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ALMOST THEREBeauty and Self-Destruction
By William J. Milnazik
AuthorHouseCopyright © 2012 William J. Milnazik
All right reserved.
Chapter OneTHE LAST THURSDAY
It's late Thursday, the day that I first heard that they would have to amputate your legs. I was at work earlier in the day when mom called to let me know what the doctors said. She has always been the strongest emotionally in the family; it's the kind of strength that she never asked for, the kind of strength that comes from a life of care-giving for mothers and uncles and aunts, among others. It's been, at times, a conscious choice and, at other times, a well worn habit. But, that particular moment required more ability than she thought she would ever have to possess. We cried through the call, knowing you probably wouldn't let the doctors take your limbs, and that after this many years of struggle, death would likely be preferable. What is equally sad, or maybe just an odd observation of my own thoughts, is that I almost understand your choice, or at least the choice that I suspect you'll make. After twenty-five years of this slow, unconscious suicide, there is a convoluted logic to letting go ... one last time. You have, after all, been letting go of life piece by piece, unconsciously, for years—or maybe it has been with more thought than we know—deliberately shutting down life in carefully measured and calculated portions.
Kim, you are my sister. We were born of the same parents. We spent our youth together as most siblings do. We took family vacations together, exploring the crystal waters of the Caribbean or learning to water ski in the mountains of Pennsylvania. We ran downstairs together to discover what Santa Claus had left for us under the Christmas tree. We navigated the trials of adolescence and college—differently, but together. I have always admired your talent and your kindness, but for half of my life, you haven't been there. In your place was an almost nonexistent body and a mind, a brilliant mind, but one that was getting buried deeper and deeper in its own desire for perfection. It can be so easy to abandon everything in search of a successful career. I have watched myself at times fall into that same trap, but to a lesser degree. Like any machine, like any functioning device, a career needs to produce something in order to justify its existence, otherwise it becomes little more than a hobby or pastime. You demanded such perfection of yourself that no finished product could ever come off the end of your production line. As time passed with this illness, less and less was "good enough". Perfection had become your enemy, your addiction, your assassin. Yet, with a tight grasp, you held it close and protected it from the few remaining people that have been trying to help you through this for half (the last half) of your life.
Our family has come to understand the word "anorexia" better than most, or at least the complex version of it that you have held onto so tightly. We've experienced it in ways that can splinter a family and empty one's heart of hope. The effects of an illness like this go so far beyond any single person. Kim, you are foolish to think that you can be an island, separating yourself from the world around you. Your actions do have effects on others. We aren't experts, as if there are actual experts on something this complex, and we don't have a great deal of clinical knowledge about this disease. I, too, have watched the TV specials and listened to the news stories. Each time I recognized a familiarity but tried to hold on to or maybe cling to the thought that our situation "isn't that bad." Maybe things could change if we could only work with the problem ... if you would only work with the problem ... if you would only
Self-destructive behavior in a family member brings with it fear, hope, denial, work, pain, and ultimately what I now see for us: failure. As I write this, sitting on my sofa, you, my sister, are in the intensive care unit of Paoli Hospital. Your body is malnourished to the point that the circulation in your legs has almost completely shut down. A body does that in order to protect the organs ... in order to protect ... life. It's the biological equivalent of military troops retreating behind a smaller and smaller area for protection. Your white blood cell count and glucose levels are way off and you are not responding to normal treatment. Gangrene is beginning to set in on your blue, purple, and black legs. I am waiting for the phone call that will tell me to come to the hospital and say goodbye. All of this because of your own choices. A child should never die before her parents ... especially at her own hands.
I feel guilt about the thought of accepting your death. My mind struggles to prepare my heart for the inevitable, but is this abandoning hope? The doctors say that there is a slight chance that the nourishment they are flowing into your veins might be enough to save your life ... and maybe, if we are extremely lucky, even your legs. But they also say that you are too weak to undergo any surgery right now, and even if they do amputate, you may not have the strength to survive. Is this medical nourishment a morbid version of fattening the calf for slaughter? Getting you to the point where you are strong enough to have your legs amputated?
My mind searches everywhere for logic or reason.
This point in time is the result of a combination—your combination—of compulsive behavior and anorexia. It comes at the end of countless conversations and decades of emotions ranging from hope, optimism and sympathy to anger, guilt, and sadness. It comes at the end of so many doctors making so many diagnoses. It comes at the end of so many years of your brilliant and conscious (or possibly subconscious) manipulation of us to keep us at a distance. We are now, without the help of a miracle, losing half of the children in our already small family. For many years, I have felt alone without a sister, but I'm now beginning to feel the intensity of a mixture of emotion that wraps together fear, hurt, anger, and some other emotions that are completely unfamiliar to me. And I have no choice but to feel them all.
ANOTHER STEP ... BACKWARDS
Three weeks ago—in my day-to-day obsessions about business, sales, schedules, and the daily questions of, "Am I doing my best work?"—I picked up the phone. On the other end I heard Mom's voice say, "Your sister has fallen and broken her hip." At the age of fifty, a broken hip sounded a little odd ... unless we were to consider your physical condition. After getting you to the hospital, mom, dad and I talked, knowing what a broken hip could mean to an elderly person and considering your diminished health. It was later that day, when I was visiting you in the hospital, that I learned that you had literally fallen asleep standing up while working on plans for a stained glass window. No doubt a result of no more than three hours sleep for many consecutive nights and the bare minimum of food intake for months. The previous twenty-five years had not been much different, but you had been pushing yourself even harder in recent weeks. The doctor said that you had the brittle bones of an eighty-year- old woman and your hip had just snapped when your exhausted body hit the cement basement floor.
In a medically mechanical process, they opened your hip and attached a plate and screws so that the bone could heal—a relatively common surgery. I sometimes wonder what the conversations, or at least the thoughts, were around the operating table—seeing the emaciated body of an anorexic woman, with the expectation that they were supposed to "fix" it. It was clear to us, and I have no doubt that it was clear to the doctors and nurses as well, that fixing a hip would not fix a broken life. It was like patching a hole in a tire when all the remaining rubber was all but rotted out. Surgical actions in a case like this seem to be more about giving hope than giving health, and for so many years, you had been slowly but continually stripping us of that hope, while you were draining the life from your own body. After all the talk, all the family discussions, and the years of occasional therapy, we thought that maybe, just maybe, this event could have been the reality check that would have finally enabled you to see what you were doing to yourself. It's amazing how one always reaches for a glimmer of optimism no matter how often or severe the disappointment. Human nature is wonderfully and at times foolishly resilient that way.
I returned to my frustration and sadness when I visited you in the hospital and listened to you casually talk as though this had been just an accident, a minor inconvenience. There wasn't a glimmer of understanding or acknowledgement of the severity of the event. You had once again perfected the skill of denial. It was a few days later when clarity began to creep into your mind. Maybe it was the fear of death or the understanding that this was not the way to live a life. We heard you hint, for the first time ever, about your mistakes and that you wanted to learn how to be healthy. This may not sound like much to most people, but after twenty-five years of firm and almost complete disregard of our help with a very polite, "Thank you, but you're wrong, and besides, I don't have time to talk to a therapist, or to see a doctor," any admission of a problem was miraculous. We even heard through alternate channels that you had been talking to a social worker about going to an eating disorder center, something we had discussed with you numerous times. Maybe, just maybe, we were turning a corner here, being heard, making a difference.
In addition to your surprising shift in thinking, we were also working, outside of your awareness, to make a change. When we knew of only a broken hip, we decided that, with your history, a history that we knew all too well, this was far too serious to leave the decision-making up to you alone. But you were an adult, so we also knew that we had a very thin legal foundation to stand on. We (Mom, Dad and I) were getting together with a therapist that Mom had already been seeing in order to work around some of the absolute insanity of HIPPA regulations and to do what was needed to try to save your life. It was this therapist, in discussions with another therapist whom we had all but forced you to see, that first discussed the existence of an obsessive-compulsive component to your already difficult situation. Whether it was a moment of confusion or possibly a moment of clarity, it didn't matter. You gave us the "okay" to talk with your therapist. I wonder now if your decision was from a newly found understanding of your own mortality or simply from the exhaustion of surgery and rehabilitation. Finally, for the first time ever, after twenty-five years of attempting to help you out of this self-destruction, we had the opportunity to bring all parties together and discuss openly how we could help. We discussed an intervention of sorts that would leave you no choice but to enter an eating disorder clinic. But we also knew that, as an adult, you had the right to check yourself out at any time, or even to refuse to go at all. We made the best plans we could, uplifted by the interest that you showed in accepting help and by your sudden acknowledgement of a struggle that we had been watching for so many years. It was a realization that came from a discussion you had with a social worker. After all of our attempts to show you what you were doing to yourself, it was someone outside of our family that had finally gotten you to see the truth. I am so grateful to her for making that effort and for sharing what she heard with us. This raised our hopes enough to actually risk thinking about a real solution for the first time in so many years. It had always been simple; we would see the truth and the self-destruction and we would ask and plead and discuss all the realities of malnutrition, habitual behavior, and self-sabotaging actions. Yet unless you were to agree to lower your self-protection and think, even for a moment, that you might be making some very serious and life-threatening decisions, we could do nothing. This disorder has a complex ability to ensure its own survival. Because of malnutrition, a pattern of distorted thinking is seen as truth and reality. That "perceived" truth encourages more malnutrition, creating more distorted thinking, causing a life-threatening (or ending) spiral.
How did we know that you had agreed to go to an eating disorder clinic? It wasn't from your words. For the moment, we had a spy.
The HIPPA regulations have a way of preventing everyone from hearing about one's personal health. In this case, even family members were prevented from hearing anything from anyone ... other than you. HIPPA is a very convenient wall that the mentally ill can hide behind. It's a constructed barrier that separates those that need help from the very people, and at times the only people that care enough, know the person well enough and are in a position to help. To be fair, there are many cases in which privacy is an important aspect, especially in this age when corporations love little more than profiting from the details of one's personal information. But it also prevented us from knowing the truth, or at least having the factual, professional diagnosis that could have shown us the severity of the situation before it was too late.
A social worker was "leaking" information about you to Mom. I don't know her name and have never met her, but I will be eternally grateful that there was one person amongst years of therapists and doctors that understood the importance of honest and open communication and the damage that can occur from the rigid misuse of regulations. With an illness like this, or any other involving self-destructive behavior, knowing the truth is critical. The social worker was a connection to your real thoughts and real situation. We were able to plan and work on the "outside" and adjust to what was really going on, not to what you were so carefully allowing us to think. In this case, now, finally, we were given the knowledge that you understood the truth ... after twenty-five years ... and that knowledge was invaluable. It gave us, even if only for a short time, the ability to work with you on this, not as adversaries. And maybe most importantly for us, it gave us the hope that there just might be a happy and healthy future for you.
A TURN FOR ...
It couldn't have been written much better. Endless Hollywood movies use this same blueprint in order to create drama and shift the emotions of moviegoers. Wave an element of hope in front of them just before crushing them with the sorrow of inevitability.
Months before your fall, you had developed an infection on your ankle that would not heal. It grew deeper and more severe, almost reaching the bone. This was another result of your illness. The human body can only do so much with a lack of sleep and nourishment over that long a period of time. You had talked of the pain from the infection so I knew it was severe because you rarely complained about anything. I had the arrogance to take it lightly, in the privacy of my own mind almost blaming you for causing it. In the hospital, the doctors became more concerned with the infection than the postoperative care for your broken hip. A choice had to be made. In your compromised state, the antibiotics, the powerful ones needed for this infection, would also kill much of the protective bacteria that your body required, running the risk of lowering your already compromised self-defense system. Yet the infection was getting more serious and needed attention. You and Mom weighed out the pros and cons of different approaches and decided to proceed with the antibiotic. It did its job. It killed everything ... everything except for the one bacterium in your intestine that your body was already barely keeping in balance. That bacterium now had a chance to grow without the check and balance of your body's normal healthy defense. When an average person is afflicted with vomiting and diarrhea from this type of illness, the pain and discomfort are considerable, and it can be very serious, but it isn't normally something that guarantees death. For you, the physiology was very different. You had taken your body and health right to the edge over so many years of slow and unconsciously methodical starvation. Your body was at the point where any stress would push you past your ability to fight. You simply had no more reserves to draw upon. There was nothing left. The skeleton of a human form that I so often looked at with heartache had lost the ability to do what is so fundamentally human ... survive. When I step back and look at the years of struggle that led to your death, I sometimes wonder if you hadn't died years before and your body was just now catching up.
Excerpted from ALMOST THERE by William J. Milnazik Copyright © 2012 by William J. Milnazik. Excerpted by permission of AuthorHouse. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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