Tuesday, September 29, 2009

Observations from the Field

Okay, so let's do another status check. At this juncture, we're staring at three months now since we lost our oldest daughter. So far, I have been sick, not just sniffly sick, but really gut wrenching, aches and pain sick three times. I'm not sure why, but my immune system is seemingly kaput. There is another woman in our office who is undergoing cancer treatment and is, as a result, susceptible to everything. She asked our help to keep her away from errant germs by telling her if we're under the weather so she can take precautions and where a mask. I had to stick a note on her cube early this morning, making sure to pin it up there before she got there and could be exposed to anything. I felt a little like Typhoid Mary. Every time I sneezed I worried about what I was spewing out there, but staying home wasn't really an option.

I was watching King Kong for a while tonight while I answered e-mails because I couldn't get a particular scene out of my head all day. I kept thinking about the scene where the men were on the island running along with the stampeding dinosaurs being chased by Velociraptors and round a corner to find themselves skirting a high ledge. It's actually a bad scene in a good movie. One of the few times in a Peter Jackson movie where I can tell I'm watching special effects (since he got the big budgets anyway), but it seems apropos to my life here at home. I feel as though I'm running along a ledge, ready to have something push me over at any moment or, failing that, eat me for a snack. I have no control over my own actions. This may be in part because my husband is right: I have filled my plate way too full. His comment the other day was that I can't seem to leave myself a spare moment. My assignment from our grief counselor was to take it easy and just relax twenty minutes each day. I did him one better on Saturday and sat placidly throughout the entire Penn State game. Then, the next day I sat all the way through the Steeler game, only not so placidly. Look where that got me. Both teams lost games they shouldn't have. So, I have to say, relaxation seems overrated.

I'm a little thin skinned these days. More so than early on I think - maybe others would not agree. I'm not sure why exactly, but suspect it has to do with being tired, over-taxed, sick and my Steelers are 1-2. I find myself snapping at the dogs - who loyally stand by and take whatever I dish out. If they're hurt by my actions, they don't let on. Cheyenne, my closest companion, just seems to take it as her queue to snuggle closer and try and comfort me. That usually shames me into behaving better for a while, and leaves me covered in dog fur for my troubles. The thing about animals is they don't give up on you. I need to remember that and not give up on them either.

I think the other thing that has me a little stressed is that life is marching inexorably on, and I'm not really ready to jump all the way back in yet. But, to a large extent, I have no choice. My mother's condition requires a lot of attention. I whined at my case manager yesterday about the number of calls I have to take at work about her (I was contacted five separate times yesterday alone). She didn't really have any words of comfort, just reality. At Mother's age and in her particular condition, that is not going to stop. With the sudden rains, the yard, all nearly two acres of it, needs mowed, but it gets dark earlier, so it's getting mowed in stages - by the time I get all the way around, I'll have to start over again. And why didn't I stay in Montana where the grass would be dormant by now? There are bills to pay and groceries to buy and affairs to handle. But, I don't think the fact that I'd really rather not matters to anyone but me and probably Greg, but life just won't put on the brakes for me. It vexes me. Or at least it does today. But, try as I might to dig in and tackle all of these things, I seem stuck in quick sand. I struggle and struggle, but only seem to sink further and further behind. As a result, I think I'm vexing people back. I think the people who expect or need me to be there for them are getting a little impatient with my ineptitude (my word, not theirs). Maybe it's just me, and they are far from it. I think I project my own sense of failure onto the words and actions of others, and read more into it than is really there. It's something I've always had to be mindful of, but everything seems exaggerated at the moment.

And then there's Greg. We're skirting that same edge on Skull Island, but as often happens in a panic situation, it's every man for himself. He's really struggling with anger and guilt. He misses his daughter. A lot. Occasionally, that frustration snaps in my direction. I'm not all that understanding anymore when it does. Nor do I care all that much if that hurts him. He seems to forget, I tell myself in a self righteous huff, that I lost a daughter too. So, we live separate lives under the same roof more lately. I know he hurts, I just don't have much left to give him.

Tomorrow I may feel differently. I may be able to step back from the precipice a little and find something to laugh at or enjoy (although, I have to tell you, at 1-2, that's not all that likely), but even that will seem arbitrary and out of my control because I know another evening like this one will be lurking somewhere. Some days are better than others? In actuality, for a grieving parent, I think the better term is some days are worse than others. But, I think it's important to chronicle these down times as well as the little upward trends. I think I want every parent to know what it is to feel what I feel so they can cherish their sons and daughters a little more. This sucks, ladies and gentlemen. Don't get on this roller coaster ride if you can help it. Be a better parent. Better than what? Better everyday than you were the day before. Better than Greg or I. Better than you think you can be. To avoid a night like this one, it will be worth the effort.

Sunday, September 27, 2009

And Then There Were Two

I have to say that I have approached this blog with the philosophy that Kelsey's story is now mine to tell, as though she abdicated it to me. I feel speaking out about her and how we handled her disease (or didn't handle it, as the case may be) is what I have to offer to other parents, and that I have an obligation to put it out there. I need to tell it for my own sake, there is no doubt; to work it out, spit it out, deal with it and then to move on from it if I can. But, in addition, I truly hope some parent comes to me someday and says their son or daughter is on the way to recovery partially because of something I said or wrote. That I somehow spurred them to act where they might not have done so otherwise. That's my little dream. But, with Marissa, her life is still, thankfully, playing out. So, I figure I should allow her a measure of privacy and not go into the complete gory details of her teenage years without her permission. I believe I can tell you about the parenting side and the things we went through together, and you can allow your imagination to fill in some of the details I don't feel she would want me to write out. The thing about it is, if you can imagine it, she probably did it. This sweet, diminutive, doe eyed girl fell down a very deep, dark hole for a long time. Whenever we would introduce ourselves to a new group in her various treatments, there was an audible shock when she would tell her brief history. Parents, particular fathers I noticed, would come up to me afterwards and ask if it was true. They seemed to find it hard to believe that such an angelic creature could be in that fix.

Most of you who know me know her as well, and vice-versa, since, perhaps oddly, her struggles never pushed us apart, and hence you probably know most of it anyway. Where Kelsey rebelled and pushed herself away from us, Marissa never really did. Different personalities coupled with us being in a different place in our own evolution as parents. None of us left in our family are blind to the reality that Marissa received some advantages to Kelsey's having blazed a trail. Of course, we still made mistakes. Early on, when Marissa's actions were more episodic than truly addictive, I reacted in my typical totally clueless manner. I think I may have even said to her, "I can't believe you're doing this to me." If I didn't say it, I thought it. And, let me be clear here, I am now very well aware that neither of my two daughters were trying to do anything to their father or me. They were merely trying to struggle through issues and feelings that they were way too young to handle or understand coupled with addictive personalities. And, then, as I think I've touched on before, once I did catch a clue that my children needed me more than they needed to know I was a successful businesswoman, I swung the pendulum too far the other way. Marissa and I have often joked that if you look up the definition of co-dependent in the dictionary, our pictures would be there. She would tend to retire into isolation to try and avoid placing herself in situations where she knew she would be tempted to relapse. I, for my part, am naturally shy and will tend to retreat to a very small world if I let myself. So, we would be each other's company, doing just about everything together. Of all the things I've worked on as a parent of troubled teens, that's been the hardest. Keeping her close seemed to be the safest thing to do. But, trying to let go of that led her to choose initially a college clear across the country and now, even though she's enrolled locally, it was a no-brainer that we would place her in the dorm. I'm not all that anxious to work through my co-dependent issues right now, but her young life has been interrupted enough by all of this, and she needs to spread her wings a little and live her own life. Ironically (notice I use that word a lot - our lives seemed filled with irony), she engaged in the most dangerous of her activities right under my nose in this very house. So, keeping her close didn't really work for us. Having her enrolled in a Lutheran private college seems to be the better option.

I will say this about my daughters and their addictions of choice: they both dabbled with an array of things to try and self medicate, if you will. Kelsey, in the end, chose the eating disorder as what suited her best. She still had issues controlling alcohol, she still cut, and she dabbled in drugs probably more than I knew, and I knew enough. And everything was exaggerated because her health was so compromised because of the bulimia. Marissa, on the other hand, chose another path. But, not before dabbling in all those behaviors first. That natural competitiveness in them turned dark and deadly. In probably the most complex twist in our family dynamic, the two girls who truly loved one another more than anything or anyone else in the world and hated to see the other one suffer, were constantly trying to one-up each other. Whatever bad, self-destructive thing Kelsey would find to do, Marissa would up the ante. And their father and I were scrambling around trying to pick up the pieces and keep them breathing. It would not have been easy even if we had better parenting skills from the beginning. And obviously, in the end, we didn't succeed. Those were dark days. I always was grateful for Mother's stubborn sense of independence back then. Adding her care to the mix would have done me in. As it was, I neglected her in ways I would like to think I would not have otherwise done. I am paying the price for that stubborn streak now, but I know it kept me from just caving in for a long time, so I remain thankful.

You know, often in the last year, friends have said to me, most sincerely, "God only gives what you what have the strength to handle." My response has consistently been, "I think God over-estimates my strength." I would like to submit a vacation request to God to quit giving me things to "handle" for a little while. But, I think the response might be that I need to make do with the little gifts I get, like two Super Bowl titles in the last half decade, and continue to walk the path I was meant to walk, no matter how rocky it is. So, maybe I'll modify the request to just ask for a little help with my fantasy league team this week. Being in last place isn't helping my coping skills any.

Thursday, September 24, 2009

When Roles Reverse

There comes a time and a place when a daughter has to realize that her mother is now in her charge. Unfortunately, as I have experienced, the mother may be a little slower to realize or accept it than the daughter and the rest of society is, but that won't change the fact of it, just how easy or hard it may be to accomplish. Hopefully, it will come at a time when you have lived your own life for a while, raised your kids, had your career and have the maturity and patience to face the task at hand. Of course, things do tend to happen. Illness or an accident, for instance, can cause the timing to accelerate. But, when the roles reverse before the daughter has hit puberty, then that's a real problem. And it happens. You know it does. If you think about it, you probably know a situation that fits the bill. Maybe it's not a mother-daughter scenario, but some situation where at least one of the children is taking on tasks that are above what most of their peers are doing. You may even admire them for it and say something about, "Little [fill in blank] seems so grown up, how she takes care of the dishes and the laundry." Or, "I saw [fill in blank] cooking dinner for her family. Her mother says she does it all the time." Don't get me wrong, having chores and responsibility is a good thing. But, judge it based on where the parent is in that scenario. If the parent is there teaching the child to cook side-by-side, or close by doing another task keeping an eye on things so the child can feel a sense of accomplishment, then awesome! If you saw that child cooking dinner with no adult in sight because that's the only way the family is going to get something to eat that doesn't come out of a bag with Lays on it, then it's not so awesome. And, as I write, there are children all over this country doing just that. When you read that, does your mind leap to children of parents living in some inner city housing project, who are on crack or alcoholics? Probably. At one point, that's where my mind would have taken me, envisioning a scene straight out of Hill Street Blues, not Round Rock, Texas. But, look a little closer to home. It happens to perfectly "respectable families". Sometimes it happens because there is a trauma in the household and the parent(s) collapse under the stress. Sometimes for no other reason than the parent just flat out isn't around. Maybe it's both.

That's what happened to Marissa. As we began the long journey with Kelsey and chaos began to reign down, we didn't respond well. Top that off with a demanding career, and the fragile order of the household tipped upside down. Marissa stepped in to pick up the pieces. I remember one day in particular when I had to pick Kelsey up from school because she was stoned out of her mind on some pills she got from somebody. Marissa was home when we got there. I was livid and scared all at the same time. Kelsey tripped on the way up the stairs, so Marissa helped her upstairs. I collapsed on the couch. So Marissa came down and made me some tea. I was proud of her for being so grown up. She was 11. This is just one story of many I could tell. The youngest, smallest person in the house was the only one for a while who was big enough to try and keep us going.

I know better now. I have no statistics to back up my view, but I can tell you as sure as I can tell you that I love the Steelers that kids who are forced to grow up too soon will suffer for it. Growing pains, you might say. I had a responsibility to parent my children, not the other way around. For a while, I lost site of that. Marissa has paid a pretty large price for that over the years.

Think about some of the other, larger than life stories that we all know if you're still not convinced. Michael Jackson was the big money ticket for his family. He certainly wasn't the picture of normal. Lindsay Lohan carried her family, and she seems far from well adjusted. The Hollywood stories like that go on and on. Bottom line is that if children are not allowed to be children and mature naturally and in the due course of time, something will go awry. They will grow up and try to capture a lost youth, like Michael Jackson seemed to do with wild, bizarre excess. Or, the pressure of trying to handle scenarios way beyond their maturity level will cause them to break apart at some point. I've seen children in similar situations to Marissa act out when they've had enough, sink into deep depression, look to drugs, alcohol or engage in risky behavior. Or, worst case, all of the above. They aren't ready to be adults, and at some point they're going to show that to the parents who have left them in that role. Trust me. I don't have a study to back it up. There is not a Ph.D. behind my name. But, on this subject, I am completely solid. I cannot repeat it enough; your minor child cannot be your parent. It is a major mistake if they are.

Monday, September 21, 2009

The Complicated Lives of Women

I was glad that the pool was still warm enough that I could swim tonight. I've found this summer that I like being in the pool when I'm sad because no one can really tell that you're crying, even yourself. And today was a hard day that resulted in a few bitter tears. For one, Mother gave me a run for my money today when she called not once, not twice, but three times, livid over her companion. She was demanding that the woman be removed immediately and that she wasn't going to pay for someone to keep her company. Of course, she has had a companion without complaint for the past three weeks now, but today a new, younger girl was present, and she must have said something that set Mother off. The whole tirade was too reminiscent of my last few years with her. She has been often petulant, petty, threatening and stubborn to her own detriment. What I didn't understand initially is that her behavior, which often was like that of a toddler going through the Terrible Two's, was in fact pretty close to just that. Her dementia, which just this last week was officially diagnosed as Alzheimer's, has been regressing her backwards steadily to a point where "Big Baby" isn't that far off the mark. Of course, the difference between a toddler and an elder adult is that the toddler never worked as a Rosie the Riveter, never was a nurse working in emergency rooms, or waited for a husband off fighting two wars, never had to suffer through seven miscarriages, and then had to face the reality that she would only be able to be a mother herself by taking in someone else's child. A toddler has never had those experiences so he or she doesn't have the same incentive to try and hang on to an independence he or she has never had. I should have been more attuned to what was happening, but what I was, sad to say, was just upset. At the time, I was struggling to try and save two daughters. I needed support and empathy, not rancor. I needed a Mother who would salve my aching wounds. What Mother needed was a caregiver who knew how to tread softly. Neither of us got what we needed. Today was just a little too much of the same.

I called the companion service and had the girl removed. They won't send someone back until Mother calls Uncle and admits she is lonely, and lonely she may be because I think my main responsibility has to be the child I actually gave birth to, not inherited via a role reversal.

I need to be a mother for my sole remaining daughter first and foremost. I worry about her health in wake of her sister's death. There was already some concern there before June, with her weight dropping noticeably for no discernible reason. Since Kelsey died, Marissa has struggled, as you might imagine, but made a sincere effort to take care of herself. But, she is unable to gain weight and now she is suffering from acute pains in her back. My natural reaction at the moment is to panic a little. I find that it doesn't take much to make me nearly hysterical with worry. At first, I felt it creeping up on me whenever either Marissa or Greg were out of my sight. The endless possibilities of what bad things could transpire would run through my head as I watched them leave and then would continue to play in my head almost like a record with a needle stuck until they returned. I worked pretty hard to get past that, but I think I need to not be so quick to squelch the panic over this one. What is it they say? Just because you're paranoid doesn't mean they're not out to get you. Just because I'm worried doesn't mean there isn't anything to worry about. And that has to be my larger concern. Mother has had her full life. This is her time to wind down. Marissa deserves a chance to ramp up and find her own path. So, I reason, as long as Mother has good care, she needs to be second in my pecking order once again.

And then, finally, I miss my oldest daughter. Our therapist warned me that I would regress from time-to-time. It began as I made signs for this weekend's garage sale. I needed a marker and knew my daughter, the artist, would have some. I pulled open one of her drawers and was greeted by her scent. Clearly, she had reached in repeated times with her perfumed hand, and the scent had been captured there in the intervening months of inactivity. Just a brief hint of Chance by Chanel as it mixed with her body chemistry without the accompanying taint of the bitter smell of the bulimia or her sweat from working in a sandwich shop because it was the only kind of job she could get as sick as she was. I closed the drawer quickly and went about the business of advertising the sale of her childhood trappings. Then, the next day, the memory of that smell still with me, I chatted up countless strangers who came to look over my varied wares, often passing up the things that meant so much to Kelsey. I actually enjoyed meeting the people who crossed my path on Saturday and was heartened by how the people who populate Middle America are still a pretty good group. I even got to hold a rare breed of parrot, who took a shine to me. But, in trying to smile and tell the story of how it came to pass that I was trying to hock my kids' childhood memories without lying but without telling the whole story either, I ended up just obsessing on the little girl I lost to a big, bad disease.

I wish I could not think about all of this and just watch the tie ball game that's on right now. But. as a woman, I have to worry about it all, I think. I seem to have no choice. It seems to be hard coded in my DNA.

Thursday, September 17, 2009

The Little Sister

Pretty much from the time I found out I was pregnant with Kelsey, it was a foregone conclusion that I would have another child. I had hated being an lo-only child. But, even had I not been set on not making my baby grow up on her own, it became almost a physical mandate at one point. About the time Kelsey was about two, I began to have almost physical longings to become pregnant again. I would see women in the street or at the store who were pregnant and feel real longing and jealousy. People who grew up with me would find that an amazing statement. I was hardly naturally maternal, but once those hormones hit, they hit with a vengeance. And, I would watch Kelsey playing alone in the yard or with her toys in the evening and I just knew I could not make her grow up without a little brother or sister. I loved her so much, I wanted another one just like her. A week after her third birthday, I gave her a sister. Marissa Pearl.

But, of course, like a strong willed toddler, Kelsey had issues with the new gift I labored to give her. She never was mean to the new baby, that would come later, but she gave me a real run for my money, and I got my first taste of what a hard headed child I had on my hands. My relationship with her shifted from the moment she came to visit in the hospital, but even if I had foreseen that, I would not have wavered from my goal: I did not want her growing up an only child.

From the first, she and her sister had very unique personalities. While we all have to guess which baby is which in the old photos - we tell by what we all are wearing in the picture - Kelsey was independent and stubborn, Marissa was more mellow. Kelsey was fiercely attached to certain toys (she had a Mister Bear that she could not be separated from without dire consequences), but Marissa never settled in on any one toy for any length of time. Kelsey refused to wear anything but dresses. Marissa, who had one famous meltdown in Target over an outfit, was in general not so picky. Kelsey slept in her own room with no problem and happily went off with relatives for play dates. Marissa refused to sleep in her crib and was so inconsolable whenever one of us were not around that even family members refused to babysit for her. Kelsey was a neat freak. Marissa had toys and clothes scattered all over the house. Physically it became clear that Kelsey was destined to be tall with an athletic build, while Marissa was petite. Kelsey was Daddy's Darling. Marissa was a Mommy's Girl.

But, they were related and part of the same family with the same mother, and the sibling dynamic, particularly between sisters, was something I had no experience in. I had seen it at work only from afar. As intent as I was to make sure I did not raise an only child, I had no real idea how to do anything else. So, they had to forge their own relationship, and it was natural that they fought. Over toys at first. Later, over I don't what all. They both told the story of the last time they were physical in their conflict. Apparently, some time not too long after we moved into our current house, Kelsey pushed Marissa down the stairs. Kelsey admitted that it scared her so badly that nothing like that ever happened again. But, they remained competitive. Very. And, in this arena I will not fault myself too much, because I truly don't think any parent comes out of the experience unscathed. The ice is too thin. The desire to make sure each child has the same opportunities is tantamount, but at the same time you want the individual child to feel they are special at something. When Marissa followed Kelsey into figure skating and excelled at it, it was hard to know how to feel. Marissa will tell you now that she did as well as she did because she spent time observing her older sister, so she had a step up on her peers. But Kelsey saw it as a threat. So, when Marissa decided to pull herself out and pursue dance, it was with a vague sigh of relief that we rolled with it, despite despairing that she was throwing away that obvious potential. Figure skating was Kelsey's arena in the end. But, what if Marissa had loved it and wanted to stick with it? Kelsey would have resented it. And what would have been the right call then? I watched the two Kwan sisters skate for a number of years, but it is Michelle Kwan whom we all know and love. What does her older sister really think about all of that? I would imagine even the best parents trip over that fine line and siblings end up thinking that "Mother loved you best" no matter what. Greg and I muddled along as best we could with such complex issues, hoping that we'd make the right decisions almost in spite of ourselves.

When Kelsey began her tail spin and began to absorb all of our attention, negative as it may have been, Marissa was left in the wake, fending for herself at a tricky time in her own development. One rather huge point I left out of the post I wrote some weeks ago about my parenting tips was this one: if you ever say to yourself, "At least I don't have to worry about [fill in blank] ." Then [fill in blank] is the child you really need to worry about. And, trust me on this one, [fill in blank] will find a way to regain your attention. To their own peril maybe. As this pertains to Marissa, that is a story that I will elaborate further, Dear Reader, so stay tuned. But, for now, let me close with this: as hard and complex as their dynamic was, there was never any doubt that my two daughters loved one another. They could shove one another around, but let anyone else try it, well hell hath no fury... Kelsey loved her sister more than anything or anyone else in the world. My guess is that Diva cat of hers came next, and the rest of us fell somewhere far behind. I am okay with that. It's the way I wanted it. But, what I expected and really wanted, is that my two daughters would grow old in one another's company, and it would be the two of them that spread my ashes. Now that burden falls on Marissa alone. Marissa, for that and for so much more, I am so sorry.

Monday, September 14, 2009

Money Makes the World Go Round

I was invited to attend a meeting of a fledgling non-profit support group focusing on eating disorders called "AFED" (Austin Foundation for Eating Disorders). The meeting was held at an eating disorder treatment facility located on Bee Caves Road in southwest Austin. For those of you who know the town, it will come as no surprise to you that, as I looked around for the address, initially missing the chic little area set back in the woods from the street, I was passing and being passed by a plethora of luxury sedans. It was almost to the point where the couple of Toyotas and Hyundais I saw looked out of place. Probably the help on their way home, I thought to myself. I couldn't help but notice that most of the vehicles were dark in color; black or a charcoal grey. I smiled a little at that, as though they were trying to convey, "We know the economy is bad, so we'll choose a somber color for our big car to show how seriously we take it." At least my little Forester is the right color, so I felt only vaguely out of place. This is one of the areas where Big Money lives in Austin. Not that I protest to people having Big Amounts of Money. I would like to myself. But, it struck me how not unusual it is for a treatment center to be situated in a high dollar area of town. Kelsey spent two stints at a treatment center in an area of St. Louis called University City, which is a stately area full of historical homes and peaceful parks, large stone churches and synagogues. You can almost smell the old money in the air. There was a girl enrolled at the same time as Kelsey who had both a "summer" and a "winter" car, both something rather posh, although I've forgotten what - not that Kelsey didn't tell me a time or two, a chip forming on her shoulder. A lot of the girls I met while she was there came from affluent backgrounds, so it is not surprising that clinics open up where their clientele are likely to come from and are most comfortable. And, I believe when most people think of eating disorders, they think of the big, wealthy names they associate with it: the Olsen twin (was it Mary Kate or Ashley?) and Nicole Ritchie to name two prevalent names in my daughter's day.

But, I don't believe that is representative of the individuals who suffer from this disease at all. It is just representative of the individuals who can afford to get help. Take for instance the young woman who invited me to the meeting. This fledgling foundation is her baby, as near as I can tell. She is trying to get it started out of her own experiences when she had to raise donations in order to afford her treatment. As another example, there was the woman whom I met when Kelsey was at McCallum Place who had to leave there shortly after I met her when her insurance ran out. When I saw her, her complexion was nearly gray, she was wrapped in a blanket despite the spring air, her smile, weak as it was, revealed ruined teeth, her face lined already due to dehydration even though she was in her mid-twenties, and even under the blanket, it was clear her gray skin clung directly to bone. Bluntly, I knew I was looking at a woman at the bitter edge of hope. One look at her told you what you needed to know: without intensive residential treatment she would die. She did, less than a month after leaving the facility. Maybe they could not have helped her, but the insurance company, in my opinion, signed her death warrant the day they stopped coverage for residential treatment. She couldn't afford it on her own. Then there was the woman I met at the state capitol when we all gathered to support legislation, albeit with no success, for increased insurance coverage. As we sat and waited for a press conference we were supposed to lend support to, our job to look sincere and supportive, she told me the story of how she paid for six month's worth of treatment by using all her retirement and then working through her son's college fund. The featured speakers that day were a family who had exhausted their retirement to send their daughter to treatment. Within the year, we had joined that group as having exhausted everything we had worked for years to squirrel away. And we were all the lucky ones. We had something to exhaust. I often wonder what happens to those who simply don't have anything.

Bottom line is this: I think the perception is that this is a rich girl's disease. I won't discount even my own perception that there are some stressors on the social elite that cause them to be prone to an eating disorder as how their personal inner turmoil manifests itself. But, I think the public gets a skewed impression because the stories that make big news are about female celebrities, and the people they meet who are in recovery are often well-to-do. That's because they can afford to recover. And, once they do, they are often more vocal about what they experienced. Men and women of more modest means tend to get past it somehow and then have to hunker down to make a living. They have no time for fund raisers or awareness groups, they have bills to pay. That is, of course, if they survive it.

At the same time, I am not critical of how much it costs to treat the disease. That probably surprises some people, but I ran a business. My mind naturally clicked off the overhead as I toured McCallum Place for the first time. Think about it. Trained staff have to be present 24/7/365. And not just "trained", but nurses with a specific understanding of the mental mindset they are up against. The residents (remember, men suffer too) have to be fed healthy, well rounded meals, so add chef and nutritionist to the staff. They need appropriate physical activity, so add a trainer. Then you have to figure out something to do with them to keep them active and engaged, so add in the costs of transportation and activities. They have to be housed. And then there are the therapists. You can feed someone, house them, teach them yoga, but what good is it if you they don't figure out how to live in the world without their disease. And, last, but not least, is the accounting staff. The people who work with the insurance companies. And, let's just be real, these are businesses. They are in it to make a profit. I was in business for the same goal. I never resented that aspect of it. I think some facilities are a little more high brow and their profit margin correspondingly so, but those are the places Kelsey would have bumped into that Olsen twin whose name I can't recall. It's not where we sent her. I have no bone to pick with the per day cost of either facility Kelsey went to. What I have a problem with is us taking so long to act on her situation that residential treatment was the only viable option. I have a problem that there aren't ways for working class families to treat their loved ones without breaking the bank. I have a problem with big insurance.

I cried the other night when President Obama spoke about never having to turn to a loved one and say that you can't afford to treat them. Kelsey's last year was exactly that. We saw how bad she was. She knew how bad she was. She admitted it more than once. She asked for help. She yelled for help. But, after three previous attempts, we were tapped out. Tapped out as it pertains to the big dollars it takes to treat this tricky issue anyway.

I know it's not that simple. We called old contacts for favors, and they offered to help, but then she wouldn't follow up. As much as she hated it, she was so entrenched in her disease, she couldn't imagine life without it. So, she sabotaged what meager efforts we came up with. But, in the end, as I watched a Mercedes, then a Lexus, then a big, black shiny Suburban, I wondered what I could have done with the money it took to buy just one of those cars and sighed because, really, maybe not that much. I patted my trusty Subaru on the dash, glad to have her there with me, and found the meeting.

Sunday, September 13, 2009

Reflections on an Empty Nest

About this time last year, after I had dropped Marissa off at college in North Carolina, a well-meaning individual offered their sympathy over our adjustment to an empty nest. Greg and I had a chuckle over that one morning when we met nearby for breakfast. Two things were wrong with that person's perception at the time. For one, our nest wasn't empty. Kelsey had moved back in and brought all the old tension and worries that we had struggled with for years back with her. It was as though, as soon as she moved back in, we all regressed a step or two, and it had been a strain. For another, we actually were anxious for an empty house. We wanted the time to ourselves to be perfectly honest. We were both exhausted by the last eight years. But, more altruistically, if we could get both girls living independently at the same time, then we could take some hope that all the struggles over those years were worth it. But, in the meantime, we had almost snuck out of the house for a little quiet time to ourselves that particular morning.

Be careful what you wish for. We moved Marissa back into a dorm three weekends ago and suddenly we are the true Empty Nesters we fantasized about that long ago morning. For a while, even after Marissa had another official place to live, she was back here so often or I was there with her, that we were probably seeing one another more than when this was where her pillow was. But, I didn't hear from her at all on Friday, and saw her only fleetingly yesterday. She is doing what we hoped for, it appears; moving on with her life and beginning to cut the cord that has existed between her and I since her very beginning. I know this is what is supposed to happen. For that reason, I am happy, but it will take some adjusting to on my part. So, finally, the house is quiet. And really quiet it is. Of course, it is hardly empty. Eight dogs, two cats and one fish are always here. But, while they cause a ruckus some of the time, they generally like holding down the sofa for most of the day.

One thing I've learned, even as I've turned a corner on my most deep grief is that I've lost the ability to enjoy that quiet. Over the years, I loved having the house to just me and the pets. It so rarely happened. I loved those stolen moments of being able to do whatever I wanted. Dance around like an idiot to rock from my youth. Curl up in corner and read a book. Watch a World War II movie I've seen a 100 times without listening to, "I can't believe you're watching that again." The possibilities were endless, the opportunities not so. But, now, suddenly, I find I hate being in the house alone. I hate that pounding quiet. Only because of how I came to earn it, I know, but there it is.

This is not a ghost story. I have no odd occurrences to report. No odd bumps in the night. Nothing ends up in places it wasn't before. I think I might actually take some comfort in that. But, the void is complete. So when Greg announced yesterday that he was going to a friend's house to watch the game and there was no ensuing invitation for me to join him, I panicked a little. I spent the day trying not to be upset and hurt, with mixed results. But, as he left today, I couldn't help but be catty about it in what was definitely not my proudest moment. I didn't want to take away his chance at a little break from his own pain, but I didn't want to face the long hours alone in the house.

I have plenty to do. I really need to be here working off a long list of pressing items. And that's what I'll do. But, I was mixing up a batch of pumpkin cookies as he left. I have made that recipe since I was a girl. I'm known for them; I never mess them up. They are a complete disaster. I need them for a meeting tomorrow, but I'm not sure I can use them. Not sure what I did wrong, but my composure was shaken to the point that I either left something out or added too much of something else, but they flattened out on me and don't taste quite like they always do. What a mess.

But, the long and short of it is that he left and here I sit, with eight sleeping dogs all around me. So, I turned the television up, and I'll concentrate on working through my to-do list while keeping one eye on the Browns, the Bengals and the Ravens, hoping they all lose and at least give me that much comfort. It did occur to me that maybe the reason older people turn their televisions up so much has nothing to do with their hearing. Maybe they, too, are blocking out the silence of an empty nest.

I want my house back. I want the ability to enjoy my own company. I grew up that way, an only child of older parents. I really don't want to lose that, but for now that's not where I'm at.

Friday, September 11, 2009

When Ugly is Beautiful

Did you see that game last night? What a nail biter! I think the unofficial motto of the Steelers should be "Winning Ugly is Still Winning". For Steeler fans, it was more or less what we have come to expect: the defense keeps the game close and makes sure the opposing offense pays for whatever they get, while our offense looks unsettled and out of sync for three quarters, then finally getting in a rhythm to bring the team and their nervous fans back from a deficit and to finally win it on the foot of Jeff Reed. Business as usual. Of course, the business of winning got a little too interesting last night with the injuries of key players on the defense (come back soon Troy) and a highly uncharacteristic fumble by Hines Ward.
Tennessee Titans v Pittsburgh Steelers
But, all's well that ends well, and for a solid five to ten minutes, I totally forgot that we were missing a member of our Nation, and that constant hole I carry around in me wasn't there. It was filled up by sheer panic and the desire to comfort Hines and wipe that sad, despairing look away. But, they pulled it out in overtime. The revenge for the last year's disrespect of a Terrible Towel, the most revered symbol of our citizenship in the Steeler Nation, was complete. The TV was turned off, Marissa and her boyfriend headed back to campus, and I took all the requisite decorations down to store until the next game. And then, in the aftermath of that beautiful ugliness, the hole came back, added now with the worry over our superlative strong safety, who left the game with a knee injury. One step forward sometimes and two steps back.

I have come to accept living with this feeling that only really goes away for fleeting moments, and then, when it returns, comes back with a little added pinch of guilt, as if concentrating on something else for a moment and forgetting to feel a gnawing loss is a sign that maybe I don't love my daughter enough. And I feel guilty because I can have those brief moments when I'm fully involved with something at work or when the Steelers are making things a little too interesting, but I don't think Greg can yet. And that worries me on two levels.

I watched him when the Texas Longhorns kicked off their season last weekend. As is traditional, the big college programs give themselves their own little pre-season with a couple of tune-up games against small colleges with no real depth to their roster. They're supposed to be blow-outs and almost always are, with rare exceptions (just ask Michigan fans). No worries. No furrowed brows. I think Greg gave it the All American Try. He invited people over and tried to make a real season kick-off out of it. But, I could tell he was distracted. I kept half an eye on him last night. He wasn't any better. Of course it wasn't his team. Maybe by Sunday when the Cowboys take the field, he can have himself a small moment's worth of diversion. But, I realized as this oh-so-long-awaited season commences that he and I have reached a point where we are at different places in our grief. He knows it too. I worry about that. For, as long as we were both wallowing down in the depths together, we were united. If one of us moves out of the muck sooner than the other, where does that leave us? I think we are at a delicate time where things could get messy. Now is the time we will have to rely on all those years of therapy that pulled us together so we could try and help our daughters. Now we will need it to try and help ourselves.

In the meantime, I will take my moments where I can get them, but hope that not too many of them come quite like that one. Winning is a beautiful thing, but, guys, there are prettier ways to do it.

Tennessee Titans v Pittsburgh Steelers

Monday, September 7, 2009

Labor Day

I think I took the term Labor Day a little too literally. I am black and blue, my back is sore, and my legs feel like lead. Man, I am old. The reason for all these aches and pains? I went with Marissa on Saturday to do community service at the Leander ASPCA. I thought they would let us walk dogs, clean out pens, and the worst thing might be scooping some poop. No. On the weekends, the community service workers do grounds work. So, it was back breaking labor. I think I already referenced it in my last post, so I won't belabor it further other than to set the stage for Sunday. Already a little worse for wear, the game plan for the day was to finish going through some of the kids' things to pull out what we were keeping and what I would try and sell at a garage sale. Marissa and I had made a stab at it not long after her sister's funeral. We sifted through most of the books I had put up in storage, and some of the stuffed animals, but at some unspoken point we both had as much as we could take and called it a day. Weeks went by and there was still a lot to sift through, including the two heavy duty totes all the way in the corner. Finally, with my new found status, I thought I was strong enough to face those totes.

The totes were two of a series of three that the same friend who told me the story of "two" had given me as a gift when the Steelers made the Championship Game back in 2001 (we would lose to the Patriots). They had gold lids and black bodies, and I decorated one with Steeler stickers and keep all the Steeler magazines and newspapers I gather in it. The other two I split: one for Marissa and one for Kelsey. At the time they were at the stage in their lives where it was time to leave their early childhood behind and move firmly into their teens. In Marissa's case, it was tweens. But, either way, they were ready for their dolls and stuffed animals to be put away and move on to more "grown up" things, like punk posters and skull and cross bone belts with big studs, and black eyeliner. I carefully packed a tote for each girl with the things I thought they would want for their own children some day with the same sort of vague sadness I imagine women all over the world pack away their children's toys. We appreciate that they are growing up, but we miss the wide-eyed innocence of their first years. We yearn for the time when they believed in things like the Easter Bunny and Santa Claus and whatever we said to them, forgetting the tired nights and how we used to wonder if and when we'd ever have a moment to ourselves. I had lovingly packed each tote, loaded them with mothballs and then shoved them into the corner of the landing, stacked their dollhouses on top of them and then never really thought about them again as all the madness of the ensuing years unfolded. That is to say until Marissa and I started to peel away all the remnants of my children's youth to try and lighten my inventory with the eventual goal of selling the house. I knew we were working our way down to those two totes, and I would have to eventually face whatever was in them. I actually had no idea what waited for me there. Too much had happened and too much time had passed. I knew they held a significance and that I had put things in them I didn't want to risk damage to, but beyond that, I had no idea what I would find.

Two little time capsules. Kelsey's was by far the most painful to open up. Aside from the obvious reason, there was more in hers. Marissa is both a sentimentalist and a pack rat (another reason I failed to see I was adopted: she takes after Mother in that regard), so she held onto things from her childhood, mixing them in with whatever was popular at the time. Kelsey was completely the opposite. Whatever phase she was in, she was all in. And, she was three years older. Her childhood was done by the time I packed those totes. And, in full rebellion mode, she was firmly rejecting any reminder of a happier time. But, I was convinced that at some point that would turn around and she would want these things. So, I tucked them away for her whether she wanted me to or not. And, I opened them up on Sunday.

Kelsey's tote, a little snapshot of a little girl long gone, held two pictures that had hung in her nursery, one Mother had sent me and one needlepoint of a dog and cat her Aunt Cathy had given me. And then there was the pink framed angel with "Kelsey" needlepointed on it that her grandmother had made for her. Marissa has one too, but it's always been with her. I had forgotten about Kelsey's. I had forgotten she ever was so innocent and sweet as to have that pink little angel hanging in her room. There was a photo album in there too. It wasn't complete. But, she had pages and pages of pictures of her eighth birthday when we had done a 101 Dalmatians theme. A friend who was artistic had helped me, and we had really spent a lot of time on it. Everything was carefully coordinated, up to and including what we all wore. The entire family was there, even her grandfather Veldman, who was notoriously detached. It was probably the crowning achievement of my parenthood. It all came together. One of her friends from the old neighborhood who attended that party wrote us a sympathy card referencing that party. So, I flipped through the album and looked at all those pictures of my healthy little girl with her shining, happy face and wondered why I couldn't have given her more moments like that?

The rest of both totes was full of American Girl dolls and hand sewn dolls and stuffed animals that Greg's mom made for the girls. I managed to choke back my tears, repack the totes since separating them by daughter no longer matters and pulling out what no longer mattered. What I learned in the process is that I can re-open the original wound.

And then there were the beanie babies. There are hundreds of them. I had literally traveled the width and breadth of the country seeking specific beanie babies for the girls one year as a Christmas gift. In the waning years of the last century both girls were absorbed by the craze. So, I squirreled them away for months and presented each of them with a huge gift bag of matching little stuffed critters. Now I have a huge stack of useless, worthless stuffed animals to dispense with, two of each kind. Mother wanted the purple ones, so as I sorted through them, I came across a pink flamingo and thought, brightly, "Oh, I can give this to Linda." before I remembered that Linda is gone now too. I began to cry. That was just too much. When will all of this be over and the pain be gone? When I see that pink flamingo walk away with someone? When I see that Felicity doll in the hands of some other little girl? Or will I always have moments that sneak up on me at random times, and it doesn't matter what I do to avoid it?

I wiped away my tears after a moment or two and spent the entire day hauling boxes of toys and books down to the garage, then sorting them all out to sell in a couple of weeks. I have sifted through as much of Kelsey's things as I am willing to let see walk off with a total stranger. Marissa has agreed to allow as much of her childhood things be sold as she can, making a strong effort of trying to think about her decisions rationally as opposed to emotionally. All of those trappings of my daughters' youth are now unceremoniously sorted in boxes in the garage waiting dispatch to some other child's house. I feel the weight of their symbolism as I sit here and write. But, in the end, I am not sure saving those trappings of a time gone by would have been wise. They are merely remnants of a life lost, not the life itself. They are not her. So, let them go and bring happiness to some other child for a time, and maybe, if they are lucky, they will make it into a keepsake box that another mother packs with a bittersweet smile, waiting for the time when she can present them to her grandchildren, and they can carry little Kelsey on in that small way. The needlepoint angel remains with me, stowed away for another time.

Sunday, September 6, 2009

Status Check

The morning after I got home from West Virginia, still wrung out from a horrible day of travel, little sleep and sick, quite literally, with grief, a dear friend came to see us and told us about another man he knows who lost a child. That man had shared something someone told him, which is that the process of moving forward from a loss like ours was done in twos. You get through the first two minutes, then the first two hours, the first two weeks, two months and then finally two years. After about two years, the story goes, you can begin to feel whole again. Greg and I clung to that story like a life raft; it gave us something to aim for. A point on the horizon where this nightmare might finally be behind us.

At the two month point, my friend asked me how I was doing. Unfortunately, at that point, the answer had to be: not that well. We were still waiting on the death certificate at that point, and so I think we lacked a sense of closure. He was a little surprised, I think he thought it was a magic formula that all people would follow. What I've learned, however, is that grief is messy and it impacts everyone individually. A million different nuances impact how you will react to a loss as opposed to how I do. So, for us to expect that our grieving would be tied up into neat little increments of twos was naive. But, the overall premise has some validity, if the timeline doesn't quite hold up. Time heals all wounds, isn't that what they say?

I noticed it on Friday morning. As I was getting ready for work, it suddenly struck me that I felt a little different. A little less raw. It's the only word I can think of to describe it. For me, the initial shock of the loss was like being shot. Not that I really know what being shot is like. But, it hit me with a force and then left me with this horrible, sharp pain that went with me wherever I went. I would get up in the morning and do what I absolutely had to do (no more), but that pain was always there. Suddenly, on Friday, that pain felt different. Again, the best way I know to describe it is like a gunshot wound. Now that wound seems to have been sutured up, and I'm suffering the dull, throbbing pain of someone recovering from surgery, as opposed to bright, white hot blinding pain of a new wound. I still feel pain, and a constant pain, but it's been blunted a bit.

You would think that would be a comfort to me. However, I found myself missing Kelsey terribly on Friday. At first I couldn't figure out what had prompted that. Nothing had happened that reminded me of her more so than happens every day. No one had said anything or done anything that triggered it. Finally, fairly late at night, it came to me. I was afraid. I was afraid of this new, less sharp pain because it might mean I was capable of forgetting her. I'm not saying that is a particular rational viewpoint, but often times fear is not rational.

With this new self-realization, I began actually paying attention to some things about myself, as opposed to walking around like a zombie half the time. I have noticed in the last couple of days that my sense of direction, already weak at best, is completely gone. I keep almost driving by exits or turns to places I've been going to for years. Some of that is that I tend to get lost in the weight of my own thoughts, but some of it, I realized, is that everything just looks different to me. I have no idea why that is, but it is. My perception of things, both new and very familiar to me is not the same and almost always to the detriment of the place. I like the bookstore less. I like sitting on my back porch less. I liked the moonlight less during the last full moon. I still like storms, though. Those are still awe inspiring.

I had already noticed that my immune system took a hit. I find that I succumb to whatever is going around more easily now and shake it off with a lot more effort. I've had a sinus thing going on for a while now and, even with antibiotics, it's sticking around. I had that violent stomach virus before that. I tire easily, but don't sleep well. I did some volunteer work with Marissa yesterday that was pretty physical. We worked outdoors at a local animal shelter pulling weeds in their beds. In the past, something like that would wear me out, but would not have been an agony at the time. I could barely handle it. Granted, I'm not getting younger. But, I was surprised at myself. I did labor like that for hours in my own yard until the heat drove me away from it just this past May. I would venture to say Greg is the same way. He's had to take a few sick days since returning to work. I would have hoped that, with the advent of this new, less intense level of grief, I would recover a little more and regain some stamina. Unfortunately, after yesterday, I have to say that remains to be seen.

When I look at myself in the mirror I see someone who is pale and old. I look as tired as I feel. Never a beauty and never particularly interested in some of the beauty tricks most of my contemporaries use (Botox being a favorite), I looked my age before June 20. Now I look older. I wonder in passing if all of this has taken years off my life. I look at my mother, with her disheveled hair, wearing a bib to eat, getting mad at her neighbor because she wandered off with her purple beanie baby bear (try saying that three times fast) and find myself not particularly saddened at that thought. I would, however, like to look alive in the meantime. Maybe I'll have to cave and get something injected somewhere. I'm still thinking that one over.

In short, life has changed for me. I know that it will never be the same. Whether I can find some joy or even a level of contentment somewhere down the road remains to be seen. I do know now that I will eventually feel differently than I do now. I wonder if I'll ever feel completely whole. I wonder if, like an old war wound, eventually it will only hurt when the weather changes, or if I will always feel some level of ache. I think it's a good sign that I'm curious.

Wednesday, September 2, 2009

Health Care

Yes, I drank the Obama Koolaid. There are a lot of reasons for that, but it would be a waste of type space to go into them because I have the unique honor of having friends who have strong political feelings on both sides of the aisle, and if you're reading this, chances are you're among them, and what I say won't persuade you either way. But, yes, I admit that I would probably support health care reform regardless of my personal situation as a result of simply believing in the Obama camp's visions. However, I do have a personal situation which deeply impacted how I felt about the topic. So, let me tell you about it and see if I can inch you a step closer to that ice chest holding the Health Care Reform flavored Koolaid. It's really refreshing, I can promise you that.

When Kelsey was five, I drug her out of school to listen to Hillary Clinton speak about health care reform. Little Kelsey was bored to tears of course, and I knew she wouldn't follow what was being said, but I wanted her to be able to say she'd seen the First Lady. I always had a feeling the female Clinton would be a political force for a long time, and it would some day be a neat experience to think back on. Now, 18 years later, the debate continues on. It has taken Kelsey's entire lifetime time to get where we are, and we're still not there. But, back then when I listened to Mrs. Clinton speak, I did so with a polite detachment. I really had no personal stake in the matter. We were enrolled in an HMO through Greg's work, my two children were healthy, Greg and I were healthy. No worries.

Well, life has a funny way of changing. Over several of the last nine years, my entire income funneled back out to pay for the care teams we had assembled for our daughters and/or their residential treatment, and we basically lived on Greg's income. The ultimate Catch-22 was that I needed to be home to care for my daughters, but I needed to work to afford to do it. When I was a partner in the business, that was possible when it just became too much to juggle. My majority partner found a way to utilize me so I could work from home, and I "retired" for the first time when we still owned the company. It was charity, pretty pure and simple, and I think everyone knew it. But, then we sold the company and charity is not something modern corporations can engage in, and I came back to work in the office for a time. In a story yet to be told, that was not a good move, and I had to leave once more. I have been in and out of that place so often that I joke I am the proverbial bad penny. Part of the conundrum is that eating disorders are very complex to treat, which equates to expensive and insurance companies do not like that. Most individual doctors, therapists and nutritionists who work in the eating disorder community do not take insurance. If you want to file a claim, you have to do it yourself. The reason for this is simple: they want to fight the disease, not the insurance company, and getting any of the treatment covered is a fight. We were lucky to have found a prominent specialist in Austin who treated Kelsey for a long time. When I first contacted him and set up the initial appointment, his office sent me an extensive packet that included a detailed instruction sheet on what to expect from one's insurance company and tips on how to fight it. The message was clear: your insurance company is not going to want to pay for it, you are going to have to fight for every dime. But, at first we were fairly lucky. Compared to a lot of families, that is to say. We had United Health Care at the time, and I have to say they were pretty decent overall to work with. We had some hassles; I formally protested some decisions, which never ended up doing me any good, they turned down some claims because of ridiculous red tape issues over diagnostic codes and they were slower than molasses to pay out claims, but from what I can gather, they paid out a significant amount for Kelsey's treatment. I was bemused by their willingness, almost eagerness, to pay for Marissa's various drug treatments, but how they were much more cautious when it came to Kelsey, but overall I was pretty grateful for what we had. I kept hearing how I should be really glad I didn't have Blue Cross Blue Shield because that company refused to pay for treatment for eating disorders.

But, of course, our luck did not hold. United kept raising premiums, and the company went shopping for a better deal. I remember a meeting we attended with representatives of a new company that was looking to cover us. Greg and I were both there, as was another manager who has cystic fibrosis. I can't remember what the company was or exactly what their schtick was other than it was some sort of new fangled cafeteria plan that held the belief that patients should understand the true cost of health care so they don't abuse it. I remember that they didn't cover emergency room visits up front like most of the others do for that reason. Of course, I immediately was turned off by that premise. After all, I knew better than most people in the room what true medical costs were, I had been up fronting them for a few years by then. I more or less assumed most of us don't purposefully abuse our coverage because we don't see the whole ice berg. I know it happens, but I found the assumption that the average worker does it to be insulting. Anyway, my friend with CF and I began asking a lot of pointed questions. We were heavy users of insurance, it was the predominant employee benefit for us, and we weren't particularly stupid. What I do remember is how uncomfortable the two presenters began to look as the presentation wore on. I don't think they really thought they would be insuring people who were actually sick. I can't speak for my friend, but the feeling was mutual. We were all given a questionnaire to complete, and I went back home to my two ailing, troubled kids, definitely worried about what was going to happen. What happened was that we got an announcement a few days later that the company had declined to do business with us. I called the HR Director, terrified that it was because of my friend and I, and wondering, if that was true, how long either of us could expect to work there. She assured me there was no indication that was the case, but I've never been convinced of that.

I dodged a bullet for a time, but there was more than one round in the chamber. The next move was to engage with none other than Blue Cross, Blue Shield. Wow. I'd been told at least four separate times by four completely different people to be grateful we didn't have it, and now we do. In fairness, by that point, Kelsey had been to residential treatment three times and we were pretty cash poor. By then, it was Marissa who was the cause of most of the claims. But, I have never gotten a handle on those people. It's like a crap shoot what they will pay for and what they won't, but it's a better bet that they simply won't pay, and how one goes about filing a protest or a self claim is less clear than it was with United. I asked Greg recently if he could cancel his coverage and ask for the premiums the company pays toward his insurance be in turn paid to him. He said they wouldn't do that. So, in essence, if I had enough of this crap and wanted to go with another insurance company, I would basically give away about $4,000 a year in compensation. And when Kelsey was alive, I would have had to disclose her condition. No company would have accepted us probably. Or at least not at a rate we could afford. Our choices are to do what at least two families I know of do, which is to do without. In both cases, the husbands are self-employed. They live on prayer and good luck, but I can tell you luck is a fickle mistress. So, if we decide not to trust in luck, I could try and find a job with another company so we could get a different package. Long term, that probably is what I'll do. But, that sucks - for lack of a better term. What if I like my job and don't want to leave it? Should I have to just because I need different insurance? Let me just help you with that answer: no, I should not.

The part of all this I haven't discussed is how time intensive all this fighting with companies and trying to keep track of all these expenses is. And, trust me, if you're in a situation where you need to take on big insurance, that probably means your time would be better spent taking care of a loved one. It's a total racket. Whether it always has been, I can't say. But, it has been since for the last nine years anyway.

I want competition in insurance. I want to be able to pick my carrier. I want that public option. I believe sincerely that, no matter what bill ends up passing, eating disorders will not be addressed because it's an extremely complicated disease to treat, and it will not be a panacea for those individuals still struggling with that particular issue, but I still saw how completely wrong the current situation is for everyone else. It needs to be corrected. Even if those of us who are committed to better coverage for eating disorders have to fight on.

The final insult came a few days ago when Blue Cross rejected the claim for the Emergency Services team who responded to the final 911 call when Kelsey died. Why? I have no idea. They didn't send me anything. I got the decision from the Travis County EMS. I drove past a billboard for Blue Cross today that read "The Color of Support". I would find that funny if I weren't so sad.

Tuesday, September 1, 2009

Legend of the Fall

September. At last. I can begin to put this horrible summer behind me. Even without the one big event that overshadowed everything else, I would be glad to close the books on this one. The record breaking heat coupled with the long, cruel drought is enough to exhaust the most hearty of Texans, and I've never claimed to belong in that crowd. Growing up in Montana, early fall was always a favorite time of the year. The air turns crisp with just a bit of a bite in the morning, the leaves turn golden and you begin to pull out the light sweaters to wear when you go walking. Imagine a Saturday afternoon sitting on metal bleachers watching the Bobcats play in such pristine conditions, and you can begin to see why the Fondas moved there, bringing all their rich, land grabbing friends in their wake and ultimately ruined it for the rest of us. Here, in central Texas, fall is a tease. The light begins to wane a bit, and us Yanks glance outside and think, "Oh, it must be cooler," only to be greeted by the hot kiss of the Texas air long into October. Steeler fans, which are not uncommon around here, are particularly impacted since we are traditionally jersey wearers. Football jersey material is unforgiving; it is heavy and does not breathe. And, ours are black. But, we endure. We are tougher than the elements. Because there is one thing even a Texas fall cannot keep us from: football season. And, I will confess, central Texas is not a bad place to be positioned as a football fan: easy driving distance to two pro franchises, with one major college program in one's own backyard. (Of course, we could get that in Pennsylvania too, as I haven't been shy about pointing out to my husband.)

But for most of our lives over the last two decades, fall also meant back to school. And for my girls, that was not a reason to celebrate. So it is that I as I drive to work these days and watch the neighborhood kids waiting for their bus, I cannot help but wonder how they will fare in the hands of a large, impersonal school district. Some will be fine, others will struggle, maybe one of the little group will actually flourish, but I wonder if there are any among them who will drown in the deep waters of a big system, unnoticed. This is not, I should say immediately, to in any intimate that we do not live in a good school district. We do. Or at least, we did. I cannot honestly say how it ranks these days. But, when we chose this area, it had a good reputation, albeit a conservative one. And, I am not anti-public school in general. But, what I have concluded is that large school systems cannot, and likely never will be, able to handle a student who does not fit the mold. As Kelsey fought her way through high school, they at least tried to work with us, although it was over Kelsey that I had my most frustrating moment. I got irritated to the point of screaming one day not long before we sent her to the initial residential treatment center when the first call I got from the school was the counselor telling me she had collapsed on the stairs, was too weak to be there and was a liability to the district and telling me, not asking me, to come and get her. Later in the day, the grade level secretary called, a haughty, miffed tone to her voice, asking me where she was and asking if I was aware how many absences she had. Keep in mind, I signed her out like a good little parent of a malcontent. I can't recall exactly what I said, but I'm pretty sure it included something along the lines of, "Don't you people ever talk to one another?" I was very careful never to swear or lose my temper at any of them because I knew my kids would be the ones who faced the consequences, but I did exchange some looks that would kill with some of those secretaries over the years.

By the time Marissa came along, either because the Veldman name held a taint or because of funding cuts or staff changes, they really could have cared less, or so it seemed. Helping my child was not on their to-do list, they just didn't want to lose the funding. To hell with the well-being of the student, that funding benefit each head count brings was to be protected. At that point, we said goodbye to public education whether they liked it or not, and Marissa got yet another advantage as the younger child that her sister never had. But, it's a hard decision to make. I still pay taxes to the district, whether my child goes to school there or not. Truthfully, I don't have a big problem with that. I look it as educating the people who will be taking care of me when I call Marissa by her dog's name in some future time. But, it's not a small ticket item on our budget. Neither is private school for that matter. We tried the home school route for a while. What a disaster. Neither Marissa nor I had the self-discipline for that, although we had some fun going to Barnes and Noble to "study" and in fact buying Dandy Warhol CD's and drinking Starbucks. That left finding a private high school and then figuring out how to pay for it. Mother stepped in and helped, and that worked for her from a tax standpoint, so it was a mutual benefit to a degree, but if someone doesn't have a well financed mother to look to, watch out: it's not tax deductible for the parent. And, we were lucky enough to find a tiny local school that was totally perfect for our little hippy chick, but that's probably not always the case in all areas (actually, in Austin there is a private alternative for just about any philosophy for the right price).

What is the answer, you ask? I wish I knew. I don't look to Barack Obama to fix this one for us, it is way too complicated and regionalized. Even within our school district, some of the high schools are "better" than others. And, what we need in my suburban corner of Texas versus what someone needs in the inner city of Pittsburgh are two different things, as are the tax bases for the two areas. The best counsel I can give is to remain involved with the school and in tune with your child. Involve them in extra curricular activities and get to know the other parents. Know the teachers; that's a big one. Know the principal (in our case, there were multiple principals to know and try to cozy up to, which is not always easy since they have big jobs, and a wrench in their system like Kelsey or Marissa is not something they have a lot of tolerance for.) Maybe a bigger one: vote. I generally supported the bond elections, but I could not have told you very much about the school board that made decisions impacting the two most important people in my life. I would not make that same mistake again. But, finally: know your rights. What is out there that can work for you and your child? Alternate programs like "Success" in Round Rock, "Garza" in Austin, or maybe a charter school? Are there programs designed to give an assist to an ailing student, and how do you enroll? Are there counselors available? Remember, you pay them. They work for you. Treat them with respect, they work hard and they get paid very little, but as long as they cash that check, they're on the hook for you and your child. Don't, I repeat don't, let them off it.