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.

Dad

My Dad died on December 6, 2006, at the age of 92. It had been a normal day. He and my Mother had breakfast at their retirement center, where my Dad, as was his custom, assisted a friend who is blind. He read the paper, watched some TV, took the car to fill the tank. After lunch he called his sister in Oklahoma and read his e-mail. In the evening he was sitting in his recliner, watching TV, when he had a heart attack and died. My mother heard his last gasps from the next room, but he was already gone when she got to him. We gathered that Saturday for his funeral…mostly family, since most of his friends have already passed away or were too infirm to attend.

Needless to say, losing Dad evoked so many memories of his long life. In searching for his discharge papers from the Navy, so that they could present my mother with a flag honoring his military service, I found a treasure trove of 3 cardboard boxes full of old photos. I remember studying these photos as a child…some were so familiar that they seemed part of my life, even though they were taken long before I was born.

I reflected on life with father. I had always thought of my father as a rather distant man. With the advantage of maturity and hindsight, I now understand that our family was a typical family of the 50s. Dad’s primary role was to be the breadwinner. He worked hard to provide for us, to build a house, to save for our college educations. In those days, no one had heard the term “quality time,” and compared to today’s fathers, he was relatively detached from the lives of his children, I guess. But if I tweak my memory a bit, I remember many things we did together. I remember what a treat it was to drive to the A&W stand on a summer evening, and to take our frosty mugs from the little tray on the car door, with the fizz and the distinctive smell of rootbeer tickling our noses. He took us along when he went to the driving range to hit golf balls or when he went to the putting green at the golf course to work on his putt. Of course he let us drive or putt a few balls ourselves, but what I really liked was washing the golfballs in the ball washing machine. He took us to groves of pecan trees where we gathered pecans. We went to the zoo and rode the rides at the amusement park next to it…those little boats that floated around the circle, the small ferris wheel, the merry-go-round. We went to office picnics where we got to play Bingo and ride ponies. We walked to the nearby Ashburn’s ice cream shop on a summer evening.

He seemed like he wasn’t very demonstrative, but he must have been to some extent. I’m told that as a toddler, I used to call him “Daddy Dear Boy.” He did have a temper, particularly when he was assembling something and something went wrong or if he got lost on a trip.

When I was a teenager, there was considerable tension. Like many teens, I was quite critical of my dad. I remember looking down on him a bit because he rarely did any reading. Silly girl…I couldn’t appreciate how hard he worked, leaving little time for leisure. We clashed over politics: I was a youth of the 60s and he voted for Richard Nixon. But I’ll say this for my parents…they always accepted my friends, seeming to take the view that if someone was a friend of their daughter, that person was OK. (This was in sharp contrast to some of my friends’ parents, who were quite open in their distaste for me as a friend of their son or daughter.)

Dad retired in 1972. For many years he played golf every day of the week except Sunday. Finally back pain forced him to give up his favorite pastime. At times he seemed restless and at loose ends. But eventually, in his last years, he seemed to enter a new phase in his life. Once so reserved, he started to hug us family members whenever he greeted us or said goodbye. He was well known in the apartment complex for his congenial wave with which he acknowledged all acquaintances. He doted on his great grandkids. He read quite a bit, mostly history and political commentary. He was quite interested in current events, and this former Nixon Republican became a vociferous critic of George W Bush. Oh, my gosh, when he got started talking about Bush’s environmental policies, he sounded like the president of Greenpeace! And I’m surprised he didn’t have that heart attack when he talked about Karl Rove. This man who had never encountered anything more technologically advanced than an electric typewriter or a pocket calculator learned to use a PC and surf the net at the age of 88.

I am a very fortunate woman. My dad lived to be 92. He was married to my mother for 69 years (talk about a stable family life!). And he lived long enough that both he and I mellowed with age to a point that we truly appreciated each other.

Fears from the past

"And you, of tender years,
Can't know the fears that your elders grew by..."

You may recognize the verse above from CSN&Y's song "Teach Your Children." It came to mind tonight, as I watch the coverage of the Democratic primary in West Virginia. As a political junkie, I have watched hours and hours of election coverage in the last four months, and I have become increasingly disturbed by a certain aspect of the commentary which has been repeated on an almost daily basis since Obama took the lead.

One after another, the commentators posit that the only way Hillary can win the nomination is if some catastrophe befalls Obama, some intervention, some unforeseen tragic event, some disaster. Now perhaps these folks mean nothing more by these references than some as yet undiscovered skeleton in Obama's closet or the possibility that he's arrested for DUI some night. But for those of us who lived through the tumult and tragedy of the 1968 election, these words have a sinister ring.

I think there is a certain irresponsibility in these words being repeated so often, given the charged nature of the campaign. Just today, the Washington Post reported that Obama's campaign workers have faced racist remarks, threats, and acts of vandalism. And then you have Rush Limbaugh urging his listeners to create chaos at the Democratic convention in Denver, saying "the dream end of this is that this keeps up to the convention and that we have a replay of Chicago 1968, with burning cars, protests, fires, literal riots, and all of that. "

When I went to an Obama rally in Dallas back in February, I was appalled that, by the time I got to the entrance of the arena, the security people had stopped doing security checks! Yep, we walked in an open door...no metal detectors, no security officers, nothing. I mean, we're talking DALLAS, folks! And this was right after the Kennedys had endorsed Obama and there had been so many comparisons to JFK. I was a nervous wreck during the rally...all I could think of was that some nut could have just walked in with a gun, with the idea in his head that if Obama wanted to be like Kennedy, he'd make it happen.

And I admit that I even have a fear of talking about this. The night Bobby Kennedy won the California primary in 1968, I watched the returns and watched him speak to the crowd. I remember thinking how easy it would be for someone to shoot him at that moment. I woke up the next day to learn that he had been assassinated.

So I wish all the political commentators would end the litany of "unforeseen events, disaster, catastrophe, intervention." I would suggest that they state things in a more specific way, such as "scandal" or "political gaffe" or whatever. I fear that constant talk of "disaster" will become a self-fulfilling prophecy.

Mother

My friend Thom wrote a moving post for Mother's Day. As one of the folks who is acutely aware of the absence of his own mother, he wrote:

I truly wish you and your mother a wonderful day. Honor her, cherish her, and
let her know how much you love her. Whatever your relationship, she is the only
mother you will ever have, so get past the family crap and be good to her.

So I'd like to honor my mother here. My mother is 89 years old. As part of the "greatest generation," she grew up during the Great Depression and launched her adulthood during World War II. As I grow older, I am able to understand the tremendous force these events had on her life and her world view. Her mother was virtually a single parent, since my grandfather was a shell-shocked veteran of WWI, who spent most of his post-war life in a veteran's hospital psych ward. My grandmother supported the family by working as a teacher in a 2 room country school. When she began teaching, she didn't even have a high school diploma, but eventually she got her equivalency certificate, and went on to earn both a bachelor's and master's degree, while working full-time as a teacher. And I mean working full-time...she drove the country roads well before dawn, arriving early at the school to build a fire in the wood stove. She distributed food and clothing during the Great Depression and even gave the kids haircuts. With such a burden on her, she sent my mother to a boarding school as a "working student" in her teen years. I'm sure that had a great affect on my mother's personality. To this day, she is a very serious minded person. I sometimes wish she would "lighten up," but I well understand the source of her serious nature.

She and my father married in 1937 and had their first child in 1941, just before my father left for service in the Navy in WWII. So my mother was on her own with a young child for several years. After the war, she gladly settled into the traditional role of stay-at-home mom. I think she must have felt it was both a great luxury and a great responsibility to be able to do this, after her childhood experiences.

I won't get into the feminist politics...I just know that I benefitted from having her so involved in my life when I was a child. She sewed my clothes, led my Brownie troop, was my classroom room mother, etc. She was there when I got home from school every day.

So now she is on her own, after my dad died a year and a half ago. It's difficult, as she has lost her most of her eyesight in recent years, a situation which has caused her great frustration. While she still has most of her faculties, I see her slipping at times. It seems that her world is shrinking all the time. I often miss the parent I used to know. But I remind myself that I'm lucky to have her here still and that it is an honor to be able to pay her back in some small measure for all she did for me.

(By the way, in the photo above, my mother is the one on the left, with my grandmother in the middle and my aunt on the right.)

So once again it’s time to celebrate mothers. There are so many kinds of mothers…

There is the mother, who at the tender age of 16, has the wisdom to know that she is not ready to be a parent, so she makes an adoption plan for her unborn child.

There is the mother who burns her child in hot water, leaves his burns untreated, and, after two weeks of listening to him scream and cry, snaps and beats him into unconciousness. She serves a few months in jail, while he serves life without parole in the prison of paralysis and blindness.

There is the mother whose heroin addiction causes her child to be born with a severe birth defect.

There is the mother who pickles her baby’s brain in alcohol, neglects her infant, and then abandons her in the entryway of an apartment building, leaving permanent emotional scars.

There is the mother who cannot live with the stigma of a biracial child in a racist society, so she makes things easy on herself by getting rid of him, never giving a second thought to the devastation that 14 years in an orphanage will have on his soul or how that little boy rocks himself to sleep every night in his bed.

There are the two mothers who leave their disabled children in post offices or police stations in the middle of the night and then disappear…their children will never know their real names or even what day they were born.

There is the mother who walks out of the maternity hospital, leaving her disabled newborn behind to begin a lifetime in bleak institutions for “invalids.”

There is the mother who gives her second child up for adoption, knowing that she will probably never finish college if she has to raise two children.

There is the mother who is so out of touch with reality that she thinks she’s Tina Turner and doesn’t even know she’s pregnant…she willingly signs away her parental rights, saying, “I sho’ don’t need no baby.”

And there is the mother who gives these children a home, a family, a chance for an education and a normal life. She isn't perfect, but she does her best and it is good enough. But most of the children can’t forgive her her own mistakes…or those of those other mothers. For a long, long time she is devastated by their rejection. But finally she puts it behind her. She focuses her attention and energy on her work, the beauty in her life, her own elderly mother, and most of all the sons who were able to absorb her love and then reflect it back to her.

Happy Mother’s Day!

Unexpected visitor

Yesterday I walked out my front door to go see my afternoon patients, and I noticed a car sitting out in the street in front of my house. When the window was rolled down, I did a doubletake...in the passenger seat was my daughter Leslie, whom I haven't seen for about 2 1/2 years. She lives down on the Gulf coast of Texas, so it was totally unexpected to see her sitting there! I walked over and talked a bit, but I had to get to work, so she said that she'd try to get back to visit before she left town.

So she dropped by this afternoon with her fiance. We did a little catching up...and then it was time for me to go see patients. As I thought about my unexpected visitors, I felt oddly detached. There was a time when I would have had a much different reaction when this person who had cut me out of her life, who had told me she was "divorcing" me, who now calls another woman "mom," showed up at my door with a fiance twice her age. It's funny...I used to say that ADHD was genetic...you get it from your kids! (You see, I used to be a focused, fairly organized person, before living with 6 kids with ADHD.) Now I think it's fair to say that attachment disorder is contagious...you catch it from your kids. After so many betrayals of trust and so many rejections, I find myself feeling very detached from the kids who cut me out of their lives. I have no desire for any drama or conflict. So it was a pleasant visit, but hardly an emotional reunion. Some may think that sounds cold or heartless, but until you've lived day in and day out with kids with attachment disorder, you probably can't understand.

In an earlier post, I said that, even though many of my kids have rejected me, I do have the consolation of knowing that I gave my kids a chance for a normal life. This was Leslie in Korea at age 3. 'Nuff said...

Hiking the urban grasslands

Yesterday I took Banjo to his favorite place to hike. Tandy Hills is a 160 acre urban grasslands preserve, tucked just south of I-30, within view of downtown Fort Worth. As usual, we had the whole park to ourselves.

We begin at the top of our favorite trail.

Just imagine that this is what the Native Americans saw across the wide expanse of Texas.

The hues of the grass range from yellow to this rusty red.

This unusual wildflower caught my eye.

Glades were covered with a blanket of wildflowers.

We return to the top of the trail and look eastward.

On the way to our car, I saw this wildflower, which appears to be some sort of mega-dandelion, about 4 inches in diameter.

Back at home, Banjo rests up after his big adventure with his new buddy Boo.

So THIS is a midlife crisis!

I've tried to sit down several times this week to write a blog entry, but I can't seem to focus. Thoughts keep whirling through my mind. I try to pin one down long enough to get a handle on it, but...poof...it's gone! I have a lot on my mind right now. Now if you're a reader from my previous 360 blog, you know that I am (1) a worrier and (2) a bit on the morose side. So maybe this is just my typical morose worrying at play. But I'm thinking that this is my midlife crisis.

About 6 weeks ago or so, I fell down in the hallway at home and landed HARD on my knees. Since the surface is vinyl on top of concrete, there was nothing to cushion the fall. Since then I've had a lot of pain in my left knee, not so much when I'm walking, but when it's in one position for a period of time. I can't bear to flex it to sit cross legged on the floor. And that's a problem, since most of my therapy work is done on the floor. Meanwhile, that ongoing problem with mobility that I've had for several years has come back with a vengeance. The muscle cramping in my legs decreased when I stopped taking a medication that I'd been on for years (and I have a lot of anger that no doctor ever made the connection between this medication and many problems I had which were side effects of the medicine, including the muscle cramps, the high blood sugar, high triglycerides, and severe anxiety). But although the cramping has decreased, when I walk or stand for an extended period of time, my legs go numb and there is a tightness in my hips like spasticity. It was so bad when we went to the Main Street festival, that I thought I wasn't going to get back to my car!

Anyway, I don't want to bore you with my medical problems. My point is that I am beginning to get quite worried about how I will manage to keep doing this type of work until I'm 67 or 70. It simply has never hit me so realistically that it might not be possible to perform the physical demands of the job at some point...working on the floor, lifting kids, carrying equipment from house to house, etc. And if at some point I can't do the work, what will I do?

I'm also facing another aspect of the midlife crisis...having to consider that there are some things I've always wanted to do in my life that I might not be able to do. Living abroad, moving to the country, travelling, making a mark on the world...when I finally have the time, will I have the energy? And there are all the other limitations...the necessity of living someplace where Gabriel's and Marcus' needs can be met, the considerations of medical insurance and medical care, staying near my mother to help her as long as she's alive.

And right now I'm part of that sandwich generation...helping my mother and my disabled kids. I feel a lot of stress due to the fact that I want to do more to make Marcus' and Gabriel's lives fuller, and I feel like I'm not doing enough. I probably ought to do more to help my mother, but sometimes I have to admit it's a struggle because of the conflicting emotions I feel. It's difficult to watch a parent grow old and become less and less like a parent, to watch them become more and more self-centered as their world shrinks. I miss having a parent who acknowledges my birthday or cares if I don't feel well.

So I struggle. I know I have to do more than whine about all of this. Sometimes I feel so overwhelmed that nothing gets done, because I don't know where to start. I think it's time to sit down and make some very methodical plans, to start charting a deliberate course, one step at a time. I feel like I've been drifting too long...

Introduction, part four

I realized tonight that my introductions were incomplete. I forgot to introduce my furry "kids."

This is Coolie, striking his best pose for the cover of the LL Bean catalog, in a rare Texas snow. I found Coolie at the Arlington city shelter.

This is Banjo. No, he is not a beagle on steroids...he's a Treeing Walker Coonhound. Walker hounds have been known to actually climb trees in pursuit of a raccoon, but Banjo has not yet displayed this talent. I found Banjo at an SPCA shelter up by the Texas-Oklahoma border.



This is Blossom, pouncing towards Coolie. She's supposed to be a pointer/Staffordshire bull terrier mix. I got her from the Irving city shelter on her "disposition date", ie, the day she was scheduled to be disposed of (euthanized).



And this is Boo, our most recent addition. He, too, is a Walker hound and was in a city shelter in Texarkana. He was rescued by a rescue group on the day he was to be euthanized and was in pretty bad shape. He evidently has been mistreated somewhere along the line, and we are still working on getting him to trust people.




My dogs bring me so much happiness. I encourage anyone who wants a furry friend to consider adopting a dog from a shelter. There are millions of dogs euthanized in this country...wonderful dogs who deserve a home and family, a full tummy and a warm bed, companionship and loyalty.

Feeling festive!

This evening Gabriel, Marcus, and I went downtown to the Main Street Arts Festival. We headed straight for the Sundance Square stage, where Terrance Simien and the Zydeco Experience would be performing.

This is a view of a high rise apartment building that has a bit of history. In the year 2000, a tornado tore through downtown Fort Worth and caused severe damage to this building, which was at the time the Bank One Tower. It was scheduled for implosion a year later, but the demolition was called off and the building was later refurbished into lofts and condos.

Here's Gabriel in front of a mural celebrating Fort Worth's western heritage.

And here are Marcus and Gabriel waiting for the concert to begin.

We didn't have long to wait...soon Terrance Simien and his zydeco band came onstage.

We had a good time. I'm not sure the boys particularly liked the zydeco, but they seemed to enjoy the festive atmosphere. And we ran into two old friends of Marcus'...two young women who were classmates of Marcus and Jesse way back in their early childhood class when they were 3 years old! I was the girls' therapist when they were in elementary, so I knew them well and also knew their parents pretty well. Their parents were with them tonight, so it was quite a happy reunion. After the concert we ate at Billy Miner's Saloon and then walked around the festival a bit. It was a fabulous spring evening and a wonderful night to stroll around downtown.

Why won't they take their medication?

How many times have you heard social workers, doctors, and police officers bemoan the fact that people with mental illness just won't take their medication? Particularly after some tragic crime is committed by an individual with a history of mental illness, the litany begins. The experts explain the various reasons those people won't stay on their medicine: they start feeling better and think they don't need it any more, they don't like the side effects, they forget. But there's one reason the experts never mention...there are so many obstacles thrown in the way of even getting the medication that many poorly functioning folks probably give up.

Ever since Gabriel got out of the state hospital a year ago, getting his medication has been a source of constant frustration for me. Because the medication he's on has a high risk of very serious side effects involving liver function, initially he had to go for blood work every week. Now he goes every 2 weeks. The scrip has to be presented in person and the blood work has to be faxed to the pharmacy before it can be filled. The medication is so carefully controlled that only a handful of pharmacies are allowed by the government to dispense it. For a solid year, I was told that we had to go to a specific pharmacy, which I not so affectionately came to call "the pharmacy that time forgot." It was inconveniently located, was open limited hours (closed at 6 PM on weekdays and at 1 PM on Saturday, not open on Sundays), and was staffed by the rudest bunch of people you'll ever meet. Most of the time the blood work had not been faxed, so I either had to wait an hour or come back another time. For many months, the medication could only be dispensed 2 weeks at a time, and, since Medicaid only allowed 3 prescriptions a month and Gabriel took other medication, sometimes we had to wait until the first day of the next month to get it filled. (I finally got smart and started paying for his cheaper drug out of pocket, so as to reserve the Medicaid for the more expensive drug.) The upshot was that most of the time, getting his medication involved 3 trips to the pharmacy, during working hours. Finally a couple of weeks ago, after a year of dealing with this pharmacy, and making my dissatisfaction with it well known to MHMR, someone bothered to tell me that I could go to another pharmacy on the list (even though they had told me at first that I couldn't). There was a 24 hour CVS pharmacy on the list. I thought my problem was solved!

But, no, last Friday I took the scrip to CVS, and they said they'd have to wait for the bloodwork and that they had to order the medication anyway, since they didn't have it in stock, so it would be Monday before I could get it. I went back Monday after work and told them I was there to pick up Gabriel's meds. They said they had to get it ready. After I waited 45 minutes, they called me to the counter, to tell me that they hadn't got the bloodwork. I called MHMR the next morning, and yes, they had faxed the bloodwork. So they said they would fax it again. I went back (are you keeping count? my third trip), and was told they hadn't got the bloodwork. I informed them that it had been faxed 2 times! They let me have the medication. Time to try yet another pharmacy on the list...

Well, my point is this...if everyone agrees that it is a challenge to keep schizophrenics on their meds, it seems that it would be a good idea to make getting the medication as easy as possible. Every time this happens, I think about how frustrating it is to me and how much time and effort it takes to get 2 or 4 weeks worth of medication. And I can't help but think about how, if Gabriel were living on his own, there is NO way he would be able to jump through all these hoops to get his meds. There's the lack of motivation, there's the poor memory, there's the lack of transportation. He would have been off his meds long ago if it were up to him to get them.

So the next time you see some expert, wringing his hands on the news after some tragedy, talking about how "those people" won't take their meds, call up the local news affliliate and tell them that the system bears a large share of the responsibility.

Introduction, part three

Now I turn to my "kids" who have chosen not to be part of my life. I'll try to be as diplomatic as I can, but understand I am sometimes very (dare I say it?) bitter about their rejection after I did so much for them.

Leslie, now 23, came to us from Korea at the age of 3. As you can see from her picture, her circumstances in Korea were pretty dire and her future likewise was pretty bleak. She has severe cerebral palsy and is totally dependent on others for all her personal care. She is also intelligent. When she was about to enter kindergarten, I insisted that the school district educate her in regular classes, which at the time had basically never been done in our school district. She now lives on her own with a part-time caregiver to help her and she attends community college.

Hollis, now 24, also came from Korea at age 3. He has mild cerebral palsy and has many indications of Fetal Alcohol Effect, namely poor cause and effect thinking and an inability to learn from his experiences. He works in a nursing home and lives with his brother Cedric.

Cedric, now 25, was also adopted at age 3. He has spina bifida. He does not work but lives on his own with Hollis.

Kristina, now 26, came from Russia at the age of 11. Her history and some of her personality traits also indicate the possibility of Fetal Alcohol Effect. She definitely had attachment disorder, and never bonded with me and never even referred to me as her mother (in conversation she referred to me simply as "she"). She could never forgive me for taking her from Russia and her favorite housemother, even though the housemother was desperate that Kristina be adopted because "there is only one future for a girl with black skin."

Misha, now 23, came from Russia at the age of 10. He was born with a form of dwarfism and had gone straight from the maternity hospital to a baby home (orphanage for kids under age 3). He stayed there until he was 10, because the director knew that the next and last stop for Misha would be a bleak institution for "invalids." He lives on his own and works at a movie theater.

Sergei, now 26, came to us one month shy of his 15th birthday. Like Kristina, he had been in children's homes since the age of 1, abandoned because he was biracial. He is a highly intelligent young man, but his emotional scars from being abandoned and from the devastating effects of Russia's racism run deep.

Suffice it to say that early neglect, abandonment, and abuse took their toll on these kids. And parenting them definitely took a toll on me. I was assaulted and emotionally abused. One child threatened to burn down my house (we found matches squirreled away in his drawer). For many of them, I was the convenient target for all the anger they felt for their birthmothers. All I can say is that I did the best I could, and the one small comfort I have is that the 5 who came from other countries got the opportunity to get an education which they never would have had in their home countries.

Introduction, part two

And, continuing the introductions:

Gabriel, about to turn 22 at the end of this month, came to me at the age of 5 months...the only one of my children who came to me as an infant. So, in my mind, he's always been my "baby." His birthmother was schizophrenic, so delusional that she sometimes thought she was Tina Turner, sometimes a white woman from California. She did not realize she was pregnant until she was about 8 months along, so she had still been getting injections of a powerful antipsychotic medication during the pregnancy. Gabriel appeared normal at birth, but at the age of 1 month became jittery and developed high muscle tone. Doctors suspected seizures and cerebral palsy. Over time, both diagnoses were ruled out, but they were followed by many more. As a toddler, he had speech and language delays. In elementary school, he had successive diagnoses of ADHD, obsessive compulsive disorder, depression, and Tourettes syndrome. But he was a charming, goofy kid...one speech therapist who evaluated him wrote "too cute!!!" in her observation notes. Then things got more complicated when he was in middle school. At the beginning of summer after 6th grade, I gradually came to realize that Gabriel had virtually stopped eating and was exercising for hours. He soon started to look shockingly thin. The pediatrician took a wait and see approach for a month, while Gabriel's weight continued to plummet. By the time he was admitted to an eating disorder program at a children's hospital in Dallas, he weighed 69 pounds...he'd lost about 30 pounds in a month. He was hospitalized twice, for a total of 5 months, that year. It was during his second hospitalization that the doctors diagnosed him as psychotic. But during the next 5 years, his psychosis was characterized by some skewed thinking and poor motivation. Then, in July 2006, over a weekend, he became somewhat moody and obsessive about certain thoughts. One evening, as I was walking through the den, he told me that I needed to put some curtains in the back windows, because someone was trying to kill him. When I pressed him to elaborate, he clammed up, saying, "I've said too much already...they'll kill me for sure now." He would say no more. I was unsettled, but we don't live in the best neighborhood, and I thought it was conceivable that some punk had made an idle threat. Later he came to my room, asking about police protection, whispering, closing the A/C vent. He said the people were trying to kill him because of something he had told me and Marcus at dinner a couple of nights earlier. But how would they know he had told us, I asked. He looked at me incredulously. "You don't know???? The police are in the room upstairs, listening to everything we say!" I realized that he had had a psychotic, paranoid break. Luckily I was able to convince him to go to the hospital. Incredibly, they didn't even want to keep him there and were going to just send him home. I convinced them to keep him a few hours for observation...a "few hours" turned into 7 months, as his condition quickly deteriorated and he was committed to the state hospital. I was shaken to my core. For months, he was unable to understand the simplest bit of conversation, he was so absorbed in his hallucinations. He moved unseen objects and talked with unseen people. He's been home for a year and does OK...considering. Schizophrenia has been worse than I ever expected and I am often disheartened at his present condition and fearful of his future.

Tevis, 18, came to us at the age of 16 months. Like Jesse, he had been diagnosed as having cerebral palsy and developmental delays. I have to admit, I thought that he might overcome his delays as Jesse had. But he didn't. He is moderately retarded, hyperactive, and has had severe behavior problems. He has to be supervised every waking minute, and actually during the night as well, as he wanders and gets into EVERYTHING while everyone is asleep. I decided to place him in a group home several years ago, when the school started calling me frequently to tell me to come pick him up as they couldn't handle him. I'd been through that with Marcus and knew that it was almost impossible to hold down a job under those circumstances. I wish I could manage Tevis at home, but it's not possible. He comes home several weekends a month. When he's not acting out, he's SO sweet, loves to help, and comes out with some really funny comments. After 7 years on a waiting list, he finally got on a state program that pays for a higher quality group home with only 3 residents. Tomorrow he's going with other clients on a cruise to Cozymel!

That wraps up the introductions to the kids who remain part of my life. In my next post, I'll introduce the rest of my kids...

Introduction

I started this blog with one thing in mind, but am beginning to change my idea of what it will include. When I began here, my main blog was on Yahoo 360. I considered that blog to be my personal blog, since it was on a social networking site. In my mind, the 360 blog would be the one which detailed every day events and thoughts in my life for my circle of online friends. I saw this Blogger blog as something a bit more literary, a place for some of my favorite essays and poems. But Yahoo 360 appears to be in its death throes, so I've been spending more time browsing blogs on Blogger. I've found some fascinating blogs, many of which fall into the more personal journal category. So I've decided to make this one more of a personal log, and I realized that, if I'm going to do that, I ought to introduce folks to the cast of characters who might be appearing here.

In my earlier post of my obituary, I've already given an overview of myself, so I'll move on to my 10 "kids." First I'll introduce you to the kids who remain an active part of my life:

Jesse, 28, was adopted when he was 2o months old. He had a diagnosis of cerebral palsy and was considered mentally delayed as well.

Well, yes, he did have mild cerebral palsy, but he turned out to have an IQ in the superior range. By fourth grade, his vocabulary and reading skills were on a college level. But he never did that well in school, and by the time he was 11, he began to display serious behavioral problems. This was a long time ago, and not that much was known about attachment disorder, so I had not realized the serious effects of his early life experiences: born 10 weeks premature to a teen who had already planned on giving him up for adoption, spending months in NICU with no one to bond with, moved to a foster home and then to another a year later. I would later learn much, much more about attachment disorder. So he acted out, ran away, got involved with drugs, etc. He spent some time in residential treatment, got kicked out, came home, and ran away for good, eventually living with a much older partner. He cared for this man several years as he battled AIDS and cancer. When his partner passed away, Jesse went through a rough period, hooked on painkillers. But a couple of years ago, he suddenly decided to get his life together. He got his GED and enrolled in cosmetology school. He graduated a year later...the longest he'd ever stuck with anything! He's currently working full-time as a stylist. He has long been destined for this vocation. When he was 2 or 3, he was obsessed with Snow White. He dressed up like her, listened to the soundtrack for hours, staring at the pictured 33 rpm album spinning on his Fisher-Price record player, even went so far as to offer a plastic apple to a stranger in a doctor's office waiting room, saying, "Would you like a bite of my poison apple?" But at the age of 4, Snow White gave way to Cindi Lauper. He brought home a little book of nursery rhymes he made at preschool, with a memeographed page for each rhyme. Jack B Nimble had flaming red hair. "That's Cindi Lauper/Jack B Nimble!" he explained. Each time I see Jesse now, his hair is a different color, sometimes purple, sometimes blond, and, yes, sometimes Cindi Lauper red.

Marcus, now 27, came to me at the age of 3, ten months after he had been brought to the ER semicomatose, with a severe traumatic brain injury, 3rd degree burns, detached retinas, and broken-out teeth. This severe battering was the culmination of 2 years of ever increasing abuse at the hands of his birth mother. Tragically, CPS had had an open case on Marcus and his twin brother most of that time, but chose to leave them in the home, in spite of both boys having broken bones, numerous bruises, and increasing signs of emotional disturbance. Marcus' injuries left him legally blind, paralyzed on his right side, and with severe learning problems. He was also prone to unpredictable fits of rage, due both to the brain injury and to the emotional scars of the abuse. But for many months, each night I would rock him, and the bond of trust between us grew strong. At home, he was loving and playful, but at school he was often withdrawn, electively mute, and unpredictable. When he was in 4th grade, his PTSD reached its peak, and he began running away from school in a blind rage (and the school just let him go!). So I quit my full-time job and homeschooled him during his middle school years. It turned out to be the right thing for him. He felt secure and safe at home and was able to work through his PTSD. By the time he returned to high school in a vocational program for disabled students, he was mellow, got along with everyone, and, according to his teacher, was like her personal assistant, he was so helpful. At last the rest of the world saw the Marcus I had always known! Marcus lives at home and would like work, but hasn't had any luck finding employment. He developed seizures a few years ago and just had 2 operations on his foot, so medical issues still affect him. Of all my children, Marcus is the kindest, most loving one, so amazing when you consider the horror of his first two years.

Well, this introduction will obviously take a while, so I think I'll do it in installments. So...to be continued.

A moment of despair

I lost it last night. I'm talking free-flowing tears and the occasional sob. And what brought me to this point? A box of laundry detergent.

Let me explain. I came in from work with aching legs and fairly exhausted after staying up until 3 AM to finish my paperwork. The first thing Gabriel said to me was, "I was going to do my laundry, but I couldn't get the box of soap open." I struggled to contain my overwhelming feelings of frustration. This isn't the first time this has happened. I have shown him several times how to pull the paper tab and pull the strip around the top of the box. I showed him once again. All evening long that box stood as a symbol of what the schizophrenia has taken from him. And, finally, after he went to bed early, I dissolved into tears of despair.

When most folks think of schizophrenia, they think of the "positive" symptoms: hallucinations, paranoia, delusions. And, believe me, Gabriel has had his share of those. He reluctantly admits that he still hears voices on a daily basis. But it is the "negative" symptoms that are the insidious, truly debilitating aspect of the illness. There's the lack of motivation, the flat affect, the lack of social skills, the neglect for basic hygeine...and most of all, there's the cognitive deterioration. Reasoning, memory, problem solving...all of these have suffered. One day I can spend 10 minutes telling Gabriel how our dog Blossom did at her obedience class, and the next day he asks me, "How did Blossom do at her class?" It's sort of like watching a 21 year old suffering the early effects of Alzheimers. It's so depressing and brings such a sense of loss.

And it's so frustrating to know that no one is addressing these major problems of his. MHMR dispenses medication and does the required bloodwork, and that's about it. I've researched online for resources. There's a program that sounds really comprehensive, with cognitive retraining, transitional living programs, family programs, etc...but it's in Connecticut. I did find a clinical research project being conducted by the NIMH in Bethesda, which is recruiting volunteers. The focus of the research is to determine the extent to which cognitive deficits are the result of the disease or the result of the medications' side effects. While the research isn't aimed at improving the lot of the individual participants, the volunteers will benefit from the expertise of the NIMH professionals and the programming there. I haven't yet proposed to Gabriel that he should volunteer. I don't have very high hopes that he will. First, he has little self-awareness of his condition or his limitations. Second, I think it will be difficult to convince him to voluntarily return to a hospital setting for six months. I keep waiting for a good time to broach the subject. Perhaps last night's episode with the detergent box would have been a good opening...

Sunday mornings

Yesterday, as I was out running some errands, doing a bit of shopping and picking up prescriptions, I found myself reflecting on Sunday mornings. As I looked back on so many years, those Sunday mornings seemed to be the chronicle of my life.

My spiritual journey is represented by the succession of churches I attended over the years. Unitarian, Quaker, Lutheran, Methodist...various expressions of faith, until at last my faith faltered. As a single person I found Sunday mornings a retreat into the sublime. As a single mother, I often found them to be an exercise in strained patience, as I struggled to get everyone ready and out the door and to make them behave during the service. (I don't miss those days!)

I remember having a definite leisurely ritual on Sunday mornings, with a steaming cup of coffee and my Sunday paper. But gradually that ritual faded, as the internet took the place of my paper.

Sunday mornings often meant excursions...to Dinosaur Valley, to the dog park, to the zoo.

That leisurely feel of Sunday mornings often offered the time to get in touch with loved ones. For many years, I would frequently talk with my friend Donna (also a single adoptive mother) for hours, catching up on the week's events and the latest frustrations with our kids. For a period of time a few years ago, Sunday morning was the time I wrote lengthy letters to my son in prison.

In more energetic days, Sundays would find me on some back road, gathering rocks to build flower beds. Or I would spend long hours working in my yard, planting and mowing and mulching.

And so, what do Sunday mornings represent in my life now? I see a certain emptiness...the loss of faith, the isolation, the lack of energy and motivation. They often evoke frustration with myself, as I see another weekend slipping by with so little accomplished. They are often a time when worries about Gabriel and my mother will not be silent in my mind. Hopefully this is just a phase, another detour on the journey...

Poem for World AIDS Day

The first time I met him, I knew
That I had met AIDS face to face.
His body, gaunt and stooped,
His eyes, like those of a frightened deer,
Silently conveyed the untold secret.
In time, his partner, my son,
Told me what I already knew.
He came to know another world
Of hospitals, drugs, blood tests, and
The constant reminder of mortality.
They managed mostly on their own,
Both accustomed to life on the edge.
I helped when I could, it wasn’t much…
An air-conditioner, some groceries,
Help with the laundry, a bit of cash.
They found a house to renovate,
The work and the dream seemed to challenge
The very thought of mortality.
The house was their hope and their future,
A fortress to guard life itself.
I got the call in the middle of the night,
My son, distraught, said Clay was gone.
A sudden trip to the hospital had been his last.
Fate had broken that heartfelt promise
That he would die at home.
I made the sad journey to help
With packing and moving and saying goodbye.
We drove to the house to gather Clay’s tools,
Still lying where he had left them,
Intending to return to his unfinished work.