I'll Never Be Who I Was

Some revelations are so profound that I often have to push them out of my mind. Recently, a family member who pays little attention to me asked me the question everyone asks when they find out I am a musician. "Can you still play?" Sad smiles don't even begin to cover the immense shame and pain that I feel when people ask me this.

I was talking to a gentleman at occupational therapy yesterday who asked me some very pointed questions strangers shouldn't ask someone. But, we're all at hand therapy and a few of us can be kindred spirits. Sure, why not? I answered his questions becuase he clearly had no idea who I was and what I deal with.

I didn't catch his name but we can call him Tom. Tom is an arborist who has severe pesticide and chemical damage to his hands and feet. Tom says "You injured yourself pretty bad there, did you?"

"Um, no it's a bone disease." I do that to cut of curiosity seekers - you all know that the majority of people don't care or show a passing interest.

"It's a what?"

"It's called Kienbock's disease."

"WHAT?" Clearly Tom is not a disinterested person. He thought I was just there after doing something stupid like dropping a concrete block on my hand or something. I mean, I can sympathize because in his line of work you have to be a big risk taker if you deal with pesticides and chemicals constnatly so maybe he thought that he had  a bird of his feathers or something.

So, I sat there and explained to Tom. His face looked crestfallen while I explained what my disease is in short, and how that affects me. He asked me some poignant questions and what I did for work. When I told him I teach music in the evenings he looked like he was going to cry or hold my hand - but his hand and my hand were both in electrode wraps.

I don't normally connect with people. I have a very dangerous past that disallows me the comfort of connecting with people as I am very damaged emotionally. For some reason, this man didn't bother me. Typically it bothers me to talk about myself to just about anyone. I was never able to talk to my mother when she was alive, and forget talking to my dad or my sister and brother. My best friend and I have an understood silenece about ourselves in which we don't need to talk about things - our presnece is just comfort. But, this man was different. I think it was a good thing for me. For once, it was a good thing to connect iwth a person.

It really hurts me that people don't really want to know about you when they ask. It hurts me just as bad when people who you do want to know you, don't want to know you. this was fdifferent somehow.

I'll never be who I was. I'll never play the piano the way I used to when I was 18 and in my prime and a student of one of the best pianists I've ever had the plasure of working with. I'll never play those Chopin Nocturnes my husband loves, and I 'll never perform again publicly or play for church. From our short 10 minute onversation, this man knew that and felt my struggles and pain. He asked me what I'm going to do. I said "What can I do? This is my life. I have to live with it and deal with it." I'll never be that person again. I was never meant to be that person.

Stubborn Me

For years I've lived with constant pain my hand and arm. I actually have had it so long, that not feeling the pain would not be normal. It'd be downright weird. But the thing is that even though I've lived this way so long, I refuse to mentally acknowledge my condition. Like, that gear in my brain that automatically thinks like a girl with Kienbock's, doesn't always fall into place.

After my second surgery, we were at a friend's house. Her husband was on a hardship tour in Guantanamo, and she had a newborn baby at home. We were being good people and good friends by visiting her regularly, going out with her, and helping her with the baby. So, we had literally gone there two days after my surgery - I was still on percocet at the time, and very strong anti-nausea medications (this is before I had the worst 2 weeks of my life). I was so dumb about my arm, I picked up the baby. At the time, he was probably a good 12-15 pounds. I later found out that doing that ruptured a bunch of blood vessels and I had the most ugly bruises on the planet for several months.You just don't think about it. It's so second nature to reach for something and pick it up. But, I have a tendency to miss or drop. So I was the dummy that picked up the baby.

Today I still have a tendency to walk into a store, and pick up a bunch of things, go wait in line at the register with my armload, and then carry heavy bags around. I think that I can make, just this once. I think every other time that I'll get a cart - but I don't want to be the girl who is pushing a huge cart around Safeway with just a gallon of milk and a few veggies. I am just that stubborn.

Learning to give up control in situations where you believe you can do something is harder than you think it is. Thinking about myself as a person with a disability when I am able in many other ways is just a flat out chore. I can admit I can't do things, but I still want to do them. And so I insist on doing so. In reality, I shouldn't do about half of what I do do. Stubborn is just part of my personality. When I really believe something, I won't give it up. I refuse to budge on my ethics, and therefore it's all too easy to refuse to budge on what I believe I can do.

I'm learning to ask for more help. I'm learning to get over my fear of judgment and rejection. I have been making important strides in letting go of being stubborn, but it's always a challenge I have to deal with daily.

Things Must Change

DISCLAIMER: This is not meant to hurt anyone's feelings. It is not an attack. THIS IS HOW I FEEL. THESE ARE MY OPINIONS AND EXPERIENCES. You can't change that.


Since many people responded to my previous post in a way I half expected (dared to hope wouldn't), I would like to remind everyone who reads this that this is a blog about MY life, MY experiences, MY views, MY opinions. None of which is something that you can affect with words. So, I'd like to explain something about having depression and a borderline personality ... mothering them will not work. Telling them things aren't so, will not work. Giving them an "open door" will readily be ignored. And again, I am not saying this to hurt people's feelings. I'm stating the truth. It forces me to withdraw further.

I've spent my entire life reaching out, and floundering. This is something I struggle with daily. I've tried initiating friendship, I've tried carrying on friendship, I've tried being a good family member ....in all of these situations, I get walked upon. People lie, people flake, people don't want to be around me, people don't want to do the things I want to do - but when the tables are flipped, they expect me to respond. I'll give an example.

I was acquaintances with someone in college. I really wanted to be her friend; she was a really interesting person and someone I felt I could connect with over a weird interest in serial killers. (Since that is aside from my point, I'll leave you wondering.) One summer, she stayed at school. I called her and asked if she could come help me put together some furniture as my husband and I had just moved and he was working full-time and attending classes. She came over and helped me put together the dining table, the chairs, and a small coffee table. We got to talking about things, and she wanted to be a bone specialist. I explained I had a really interesting book on bones. It told this hilarious story about how Michael Jackson thought he could buy the Elephant man's skeleton - which is just wrong on so many levels. I ended up loaning her that book, and another one. On another occasion, we went together to Moscow to have her hair cut since she didn't want to go alone. I thought we were building a good rapport. That year in college, she wanted my support with a major decision she was making. I threw myself behind her because I really believed she could make change happen. Not long after this, she didn't get the position she wanted and I feel she blamed me and my husband for not being her champions. Shortly after this incident, she invited us to a costume party. My husband and I had spent most of the afternoon fighting, so neither of us was in a good mood and we couldn't put costumes together in time. We called and told her we wouldn't be able to make it, that neither of us was feeling very good and that we were fighting, maybe it was best we didn't make her party awkward. This was quite truthful. I think if we had gone, we would have been fighting a lot longer than we could have been. She stopped talking to us much after that unless it was out of convenience. We never received invitations again, when we'd ask her to do something she was always too busy to spend time with us, but not other people, she never returned the books I loaned her, and then a few months later, she moved to the other side of the country to attend graduate school. We've never heard from her again.

This is a pattern in my life. Like it or not, I can give someone every reason to believe me, to trust me, to be kind to me, I can reach out, and then suddenly it's gone. Often without explanation. This remands me to keep to myself. I stop asking anything, and thus I never get anything. I become infuriated when people think they know how to fix me too. I don't want to be fixed. I don't want to understand YOUR view. I don't live in YOUR world because my problems are mine. They stem from me and MY environment. Not yours.

I don't want people's pity. I don't want people's feeble attempts to open doors. (And I say feeble because in MY experiences they have all been feeble, never honest.) I hate to say it, but what I want is someone to just know and then act. Yes, I'm a woman and yes that means in some cases you are expected to be a mind reader. I'm sure everyone can relate to that, but what I am saying here is that I often don't have any idea what the hell it is I need. I don't get it from my family, and I don't get it from the people I know. Often, the only person in the world that can give me anything is my husband. And, he's got enough on his plate - I hate pressuring him to do more. He's been so wonderful that I can't just dump on him anytime I feel like. In fact, he is NOT a punching bag or a trash can. This is something I expect other people to automatically accept without explanation. He can't always be the one.

Finally, my speaking out about my views and my experiences isn't here for you to judge or change my mind about. Things have to change. I'm not some five year old that you can get to believe in Santa, I'm a 30 year old woman with a husband, a degree, a career, 2 home businesses and medical problems. Consolation does not come in the form of "wishing" things for me, or telling me "that's not the way it is." It makes the issue(s) worse. So what is my motivation for doing this?

My getting rid of the poison in my heart, I can be free. THAT, is worth the pain and heartache in the end because at the end of the day, I know who I am and that is all that I want to matter.

Hi. I'm Kienbock's Girl and I Suffer From Depression.

I remember being lonely from a very young age. I have a younger sister and a younger brother, hoards of cousins, a best friend I've known my entire life, yet I remember feeling lonely most of my life. I can't pinpoint exactly what it stems from, but I know there are many factors that contribute to my bouts of depression.

When I was 16 I contracted mono from sharing drinks with friends at school. Two friends who were dating each other had been sick for a couple of weeks, but didn't know that they had mono. I distinctly recall buying a Sprite one day for lunch, and they passed it between each other. We did this often in my circle of friends. If someone had a drink, you just shared. And, there were like 15 of us or so that this would happen with. That day, I shared it with the two of them, and then went to German class. A week later, my dad had to take me to the doctor because I couldn't stay awake, I wasn't eating much, and I felt like every day I had run a marathon. The clinic gave me that form they always give to patients to fill out asking what their symptoms are; what aches, what hurts, what stings, stabs, pokes, bleeds, etc. I checked a bunch of stuff on the list including headaches, itchy eyes, lethargy, trouble sleeping, trouble falling asleep, trouble waking up, exhaustion, wheezing, achy joints, and more.

When I went in with the doctor, they first gave me a blood test to see if I had diabetes. Then, she asked me why I checked everything off on the form. I told her (in what I am sure was my best 16 year old attitude) the form asked me to list everything I was feeling, so I did. They swabbed my mouth, took my temperature and then took 6 vials of blood from me. After this invasion, she sat down to "chat" with me. She basically told me that I was likely suffering from early forms of insomnia and depression - which are often linked. She told me she was going to prescribe medication to "regulate" my hormone levels.

Not long after this, we found out I was sick with mono. But, my dad starting taking me to a psychologist at the doctor's urging - over something completely unrelated which at some point I may be able to talk about more openly. After some time with the psychologist, she too believed I suffered from episodes of manic depression, but did not believe I was manic - that I just had a mild form that would peak at times. In addition to this, she also agreed that I was suffering from insomnia. I would literally stay up all hours of the night trying to keep my mind off of my life, my family, my problems, and my loneliness.

I was kept on drugs for depression for a few months. I only told 1 person other than my family that I was being medicated. Mostly, because when I was on the medication, I was not the same person. He thought I was acting extremely strangely. I would talk to complete strangers, I made dates with complete strangers, I would drive my car with one leg out the window (no, I'm not kidding), in social situations, I would be relaxed and indifferent, I would say things I normally would never have the gall to say, the list goes on. Ultimately, I hated the person I had become on drugs and so I quit taking them after a while.

In my view of my life, I have been a very inward person. I don't share the deepest parts of me with anyone. Or, if I do, it is a bit here and there and usually they're with my husband. I was brought up by a father who had no nonsense parents, and by a mother who was somewhat crazy but was someone you didn't dare cross. I did not fit either of these molds. I feel like my entire life, I've been nothing but a disappointment in the temperament and character they wanted in a daughter - though I'm sure neither of them could agree on what this would have been. Though I imagine it would be more like my sister for the most part. I have felt like an outsider in my family for as long as I can remember. My name doesn't help matters much. I have a completely unusual name, while everyone else has normal names. And, when I hear in my head my dad or mom saying my name, it accompanies a panic and feeling a tone of extreme disappointment

Not long after I was diagnosed with depression, I realized with my Psychologist that I have a Borderline Personality disorder. If you knew me at all during my middle, high and early college school years you will likely automatically agree. People who suffer from this almost always suffer from depression. They kind of go hand in hand.

My abandonment issues, my emotional state, my impulsivity, my history of intense and highly unstable relationships, my paranoia, my anger, my suicidal thoughts and behaviors.... these are all things that affect how I handle my bone disease. I feel like I have no friends who really understand me - and I am NOT meaning to hurt anyone's feelings with this statement. I feel that people don't make an effort to know me, to be close to me, to care about me ... so I withdraw, I hold back, I behave strangely. Ultimately, my mind says trust no one, but my heart desperately wants to. I cling to the only thing I know I have in the world, but fear that every moment with him is my last - no matter what he does or says to try and make me believe. I truly HAVE gotten better with this over time, I mean, 11 years later and we're still together has definitely taught me something. Every day I feel I can trust him more. But, it's not enough because I don't have an unromantic connection with someone that is like this. I don't have another person in my life that I feel would stand behind me no matter what, that would believe me, that would want me and care for me and love me in the way I need to be loved. My husband knows these feelings that I have all too well. He knows that every time I try to get close to someone or believe a relationship with them is going somewhere - it ultimately fails in every way because I couldn't get what I needed from it. And, I wish that having a husband were enough. Most days, it is. Other days, I can't take care of my home or my animals or myself.

All these issues and more are swirling in my head right now. I really feel like crying because I hold all this in. I don't know anyone other than my husband that knows all these things about me. In fact, I don't really know why I am sharing this with my audience here - the few people that do read this. I believe there is a reason, but I just don't know what. But, I am hoping that by cleansing myself of this fear, this sadness, this depressive behavior - that I can finally start feeling more whole as a person and start to heal in a way I need.

Why I Never Play Football

I don't consider myself a cathartic person. However, the reality is, outwardly, I am cathartic, but inwardly I refuse to let myself fall apart. I compartmentalize, I handle, and I suck it up and get on with it. Nevertheless, it would not be fair to share this blog and fail to share important personal experiences.

I remember in high school that I had a boyfriend that I was crazy about. He was my first true love. We were together for little over a year, and I absolutely fell apart when he decided he did not want to be with me anymore. I remember absolute devastation. I was so distraught over how it ended, many crazy things happened. A neighbor (whom I am still friends with to this day) and another dear friend of mine witnessed my ex attempt to attack me at my home one evening. After that, I completely lost it. We couldn't be around each other in school, our friends had to choose sides (I got the short end of the stick), my mother tried to hospitalize me, I made up crazy lies and told them to everyone, and I remember out of spite dating someone my ex had accused me of flirting with and trying to cheat with; it went on. I really lost my mind over the emotional and verbal abuse I endured at his hands. It took me months to repair the damage he did to me. Many people never truly knew what our relationship was like, but it was traumatizing. (But to be fair, I did my share of damages.)

I ended up running away from home many times. Partially because of the relationship drama, and partially because my home life at the time was hostile. I lived temporarily with an aunt and uncle who I always babysat for; I lived with friends, and eventually the person I dated in my bout of spite. Just before the school year ended, the band had a barbecue at a local park. It was tradition, and graduating seniors got to do silly stuff. So, I drove my new boyfriend to the picnic where my old boyfriend and his new girlfriend (who I might add did not like me in the least) dominated the scene. We decided at some point that afternoon that we were going to play touch football. It was decided that the girls would be VS. the guys. After the first few touchdowns, we girls decided to try to play smarter. We coordinated in a huddle and decided that each girl would pick a person, and break the rules and tackle him. We all picked a guy and broke the huddle. One of the other girls forgot who her tackle was, and we ended up running to and jumping on the same guy. My tactic was to go for his hips - I was a powerful little stick and I believed I could take him. The other girl decided to jump right on his torso as he was running forward and he lost his balance. They both fell, I came down hard on my hands, and the girl landed on my head.

My neck snapped 3 times and I blacked out.

I remember coming to and there was laughing. The people I had thought were my friends had believed I was faking, my ex being the ringleader saying to leave me there, that I was faking. They took his word for it and went off to have lunch. I don't care if these people read this either, I think what they did was rotten.

The guy and girl both stayed there with me. They asked me questions like what did I feel like. I remember feeling extremely funny. Numb. I stated that I heard my neck snap exactly 3 times - that detail I will ever forget. Then, I said I couldn't feel the left side of my body. Instead of calling 911, my boyfriend at the time called his dad and had him come pick us up. I couldn't really move well. I was dizzy, nauseated, and I felt extremely detached from myself. I remember waiting for our ride, and my ex berating me, saying I was definitely faking and that I just wanted attention. I sat there and swallowed all the hate they threw until the car pulled up to the park.

They laid me on the back seat and drove me to the hospital. At the hospital, I waited, laying on the backseat unable to move. Paramedics came barreling out of the hospital yelling about moving me and not dialing 911. They brought one of those plastic rescue boards out, and attempted to slide it under me. It didn't work so well, but they managed to have slide and pull me onto their board. The strapped me to it in a medieval fashion with this huge contraption over my head. My parents who I was estranged from at the time were called by the hospital and they were asked to come down and be with me. They did many tests, x-rays, needle poking, and morphine. I was there around 12 hours before they sent me home.

From this moment on, catharsis became a dying art. I learned to be stronger. No more catharsis.

It was not until years later when Dr. P in Germany asked if I had had any prior trauma. Some medical doctors theorize that Kienbock's disease might be attributed to accidents such as falling on your hands or arms. True, I did have a pre-condition with a radius that grew too long, but the health of my hand and arm rapidly deteriorated after this accident back 12, almost 13 years ago now. I need to let go of this and stop being angry about it, but it's difficult. Doctors thought I may have broken my neck and had completely disregarded any other possible trauma having occurred to my body. It is hard to think about it to this day - considering I am hurt by many things that had occurred at this time in my life. The use of your hand is more important than spoiled friendships, ruined loves, severe depression, and humiliation. I keep trying to convince myself of this - every day. Each day I feel like it is living with the enemy in my right arm/hand. It pales the comparison to trivial matters of heartache. Your heart can mend itself. Kienbock's disease destroys part of your body.