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.

Stop! I want to get off!

I remember when I was a kid and I’d go to a playground on a sunny fall day. Now this was in the days before fancy “playscapes” and lawsuits. Every playground featured pretty much the same four pieces of equipment. There were swings on which you could swing so high you thought you might defy gravity and go completely over the top bar, and you wondered if centrifugal force would keep you in your seat. There were rickety teeter-totters, on which you quickly became a fair judge of balance, mass, and fulcrums, after either landing with a spine jarring thud or being stuck up in the air, feet dangling. There was the tall metal slide, surrounded by earth so compacted by years of play that it was hard as concrete; we first went down on a sheet of waxed paper a few times to make it slicker and quicker. And then there was the merry-go-round…

Ahhh, the merry-go-round…an instrument of both delight and torture. Over time I learned that it was better to ride it when I was at the playground with kids I knew and somewhat trusted, like my Girl Scout troop. I came to know who pushed the fastest, but could be trusted to stop the spinning madness either to let a newcomer on or to let someone off before they threw up or fell off. But occasionally I made the mistake of getting on a merry-go-round with kids I didn’t know, and, invariably, there would be some older boy who took over the job of pushing. At first, it was thrilling to be spinning so fast with someone else doing all the work, but within minutes, we realized we were caught in a vortex of madness. The older boy’s face took on a demonic cast. When kids screamed for him to slow down, he only speeded up, laughing. Kids on the edge were hanging on for dear life. One or two might be turning green.

Spin. It’s no wonder the word has come to mean “a heavily biased portrayal in one's own favor of an event or situation.” I’ve been watching a lot of political coverage since January, which of course is becoming even more intense as we enter the phase of the conventions and then the fall campaign. And I’m beginning to feel like I did when I was caught on that merry-go-round as a kid. When you watch a lot of political programming, the spin is dizzying. I suppose the spinners intend that people just watch a snippet, so that they only get a freeze frame, a moment in time, and can’t detect the spinning motion.

One aspect of spin that is really getting on my nerves is the use of “talking points.” I know the campaigns feel that they have to stay “on message,” but this is ridiculous! If you watch a few hours of political coverage, the network might have 4 or 5 spokesmen from the McCain or Obama campaigns or each party, and each will say the same thing, obviously working from the day’s talking points memo. No matter what question is posed by the interviewer, the spokesperson will manage to steer his or her comments right back to the talking points, whether or not it has anything to do with the question. Heaven forbid that a person should actually think about the question and his answer! After the Saddleback forum, Obama was roundly criticized for giving long-winded, thoughtful answers, while McCain was praised for giving direct, snappy answers, which actually were little more than snippets of his stump speeches.

Another thing that is driving me absolutely nuts is the Pot-Kettle Approach. I admit to a certain bias here, but the McCain folks seem to be using this approach much more than the Obama folks. Basically, the McCain people take a fault of McCain’s and accuse Obama of it. Several examples come to mind. The McCain campaign accuses Obama of being elitist, while in fact McCain is the one who owns at least 8 expensive residences and makes condescending jokes about public housing and says that everyone who earns up to $5 million is “middle class.” The McCain folks tried to play upon the bitter feelings of Clinton’s supporters, talking up Hillary as if they were ready to pick her for McCain’s VP and saying that Obama didn‘t give her respect…never mind that McCain has in the past made cruel, crude jokes about Clinton being a lesbian and about how ugly Chelsea was, and that he laughed when a supporter called Hillary the “bitch.“ Yesterday on MSNBC’s coverage of the DNC, a McCain spokesperson had the unmitigated gall to say that Obama has engaged in the nastiest, most negative campaigning. Say WHAT? If that isn’t the pot talking about the kettle…

STOP! I want to get off!

Dread

The pillbox, with a week’s supply of pills untouched, gave away his secret. How could I not have noticed? Worried about the angioplasty and then recovering from it, I became careless…I didn’t check to make sure he was taking his medication. He’d been so good about taking it ever since he got out of the state hospital a year and a half ago. During his 7 months there, they must have indoctrinated him well about the necessity of taking it. But then the antipsychotics triggered diabetes and, in his mind, the solution is not to watch what he eats, but, rather, to stop taking the pills that are the culprit.

I tried to talk to him about it, reminding him that the medication keeps the voices and visions in check, that he’ll probably wind up in the hospital again if he doesn’t take it. But, even when he’s on the medication, it’s not easy to reason with him, and now, after a week without it, he’s even less receptive to rational explanations. “I don’t need it, how long do I have to take it, I don’t need it.” I tried to contain my rising frustration and sense of impending catastrophe. Those familiar feelings of panic and dread stirred within me.

I’m sure it’s just a matter of time…weeks or perhaps days…before the voices become a cacophony, before the bugs and helicopters and angels appear, before the paranoia shakes his world. And, already, I fear the moment when I know it’s time for him to go to the ER. Will he go?

I'm off

I'm about to take off for my angioplasty and stents...back in a couple of days.

Today's headlines, brought to you by the Republican Party

Home Prices Fall 7.6 Percent- AP
US Foreclosure Filings Surge 55 Percent- AP
Inflation Jumps to 17-Year High- AP

Heckuva job, W!

STD

Thank God for STD! Oops, lest you get the wrong idea, that’s Short Term Disability insurance. I finally decided that I should stop working and apply for it. Now if I’d gone to the ER the night I had the heart attack, there probably wouldn’t have been any question about it…I would have been advised not to work and that would have been that.

But, not knowing that I had, in fact, had a heart attack, I stayed home one day and then went back to work. It seems foolish now, but keep in mind that I had that performance review back in June and got low scores on Productivity and Absenteeism, so I was panicked that I had already taken two whole days off and missed all those visits. So I’ve been working ever since, but last week I only made 5 visits and it just about did me in. I’d go see a patient, then come home and sleep for 2 hours before going to see the next. But after the angiogram last week confirmed that I definitely had a “myocardial infarction,” I decided I should take some time to recover from the event and my upcoming procedure. Hopefully there won’t be any problem getting the doctor to sign the form stating that I have no business lifting 50 pounds on a daily basis.

This whole episode has given me lots of food for thought about ageism, disability, and the precarious grip many of us have on our health insurance. A recent poll conducted by NPR, the Kaiser Family Foundation and the Harvard School of Public Health found that over half of the people surveyed reported that they have gone to work when they were sick even though they felt they should stay home because of the financial issues that are involved. Robert Blendon, of the Harvard School of Public Health, says the poll suggests there are two main reasons people go to work sick: There is no paid sick leave, or they feel pressure from their employer to be on the job, regardless of whether they are ill.

As I have written before, my company offers Paid Time Off, but if you use it, you’re still expected to complete all your visits, so what’s the point? As long as you can plan ahead to use your PTO for a vacation and work in all those visits ahead of time, no one blinks an eye. But if you have to use that PTO for an unexpected illness or emergency and can’t make up all the visits you missed, it counts against you. Or you can take maternity leave for 6 weeks, no problem. I guess I should have planned this heart attack 9 months ago…

Over the last year, I have often worried about what I’ll do if I can’t handle the physical demands of my job any more. I was a bit reassured when I read the details of our Long Term Disability plan and found that, if I’m no longer able to do THIS job but still capable of working at some other job, the plan pays at least part of the difference in wages if the new job doesn’t pay as well. I may have been reading too much into a comment one of the office staff made yesterday when I called to say that I was taking short term disability. I told her I wasn’t yet sure how long I would be out, and she responded, “If you’re able to come back at all.” It seemed an odd thing for an office person to say and made me think that the district manager (the one who gave me the bad review) had said something. But what these folks don’t realize is that for most people, taking disability or early retirement isn’t an option for one simple reason: the need for health insurance until Medicare kicks in at 65. Like it or not, by the time I’m able to retire, I may be needing therapy more than my patients!

I think I’m beginning to understand how John McCain must feel. This month marks my 30th anniversary of doing occupational therapy. You’d think that experience would count for something. I was working in this field before many of the therapists at our company were born and when my supervisor was learning to read. But I find that I am less valuable to the company than someone right out of college because they are able to make 30-40 visits a week without breaking a sweat.

Recently our employee newsletter had an article encouraging us to purchase clothing, hats, and backpacks with the company logo on them, as a way of promoting the company. There were photos of the owner and some other employees sporting their gear in various locations, such as at the Golden Gate Bridge, on the beach at Cancun, etc. We were encouraged to send pictures of ourselves in our company gear. I’m sure we’ll get lots of great photos of therapists at the Grand Canyon, on Broadway, on cruises, in Hawaii. Gee, I can hardly wait to submit mine…waving from my bed in the cardiac cath lab.

Whew!

What a relief...I only need angioplasty/stents, not bypass surgery!

A reprise of my blog on grief in special needs adoption

This week Robert and Jennifer have written so eloquently about the grief that parents of disabled kids experience. I suddenly remembered an essay I wrote about eight years ago for my Geocities page, back in the pre-Blogger, pre-360 era, and I found it and reread it this morning. I thought it might be of interest to folks reflecting on this topic of grief and disability:

I am an occupational therapist and adoptive mother to 10 kids, most of whom have significant physical and psychological disabilities. Over the years we have dealt with cerebral palsy, spina bifida, traumatic brain injury, dystonia, diastrophic dysplasia, Tourette syndrome, anorexia, ADHD, schizophrenia, attachment disorder, post traumatic stress disorder, depression, learning disabilities, and mental retardation.

Yes, I said "disabilities." I guess the politically correct terms are "differently abled," "physically or mentally challenged," etc. But why sugar-coat the problems? Why deny the difficulties imposed by a physical or mental limitation? Why minimize a devastating loss of ability into little more than an inconvenience? Why not acknowledge the sense of loss and grief which accompany disability?

Many people have particular difficulty understanding that an adoptive parent could have such feelings of loss and grief. "After all, you knew Johnny had problems when you adopted him, didn't you?" But adoptive parents, just like biological parents, go into parenting with certain dreams for their child and their family. After so many years of very draining parenting, it is somewhat difficult to remember what my dreams were, but I vaguely recall some of them. I dreamed of a close relationship with my children. I dreamed of sharing my love of learning, reading, and other cultures with them. I dreamed of travelling with my children, hiking in the mountains, exploring other countries.

Over the years I have had to bury many of those dreams. Some of my children, because of their attachment disorder, have totally rejected me. Dreams of having deep conversations about literature or politics have faded as I listen to discussions about football and DragonBall Z. Knowledge of geography is limited to being able to name those cities which have professional basketball or football teams. Exploring is limited by both physical barriers and lack of interest.

Although over time the anguish gives way to a dull ache, I have found that as my children have become teens and young adults, the sense of grief sometimes washes over me like the ebb and flow of the ocean. Most of the time I hardly think of their disabilities; they have become as routine as their eye color. But then reality crashes over me. Perhaps it's a milestone missed, for example, as a friend gets his drivers' license, reminding us that Johnny won't ever get one. Perhaps it's seeing Johnny sitting on the couch next to a guest about the same age and realizing that there is a huge gulf between the two of them in terms of maturity, interests, abilities. Perhaps it's watching a mother and her child at the store, hand in hand, or a baby secure in his mother's arms, and grieving for the lost soul who never knew that sort of love and nurturing until it was too late and so rejects it. Or, the most difficult, perhaps it is watching your child change for the worse over time, for example, seeing a bright, charming child become a slow, flat schizophrenic teen.

And the parent's grief is exacerbated when the child himself goes through a period of grieving. When my son who is disabled because of severe physical abuse realized at the age of 5 or 6 that he had once been normal, he went through a period of profound grief.

So I think it's essential to acknowledge this sense of loss and grief among adoptive parents, and that these parents receive support, rather than judgment and criticism. A parent whose most stressful medical crisis with her child was getting stitches or having ear tubes cannot imagine a life with braces, wheelchairs, body casts, multiple surgeries, catherization, etc. A parent whose biggest behavioral challenge is getting his child to stop name-calling or to pick up their dirty socks cannot imagine life with a child who rages for hours, threatens to burn down the house, assaults others, verbally and physically abuses the parent. Yes, we adoptive parents chose this journey, but the course was unmarked and uncharted. When the road is full of potholes, or the night is dark, or the storms rage, it would help to have a friend walking along with us, with an arm around our shoulder and a word of comfort.

Random thoughts on a heart attack

As you can imagine, my mind has been racing since my apparent heart attack last week. So many thoughts, so many concerns have been whirling in my head…

First there’s a sense of dread for what’s ahead. I hate being cast in the role of “patient.” I haven’t had much experience with that role, having only been in the hospital twice in my entire life, for the insignificant procedures of having my wisdom teeth extracted and having my tonsils taken out as an adult. I haven’t had very positive experiences with doctors, either, having been sexually harassed by two (at a time when I didn’t even recognize what sexual harassment was), mocked by another, and in general being consistently treated in a condescending manner by most. A couple of years ago my best friend was going through treatment for cancer, and all I could think was, “I’m not strong enough to endure something like that.” Right now I am desperately hoping that all I’ll need is an angioplasty and a stent, rather than a bypass. The one silver lining here is that the cardiologist I wound up with seems to be a good one who assured me that he would take care of me.

And of course the overwhelming concern is that I need to stick around as long as I can for my boys. When my mind dares to consider what will happen to Marcus, Gabriel, and Tevis when I’m gone, I almost go crazy. Yes, of course there are group homes, but I want to know that they will have someone who cares about them. In recent weeks, I have been doing a lot of reading about cohousing, and what I’d like to have in place at some point is to be part of a cohousing community, so that when I’m gone, the boys will be part of a community, with relationships that will support them. I want them to have people in their lives who aren’t paid to be there. Ideally, family would fill that role, but I have to be realistic and acknowledge that my family just won’t be there for the boys.

As always, money is a big worry. I’ve finally gotten my caseload up to an acceptable level, and my expense down, where I actually have a surplus at the end of the month. But I have very little PTO saved up, having used most of it when Marcus had his surgeries. Yes, I have short and long term disability coverage, but it only pays 60% of wages, and I was reading the policy last night and discovered that they go back 12 months to determine your wages. Well, that will take them back to include some lean months when the company wasn’t giving me enough patients, so the disability payments will be low if I have to be out for a considerable length of time. Then you add the additional financial burden of the medical bills, and it doesn’t look good. So there’s another good reason to desperately hope for an angioplasty over a bypass!

And then there are the thoughts of all the practical, nuts and bolts sort of things that need to be done…revising my will (just in case), getting in extra groceries and making sure the boys’ prescriptions are all filled, catching up on the laundry, getting the house presentable in case people are coming in to help the boys, etc.

Finally, even though I plan on hanging around a long, long time, an event like this does tend to hit you over the head with a sense of your mortality. I can’t help but start thinking of a “bucket list” of all the things I wanted to do and haven’t yet accomplished, and when I do that, I have a sense of regret. But something changed my perspective yesterday. I read about the death of Randy Pausch and have been listening to his “Last Lecture,” which I had not previously heard of. Hearing him talk of realizing his childhood dreams has led to me think of what I have accomplished, rather than of what I haven’t. But I guess I’ll explore that more fully in a future post.

So, enough of maudlin thoughts…time to get busy.

Bummer!

I just got back from the cardiologist. He says I probably had a heart attack last week. And so it begins...

Blue genes

I remember a moment of dark humor amongst our family as we waited for my dad’s funeral to start. We were all gathering in an anteroom, greeting and visiting with family members some of us hadn’t seen in years. One of my cousins is an ophthalmologist in Dallas and several of us have taken him up on his offer to check our eyes or even to have Lasik surgery without charge. As some of us were making reference to his gracious offer, someone quipped, “Too bad you didn’t go into cardiology!”

No joke. My mother had a heart attack when I was in junior high, which would have been when she was in her mid-forties. One brother had an arterial bypass many, many years ago, and the other brother had a six way bypass a few years ago (I didn’t even know they did 6 way bypasses!). For too long, like an ostrich with its head in the sand, I have comforted myself with the fact that I haven’t had the problems my brothers have had, ignoring the possibility that avoiding doctors has enabled me to avoid a diagnosis.

Well, last week I had a rude awakening, as my blood pressure skyrocketed, accompanied by a headache that made the back of my head feel like it was being squeezed in a vise. I went to the doctor, who changed my blood pressure meds. (Thank god, she took me off the one that turned me into a lump, so tired and depressed I was barely functional.) Great! But on the way to my car, I had the worst chest pains, which finally forced me to do an about face, right back into the doc’s office. They did an EKG, which was OK, and sent me off with a prescription for nitroglycerin and an appointment with a cardiologist, which is tomorrow.

Ah, genetics! It sometimes seems that my genetic history is an inexorable force seeking to turn me into my mother, with a shoebox full of prescription bottles. Hypertension, diabetes, depression, poor eyesight, big ears…thanks, Mother and Dad! But I refuse to fill that shoebox, with one pill after another, many prescribed to offset the side effects of another. So I dusted off the exercise bike tonight…

Getting it

I’m always frustrated when I’m in a situation where someone doesn’t “get it.” On a political level, we saw a prime example this week when John McCain’s chief economic advisor, Phil Gramm, informed us that, in this time of financial hardship for many folks, we are simply in a “mental recession” and that we have become a “nation of whiners.” While McCain was quick to distance himself from Gramm’s remarks, the fact remains that McCain himself has been slow to acknowledge, or even recognize, the seriousness of the current economic situation. Time after time, he has pronounced that the “fundamentals of the economy are strong,” seeming to believe that if he says it enough, it will be so. Are we surprised? Only 4 short months ago, our president was dumbfounded when a reported asked him about the prospect of $4 a gallon gas, responding, “Four dollars a gallon? That’s interesting. I hadn’t heard that.” These rich politicians who have very limited contact with us regular folks can’t imagine how we live. When Cindi McCain charges $750,000 in one month on her American Express cards, when she has a closet full of $3000 designer suits, when the McCains own eight expensive residences, I can see why it might be difficult to empathize with someone who lives from paycheck to paycheck, who can’t afford the health care they need, who has lost their home to foreclosure. It’s not just a failure of empathy. It’s a failure of what I like to call “empathic imagination.” These people, living in an insulated world with others like themselves, find it almost impossible to imagine what life is like for those who live in a much different world.

But this failure of empathic imagination isn’t only a fact of political life. I see it in my everyday life as well and I find it equally frustrating there. One recent experience at work immediately comes to mind because I was so upset about it at the time. Last month I had my annual performance review and received low scores on “Productivity” and “Absenteeism.” The supervisor assured me that the numbers were only based on the time period from October on, after my caseload picked up. Great. In that period of time, I have missed work for minor surgery on my feet, an emergency stress test, two MRIs, my sons’ two visits to the ER, my mother’s two trips to the ER by ambulance, Marcus’ two surgeries and follow-up care, my mother’s regularly scheduled doctor’s visits. I also had to take Gabriel to MHMR every two weeks, but usually managed to drop him off and see a patient or two while he waited. I reminded her that my absences were due to these circumstances and she sort of brushed my protest aside. (Later I checked with the head of HR and found out that I could have been using intermittent Family and Medical Leave Act time for these absences and they wouldn’t have counted against me…it would have been nice if someone had told me that!) Anyway, the supervisor was obviously trying not to seem uncaring and asked a bit about my mother, but what I find at work is that supervisors ask about things like that, but they don’t really want to listen to the answers. I explained that my mother is 89 and legally blind. A few minutes later the supervisor asks me, “Does she still drive?” Say what? Hello? I just said she was blind, plus if she could drive, WHY would I be taking her to her appointments? I also mentioned that one evening recently I tried to call my mother and didn’t get an answer over the course of an hour. My mother almost never leaves her apartment after supper, so I was in a panic. The supervisor laughed and said something like, “I guess you were wondering where she went off to!” I couldn’t believe she didn’t get it, that I was panicked because my first thought was that my mother was lying helpless on the floor after a stroke or heart attack. Naturally that would be my first thought, given her age and the fact that I lost my dad not so long ago. I see this as a failure of empathic imagination, something that I seem to encounter a lot as I am surrounded at work by 20- and 30-somethings, many of whom have responsibility for no one but themselves and have unlimited youthful energy and good health. They literally cannot imagine how life is for me. Maybe 20 or 30 years from now, they’ll understand how things change when you have to manage work while dealing with personal health problems, caring for elderly parents, etc.

Most people, I think, would agree that empathy is an important facet of emotional intelligence, but I would say that the first step of developing empathy is to develop the ability to imagine what another person might be experiencing. One has to be able, mentally, to walk a mile in someone else’s shoes.