somewhat moody and withdrawn, and then in one fell swoop, he was in a full-blown psychotic state: delusional, paranoid, hallucinating. I took him to the ER and he was in the hospital for 7 months, with only one 24 hour period when they made the mistake of furloughing him home. So I’ve never really dealt with him at home in this state, until now.

He stopped taking his medication about a month ago and is progressively getting worse every day. He sits in front of the TV while he’s awake, only getting up to eat when I directly tell him to eat and I put his food on the table for him. He rarely responds to me when I say something to him. He is obviously hallucinating, staring and watching unseen things constantly. He stays awake for 48 hours at a time. On Saturday, I thought it might be good for him to get out of the house, so I asked the boys if they wanted to go out to eat. It took 15 minutes for Gabriel to put his shoes on…he rummaged through the laundry basket, stared into space, looked out the window, muttered “I’m looking for, I’m looking for, I’m looking for…” Even after I handed him his shoes and socks, with a direct order to put them on, it took about 5 minutes for him to do it. At the restaurant, he couldn’t keep his mind on things long enough to decide what he wanted…I finally ordered for him. And the day before yesterday he started that constant maniacal laughing that was one of his symptoms during his last episode…we endured about 24 hours of it before he finally fell asleep last night.

Reading this, you may be wondering why I haven’t taken him to the hospital. I figure there’s no point right now. They will only admit him if he’s considered to be a “danger to himself or others.” So if I took him now, all they would do would be to tell him to take his medication and send him home. So I have to wait until the overt paranoia kicks in. Meanwhile I’m on pins and needles, not knowing quite what to expect.

In our best interest

Well, once again the GOP is going after the "liberal media." How dare the press ask questions about Sarah Palin? I mean, just because she's going to be a heartbeat away from the presidency, with a 72 year old President with a history of recurring cancer, they seem to think that the American public should know something about this VP candidate! Never mind that Palin has asked "what is it exactly that the VP does every day?" Never mind that Palin admits "I haven't really focused much on the war in Iraq." Never mind that some voters actually think that they need to learn more about her views than what was contained in a convention speech written by others. Rick Davis, McCain campaign strategist, obviously doesn't think the American people need to know any more. Here's his opinion on the matter, as expressed to Joe Scarborough on MSNBC:

SCARBOROUGH: Yesterday Nicole Wallace suggested that she was sitting right
there and told Jay Carney of Time magazine ‘Sarah Palin doesn’t have to talk to
you, she doesn’t’ have to talk to the press.’ … Can we expect Sarah Palin on
Meet the Press and other one on one interviews throughout the course of this
campaign?
DAVIS: We’re going to do whatever we think is the best to win. We
have 60 days left and if we think it’s a good idea to go out there and do those
shows, we’ll do them.
SCARBOROUGH: Can you avoid it? Meet the
Press?
DAVIS: We can afford anything we want to do. … We’re going to do what
we think is in our best interest. If that means access to the press, we’ll give
it to you.

Did you get that? OUR best interest? Forget "Country First"...now it's "Campaign First."

So the McCain campaign obviously doesn't think we need to know anything about the person McCain picked to be VP. Heck, I guess they think if they didn't ask these questions themselves when they vetted her for all of a day, we shouldn't be interested, either. After all, she passed what is apparently John McCain's primary qualification for any female in his life: she was a former beauty queen.

So, if McCain didn't really find out much about her and won't let her talk to the media, apparently we have to look elsewhere for information about Palin. A good place to start is an email from a longtime Wasilla resident, Anne Kilkenny, who has followed local politics closely for many years.

The Anne Kilkenny Email: ABOUT SARAH PALIN

I am a resident of Wasilla, Alaska. I have known Sarah since 1992. Everyone here knows Sarah, so it is nothing special to say we are on a first-name basis. Our children have attended the same schools. Her father was my child's favorite substitute teacher. I also am on a first name basis with her parents and mother-in-law. I attended more City Council meetings during her administration than about 99% of the residents of the city.

She is enormously popular; in every way she’s like the most popular girl in middle school. Even men who think she is a poor choice and won't vote for her can't quit smiling when talking about her because she is a "babe".

It is astonishing and almost scary how well she can keep a secret. She kept her most recent pregnancy a secret from her children and parents for seven months.

She is "pro-life". She recently gave birth to a Down's syndrome baby. There is no cover-up involved, here; Trig is her baby.

She is energetic and hardworking. She regularly worked out at the gym.

She is savvy. She doesn't take positions; she just "puts things out there" and if they prove to be popular, then she takes credit.

Her husband works a union job on the North Slope for BP and is a champion snowmobile racer. Todd Palin’s kind of job is highly sought-after because of the schedule and high pay. He arranges his work schedule so he can fish for salmon in Bristol Bay for a month or so in summer, but by no stretch of the imagination is fishing their major source of income. Nor has her life-style ever been anything like that of native Alaskans.Sarah and her whole family are avid hunters.

She's smart.Her experience is as mayor of a city with a population of about 5,000 (at the time), and less than 2 years as governor of a state with about 670,000 residents.During her mayoral administration most of the actual work of running this small city was turned over to an administrator. She had been pushed to hire this administrator by party power-brokers after she had gotten herself into some trouble over precipitous firings which had given rise to a recall campaign.

Sarah campaigned in Wasilla as a "fiscal conservative." During her 6 years as Mayor, she increased general government expenditures by over 33%. During those same 6 years the amount of taxes collected by the City increased by 38%. This was during a period of low inflation (1996-2002). She reduced progressive property taxes and increased a regressive sales tax which taxed even food. The tax cuts that she promoted benefited large corporate property owners way more than they benefited residents.The huge increases in tax revenues during her mayoral administration weren't enough to fund everything on her wish list though, borrowed money was needed, too. She inherited a city with zero debt, but left it with indebtedness of over $22 million. What did Mayor Palin encourage the voters to borrow money for? Was it the infrastructure that she said she supported? The sewage treatment plant that the city lacked? or a new library? No. $1m for a park. $15m-plus for construction of a multi-use sports complex which she rushed through to build on a piece of property that the City didn't even have clear title to, that was still in litigation 7 yrs later; to the delight of the lawyers involved! The sports complex itself is a nice addition to the community but a huge money pit, not the profit-generator she claimed it would be. She also supported bonds for $5.5m for road projects that could have been done in 5-7 yrs without any borrowing.While Mayor, City Hall was extensively remodeled and her office redecorated more than once.These are small numbers, but Wasilla is a very small city.

As an oil producer, the high price of oil has created a budget surplus in Alaska. Rather than invest this surplus in technology that will make us energy independent and increase efficiency, as Governor she proposed distribution of this surplus to every individual in the state.In this time of record state revenues and budget surpluses, she recommended that the state borrow/bond for road projects, even while she proposed distribution of surplus state revenues: spend today's surplus, borrow for needs.

She's not very tolerant of divergent opinions or open to outside ideas or compromise. As Mayor, she fought ideas that weren’t generated by her or her staff. Ideas weren't evaluated on their merits, but on the basis of who proposed them.

While Sarah was Mayor of Wasilla she tried to fire our highly respected City Librarian because the Librarian refused to consider removing from the library some books that Sarah wanted removed. City residents rallied to the defense of the City Librarian and against Palin's attempt at out-and-out censorship, so Palin backed down and withdrew her termination letter. People who fought her attempt to oust the Librarian are on her enemies list to this day.

Sarah complained about the "old boy's club" when she first ran for Mayor, so what did she bring Wasilla? A new set of "old boys". Palin fired most of the experienced staff she inherited. At the City and as Governor she hired or elevated new, inexperienced, obscure people, creating a staff totally dependent on her for their jobs and eternally grateful and fiercely loyal; loyal to the point of abusing their power to further her personal agenda, as she has acknowledged happened in the case of pressuring the State's top cop (see below).

As Mayor, Sarah fired Wasilla's Police Chief because he "intimidated" her, she told the press. As Governor, her recent firing of Alaska's top cop has the ring of familiarity about it. He served at her pleasure and she had every legal right to fire him, but it's pretty clear that an important factor in her decision to fire him was because he wouldn't fire her sister's ex-husband, a State Trooper. Under investigation for abuse of power, she has had to admit that more than 2 dozen contacts were made between her staff and family to the person that she later fired, pressuring him to fire her ex-brother-in-law. She tried to replace the man she fired with a man who she knew had been reprimanded for sexual harassment; when this caused a public furor, she withdrew her support.

She has bitten the hand of every person who extended theirs to her in help. The City Council person who personally escorted her around town introducing her to voters when she first ran for Wasilla City Councilbecame one of her first targets when she was later elected Mayor. She abruptly fired her loyal City Administrator; even people who didn’t like the guy were stunned by this ruthlessness.Fear of retribution has kept all of these people from saying anything publicly about her.

When then-Governor Murkowski was handing out political plums, Sarah got the best, Chair of the Alaska Oil and Gas Conservation Commission: one of the few jobs not in Juneau and one of the best paid. She had no background in oil & gas issues. Within months of scoring this great job which paid $122,400/yr, she was complaining in the press about the high salary. I was told that she hated that job: the commute, the structured hours, the work. Sarah became aware that a member of this Commission (who was also the State Chair of the Republican Party) engaged in unethical behavior on the job. In a gutsy move which some undoubtedly cautioned her could be political suicide, Sarah solved all her problems in one fell swoop: got out of the job she hated and garnered gobs of media attention as the patron saint of ethics and as a gutsy fighter against the "old boys' club" when she dramatically quit, exposing this man’s ethics violations (for which he was fined).

As Mayor, she had her hand stuck out as far as anyone for pork from Senator Ted Stevens. Lately, she has castigated his pork-barrel politics and publicly humiliated him. She only opposed the "bridge to nowhere" after it became clear that it would be unwise not to.

As Governor, she gave the Legislature no direction and budget guidelines, then made a big grandstand display of line-item vetoing projects, calling them pork. Public outcry and further legislative action restored most of these projects; which had been vetoed simply because she was not aware of their importance; but with the unobservant she had gained a reputation as "anti-pork."

She is solidly Republican: no political maverick. The State party leaders hate her because she has bit them in the back and humiliated them. Other members of the party object to her self-description as a fiscal conservative.

Around Wasilla there are people who went to high school with Sarah. They call her "Sarah Barracuda" because of her unbridled ambition and predatory ruthlessness. Before she became so powerful, very ugly stories circulated around town about shenanigans she pulled to be made point guard on the high school basketball team. When Sarah's mother-in-law, a highly respected member of the community and experienced manager, ran for Mayor, Sarah refused to endorse her.

As Governor, she stepped outside of the box and put together of package of legislation known as "AGIA" that forced the oil companies to march to the beat of her drum.Like most Alaskans, she favors drilling in the Arctic National Wildlife Refuge. She has questioned if the loss of sea ice is linked to global warming. She campaigned "as a private citizen" against a state initiative that would have either a) protected salmon streams from pollution from mines, or b) tied up in the courts all mining in the state (depending on who you listen to). She has pushed the State’s lawsuit against the Dept. of the Interior's decision to list polar bears as threatened species.

McCain is the oldest person to ever run for President; Sarah will be a heartbeat away from being President.There has to be literally millions of Americans who are more knowledgeable and experienced than she.However, there's a lot of people who have underestimated her and are regretting it.

CLAIM VS FACT
"Hockey mom": true for a few years
"PTA mom": true years ago when her first-born was in elementary school, not since
"NRA supporter": absolutely true
Social conservative: mixed. Opposes gay marriage, BUT vetoed a bill that would have denied benefits to employees in same-sex relationships (said she did this because it was unconsitutional).
Pro-creationism: mixed. Supports it, BUT did nothing as Governor to promote it.
"Pro-life": mixed. Knowingly gave birth to a Down's syndrome baby BUT declined to call a special legislative session on some pro-life legislation.
"Experienced": Some high schools have more students than Wasilla has residents. Many cities have more residents than the state of Alaska. No legislative experience other than City Council. Little hands-on supervisory or managerial experience; needed help of a city administrator to run town of about 5,000.
Political maverick: not at all
Gutsy: absolutely!
Open & transparent: ??? Good at keeping secrets. Not good at explaining actions.
Has a developed philosophy of public policy: no
"A Greenie": no. Turned Wasilla into a wasteland of big box stores and disconnected parking lots. Is pro-drilling off-shore and in ANWR.
Fiscal conservative: not by my definition!
Pro-infrastructure: No. Promoted a sports complex and park in a city without a sewage treatment plant or storm drainage system. Built streets to early 20th centurystandards.
Pro-tax relief: Lowered taxes for businesses, increased tax burden on residents.
Pro-small government: No. Oversaw greatest expansion of city government in Wasilla’s history.
Pro-labor/pro-union. No. Just because her husband works union doesn't make her pro-labor. I have seen nothing to support any claim that she is pro-labor/pro-union.

WHY AM I WRITING THIS?
First, I have long believed in the importance of being an informed voter. I am a voter registrar. For 10 years I put on student voting programs in the schools. If you google my name (Anne Kilkenny + Alaska), you will find references to my participation in local government, education, and PTA/parent organizations.

Secondly, I've always operated in the belief that "Bad things happen when good people stay silent". Few people know as much as I do because few have gone to as many City Council meetings.

Third, I am just a housewife. I don't have a job she can bump me out of. I don't belong to any organization that she can hurt. But, I am no fool; she is immensely popular here, and it is likely that this will cost me somehow in the future: that’s life.

Fourth, she has hated me since back in 1996, when I was one of the 100 or so people who rallied to support the City Librarian against Sarah's attempt at censorship.

Fifth, I looked around and realized that everybody else was afraid to say anything because they were somehow vulnerable.

CAVEATS
I am not a statistician. I developed the numbers for the increase in spending & taxation 2 years ago (when Palin was running for Governor) from information supplied to me by the Finance Director of the City of Wasilla, and I can't recall exactly what I adjusted for: did I adjust for inflation? for population increases? Right now, it is impossible for a private person to get any info out of City Hall; they are swamped. So I can't verify my numbers.You may have noticed that there are various numbers circulating for the population of Wasilla, ranging from my "about 5,000", up to 9,000. The day Palin’s selection was announced a city official told me that the current population is about 7,000. The official 2000 census count was 5,460. I have used about 5,000 because Palin was Mayor from 1996 to 2002, and the city was growing rapidly in the mid-90’sAnne KilkennyAugust 31, 2008

Beast

And so the beast returns,
Wrapping sinister tendrils
Around a vulnerable mind,
Whispering insistently,
Mocking, threatening.
Damping down all emotion,
Slowing movement and thought,
Walling off the world outside,
Loosing wolves inside the walls.