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.