Thoughts of a disease-ridden mind

My new counsellor had me write about Huntington's and what it has meant in my life, which was a tall order but an exercise I quite enjoyed. I've only been to Eleanor three times, but I love her already and look forward to my bi-weekly visits when Mama drives me the hour up to Macon. I remember being hesitant when I was counselor-shoppng and Mama mentioned this Christian counselling place; in my mind I could picture little old Southern Baptist ladies being properly shocked by my version of "Christianity" and trying to fix me.

Eleanor is nothing like that. She says I'm like a breath of fresh air to her because I'm a Christian who thinks the same way she does, which apparently is unusual in her Christian circle, especially amongst her elderly contemporaries. She asked me last time where I stood now in politics, and I was a little reluctant to tell her I'm voting Democrat in the next election, but then she told me that she was voting for Obama, as well, and I was so excited!

Anyway, here it is:

I’ve always assumed I had Huntington’s. Well, not always – Daddy was diagnosed when I was around eight and I couldn’t have cared less when he dramatically sat us three kids down one weekend with our stepmother and informed us he was dying, would be dead in 10 years, as a matter of fact. Furthermore, each of us, his three children, would most likely inherit this dreadful disease. Ten years was an eternity! He said he was going to have to be in a wheelchair, and Melody and I irreverently wanted to know if we could take rides in it.

Jim, however, as the oldest, was properly upset. After Melody and I had been sent to the sofa bed in the living room for the night, Daddy said that Jim was “upset” and would consequentially be permitted to stay up later. We assured him that we were sad, too, and should therefore be allowed to stay up, but he wasn’t buying it.

Poor Jim WAS upset. Mama found him sobbing in his bed the Sunday night we got home, covers pulled over his head. And since Daddy and Pat had forbade us to tell our mother about Daddy’s illness (“She won’t let you come visit!”), it took Mama a while pry out of Jim what was bothering him. But she did.

And this was how she found out about the terminal disease that would claim her three children.

Even though Daddy’s illness had a name, Melody and I still never gave Huntington’s disease much thought. In our childish eyes it was impossible to separate the kind of person Daddy genuinely might have been and his Huntington’s symptoms, his craziness and bouts of violence. My first memory of Daddy, my first memory at all, was him hitting Mama in the living room of our little apartment in Stone Mountain while Jim and I ran back to our bedroom, crying, closing our door and pushing our little drawing table against it. He treated Pat, our stepmother, no differently, so naturally I assumed that was who Daddy was.

We hated our weekends with Daddy and Pat. They were constantly squabbling, and Daddy would frequently burst into violence; usually this consisted of him throwing items of furniture around the house or breaking dishes and screaming, but there were occasions where he would shove and slap Pat. When I was ten, Pat divorced him and he was sent to a nursing home. Mama drove us to see him each Friday and it never occurred to us that it was unusual for kids to hang out in a nursing home with their dad.

Only when Huntington’s began to become perceptible in my brother did it occur to me that this could be a huge factor in my life, that this could be me. Jim didn’t even have a chance to live  - it turned out he had a rare form of our father’s sickness, juvenile Huntington’s, he started becoming symptomatic when he was but in his early teens. He ran away a couple of times because of rather odd, childish reasons. As he got older and the disease progressed, of course his fits of temper grew more frequent, but I still remember how scared I was the first time Jim raised his fist to our stepfather. When Mama and Big Jim were informed by the police that Jim would have to go to juvenile detention is he should run away again, desperation set in for them and they sent him away to military school in South Carolina for a semester.

The first time I finally realized there was something very wrong with my brother, I was 14 and it was, in fact, the day we were moving from our house in the Atlanta suburbs two hours south to Columbus. I was outside perched on a blue trunk and Jim approached me, holding a camera of Melody’s in his hands, and asked, would I give this to Melody?

“Okay,” I said. “Why don’t you just give it to her yourself?”

Jim scowled darkly. “Because she thinks I like her.”

To say that I was astonished would be an understatement. My mouth fell open and I stared up at Jim. “She’s your sister!” I hardly felt this needed pointing out.

“I know – it’s gross!” Jim thrust the camera into my hands and stalked off in disgust.

After we actually were in Columbus, Melody wasn’t the only one that Jim was suspecting of entertaining incestuous desires. He told me one Sunday when we had been visiting a church that I had been flirting with him, making eyes at him during the service. And then our crimes became more serious. None of us were exempt from his accusations, but Melody and Big Jim were particular favorites of his: he maintained that they were raping him. He once went so far as to threaten Melody with a knife, just snatched it from her whilst she was cutting up apples and brandished it, screaming at her to stop raping him! We had actually already hidden the knives from him after one such occasion when he eased one from the kitchen drawer late one night and went after Big Jim’s mother, whom we lived with and who was in the living room on her computer. Happily for her, Mama Jean was quite robust for her age and Jim was so thin and, it turned out, not well versed in the art of stabbing, so she was comfortably able to hold Jim off while she shrieked for Big Jim.

We not only concealed the knife collection after that, we also installed an alarm above Jim’s bedroom door. Big Jim had long since turned the door knob around so Jim could be locked in at night or when he was misbehaving.

When Jim tested positive for Huntington’s just after he turned 18, it was nothing but a formality. We would all have been shocked had it been something else tormenting him. Of course I was terrified of the possibility, even the likelihood in my eyes, of having inherited the HD gene. For years every action, every thought, every tremor which could possibly have been construed as symptoms was magnified by my mind into hard evidence that my DNA carried that despicable gene. My journal from that time is filled with panicked entries documenting each new episode deepening this conviction, punctuated with assurances to myself that God’s will would happen. I have been called a hypochondriac more times than I can remember, but I honestly believe that the assumption that I would test positive made the actual process so much better.

 Melody was not having an easy time of it either. She was only 14 when Jim was diagnosed, such a load to lay on her thin shoulders. (I have yet to figure out what God was thinking with that one…it’s a hell of a lot harder to see someone you love suffering than do the suffering yourself.) Melody and I rarely mentioned to each other our fifty percent risk of inheriting Huntington’s, but when it was brought up I could see in her pale face how distressed she was and that made it all the worse. She was my best friend, virtually my only friend since to say our fundamental Christian mother and stepfather sheltered us kids is a broad understatement. Finding out that my younger sister had Huntington’s nearly destroyed any shred of faith I might still have had…couldn’t God have spared one of us? Would it have really messed up his eternal plan significantly to have created Melody disease-free?

At the time, Melody had no intention of being tested unless she began exhibiting symptoms. She wanted to live a normal life, getting married and having children, until and unless it became obvious that she had Huntington’s. I thought to myself that she was in denial. I planned to get tested as soon as I could – 18 was the minimum age for presymptomatic testing – and, assuming it was positive, I swore off marriage or children .

I dreaded my 18th birthday with all that was within me, counting off the days as the iron knot in my stomach tightened. When Mama and Big Jim proposed that I put off the process, suggesting that it was a mature decision to say the least and that there was no hurry, I happily acquiesced, quite relieved. Many of my parents’ choices concerning my upbringing were hardly stellar, but I will be forever grateful for their counsel in that matter.

But my decision to be tested, symptoms or no, never wavered. I wholly believed it the responsible route, and besides I sincerely desired to know my fate. And, sure enough, a year or two later I had gotten so used to idea of perhaps – and again, probably in my mind – having Huntington’s and being tested that I rarely thought about it anymore. Then I went to college at last when I was 21 and wanted only to savor the experience those four years; I assumed I would bet tested right after college.

Only that wasn’t happening. As soon as I got to college I began experiencing anxiety, panic attacks, depression, things I hadn’t ever had any experience with before. I knew that panic attacks were a common forerunner of Huntington’s, but anybody I pointed this out to told me I was behaving like a hypochondriac. When I switched from minoring in music to English because my hands and wrists began freezing up and hurting, I told everybody is was carpel tunnel since that’s what my teachers figured it was, but I knew it was Huntington’s. You couldn’t have it and play the piano.

Or drive. I was known amongst my friends as a bad driver, but up until that time I was a cautious, responsible driver. I didn’t even get any tickets until I was in college and then I was given them all the time. I loved driving so much – to me it was therapeutic, and the thought of not driving again, ever, made me want to cry.

The summer between my sophomore and junior years I went to the Emory Clinic in Atlanta for my required session with a counselor since I was presymptomatic. Ami Rossum, the genetic disorder counselor, strongly advised me not to be tested that summer since I was planning on studying abroad the upcoming fall, and she thought, should I be positive, I should be alone without knowing a soul with that new piece of crucial information. Also, I wanted to apply for some kind of insurance to help out financially should I ever have medical expenses.

So I went off to Russia for the semester, and Daddy died while I was there. I couldn’t believe the horrible timing – my whole life I had lived in the same state as Daddy and the one time I actually go anywhere, he dies. He had seemed no worse when I had seen him the summer before, only a couple of months prior. Thanks, God. Melody was with him his last couple of days, but I was literally half way across the world.

I couldn’t believe how shaken I was by Daddy’s death. It’s not like I was surprised, and we had never been particularly close. He adored us kids, but I had never admired him and blamed him immensely for having made my mother miserable during their marriage. But I went behind the dormitory we American students were staying in and couldn’t stop crying. Also I felt like a horrible human being for not even going to my father’s funeral. If I left Russia, it being Russia and all, there would be no coming back. It was only September and the program lasted until December, so I wouldn’t get any credits for the semester. Mama had told me that she thought that I should stay, although of course if I really felt like I needed to come home I should. I felt better when Mama told me that the Melody and the few other relatives involved had agreed to postpone the memorial service until I came home, but I still felt so isolated.

Melody was the one to make the arrangements. Melody was the one who took off work and went down to be with him when his lungs began to cave in on himself. She held his thin hand and looked into his fading blue eyes. I’m the oldest daughter, and I wasn’t even there.

Melody changed her mind about being tested. After being with Daddy, she decided that the mature decision for those in her life was to go through the process now, now while she could still arrange as much as possible herself. She applied and was accepted for long-term care insurance and did the counseling session with Ami. She had her blood drawn and sent in to the lab. And she didn’t tell a soul.

Not until Melody had no more than a week or two before she was to find out the outcome did it occur to her that it might be wise to give Mama and me some warning. Yeah, a mere few days was not adequate time for me to emotionally prepare myself for this life-altering news. I had never even considered that Melody take the test before I did. I was the one who had always wanted to and she hadn’t. This was not the way it was supposed to be!

I spent every spare moment robotically pacing the trails around campus, praying and oh, so afraid this would yet another example of God answering in the exact opposite of my petition. I told God that I would so gladly take on a positive result myself if only he spared Melody.

Yeah, he didn’t. That was a dark, dark day when she called. She was quite calm, which is more than I can say for myself. I felt debilitated, drained, and went about my life as in a dense haze. It rated as the second most horrible day of my life, the first of course being the day Mama told me about Big Jim and Melody.

So I wasn’t doing any praying the fall of my senior year when I went through it myself. Anyway, finding out I had the gene myself was rather anticlimactic after the ordeal with Melody. I also had a fantastic support system. I had a whole entourage in tow when I drove the two hours from Chattanooga to Atlanta to get my blood taken, and the three of them were so cute crowded into the tiny room and asking questions of Ami as she drew blood. Then we met Melody for beer and burgers before the drive back. I reflected often that day that the reality couldn’t have been more different than how I used to picture it way back when; certainly I never would have guessed that it would be a day I would enjoy!

Mama and Melody escorted me to Emory when the test results came in. It being Thanksgiving break my girls were scattered to the respective homes, but my roommate Abigail and our friend Meghan insisted that they wanted to be present and that they would meet us in the waiting room. (I have great friends!)

I will never forget that sensation of peculiar calmness that persisted even I sat waiting with my mother and sister.  It was bizarre to think that this was the dreaded, long-awaited day of reckoning. We paged through magazines and made small talk.  My honest response when asked was that I was fine – actually fine! But then I asked Mama and Melody the same question and they both confessed they felt strange… they did look tense, come to think of it.

I wanted to weep. How could they not be freaked out? It was far worse to see a love one experiencing pain than enduring it yourself – I should know!

And then I was also becoming anxious concerning about Abigail and Meghan’s absence. The clinic was ridiculously tricky to find and they were both running late. I dreaded the prospect having to tell them of being positive myself and couldn’t think how I’d do that – I was no genetic disease counselor! I guessed I would be composed enough to inform them, but I couldn’t know that, could I? What if I cried? Melody had said she hadn’t expected to cry but had. I really didn’t want to cry, especially in front of those I cared about. I had considered the option of hearing the news, leaving the others in the waiting room, but I couldn’t stomach the thought of having to break bad news to them myself.

Abigail and Meghan didn’t make it in time, and I did have to tell them. Abs hurried in literally seconds after Ami had told us I had tested positive, and I got up to greet her and tell her the news. Fortunately my prediction had proved correct and I was able to function. Mama and Melody had gone silent upon hearing the verdict – I couldn’t bring myself to look at them - but they quickly recovered themselves. And Meghan didn’t arrive until we were getting ready to leave, after Ami had shared all the sordid details. My CAG repeats were, at 56, high even for Huntington’s. Lower than Jim’s, of course, but higher than Melody’s “normal” 49. Huntington’s disease usually has a middle-age onset, but I probably wouldn’t have many years left as an independent adult.

I didn’t – not even two, actually. Exactly a year and eight months later I moved back home – well, to Montezuma, anyway. After I graduated, I moved to Memphis for a year with Abigail, and by the end of it my neurologist told me I should no longer able to driving, having become a hazard to the population at large. And then I was scarcely able to hold onto the two jobs I was working, as a rapidly deteriorating memory was apparently not something employers love.

My first months back down here in this redneck little town that I’ve always hated were hell. I spent my time bitterly obsessing about how absurdly unfair my lot in life was. I couldn’t stand to be on Facebook lest I glimpse statuses about jobs and school or photos of various sojourns abroad. I just could not for the life of me figure out why God would single me out from my peers to this way. I had once had dreams and abilities as legitimate as any one of theirs – why me? I felt as though I had taken a few giddying breaths of freedom after leaving home at last only to be sent home with my tail between my legs, worse off than even before since now I had not even the luxury of being able to drive and had to have my mother drive me even across town to the library. And I was 26!

I can’t even articulate how grateful I am that I’m not there anymore. I don’t know when the change occurred - it was that gradual. But sometime last fall I decided to start praying – yes, I prayed again! – that God would grant me contentedness. I really could not see myself content here, but no harm in asking, right? Around that same time I read the book that I’m positive saved my Christianity – Evolving in Monkey Town, which was a read I could have used years before. I was finally able to grasp that I call myself a Christian and yet have virtually nothing in common with the rigid, close-minded, hyper-fundamentalists I had grown up with. It’s so exciting to me to look at Christianity from a completely new angle and discover what it means to me and not my parents.

In December, I was startled as I was doing my daily prayer for contentment to realize that I was, in fact, content! I started laughing aloud in sheer disbelief. How did that happen?! Not ecstatically happy, of course - so, oh, so much would have to change for that to ever happen – but I’ll take this blessed contentment. I’ll bask in it, even.

 

Confessions of a Fallen Christian

I've held out as long as possible against writing this post because I know that it will concern virtually all of my Christian friends/acquaintances/family. I know pretty much all of you are aware of my prodigal return to Christianity after struggling with my faith for years, but I haven't shared many of the details with most of you.

My faith is somewhat more, um, radical than it once was. I could not be more different than the Christian I was 10 years ago and still be a Christian. Please don't worry about me - my Christianity is so much more genuine to me now than it's ever been since it's not just what my parents believe ... it's what I've thrashed out for myself. I don't believe there is one best type of Christianity since we are all different.

I read Evolving in Monkey Town by Rachel Held Evans (and also her awesome blog) last fall, - I don't think it would be an overstatement to say that she saved my Christianity. The primary reason that her book made such an impact on me is that it showed me that I could still be a Christian and not have to buy the “whole package,” so to speak. I could be a Christian and not believe in the inerrency of the Bible. I could be a Christian and not have all the answers as to how God chooses who to send to heaven or hell. I can observe the barbaric, fickle God of the Old Testament and not have to reconcile him to the unorthodox, loving Jesus of the New.

I don't believe the Bible is inerrant...there, I've said it! I've discussed it in my blogosphere but have never told actually told anybody.

I DO believe in its inspiration - but the men who wrote it were still only men. They were but recording about their impressions of God, but their impressions were not necessarily correct.

I just could never have gone back to using the Bible as the blueprint to life, as the sole and exclusive authority. Especially when I became interested in human rights as a career and yet God had permitted, nay, commanded the Israelites to commit genocide. Especially when I'm emerging from patriarchy and the very mention of sexism brings a bad taste to my mouth and God as depicted by the Bible is a mean misogynist. Especially since I am so convinced that gays cannot help who they are and why should they be sent to hell because of who God made them? The excuses for these and other of God's actions that were drilled into me as a child now strike me as hollow, weak arguments. I know myself well enough to know I could never re-enter a relationship with a God who actually literally performed those deeds, even though I'm dying and should be thinking about the eternity question.

I know that I have been told time and time again (and told others this, myself) that any seeming inconsistencies in the Bible are due to my lack of understanding and God’s ways are high above ours - but, to be honest, that’s a little insulting. God made us intelligent, rational creatures in his image, but when we have questions we’re just to blindly accept that somehow God works it all out?

It's been so liberating, to not have to worry about, as a Christian, rationalizing and stretching the Bible to make sense. It's a lot of work!

I'm so happy. Please don't worry, don't be scandalized...I promise I'm not dropping off the edge into heresy. This makes so much sense!

Hey Lawdy Mama

In all the years since the Years of the Locust ended, Mama has never mentioned her contribution to that miserable era. While I would gladly lay all the blame of it at the feet of the Stepfather, I know within myself that Mama was quite enthusiastic, herself, about imposing that suffocating lifestyle upon us, her family. Indeed, she was the more passionate advocate of the two in some areas, specifically clothing and the frowning on higher education.

I always assumed that Mama was not proud of her role during that time and was thus reluctant to bring it up, but she recently said something to the effect that her intentions were pure on the way down, implying that hence she was free from blame.

As if the meaning well of a parent negates the internal damage inflicted upon a child.

I bristled a bit and went on to recount some of the ridiculous inflictions she had laid on me as her nearly-grown daughter, and then she said, well, if it was so bad, I could just have left as an adult - adults are responsible for and accountable to themselves.

I couldn’t believe what I was hearing. I had never been allowed to become an adult - my parents wouldn’t let me. Up until the day I left home at 21 I wasn’t allowed to think for myself or to make any decisions.

I don't think Mama grasps how bleak that time in my life was. We kids weren't allowed to have personalities. We daughters, although the four of us are vastly different from each other, were meant to be clones, all never working outside the home, all living at home until our father approved of a man to marry, all to pump out the maximum amount of kids possible and homeschool them and raise more clones to do the same thing.

How could Mama possibly understand how damaging this was for us? She had a normal, happy childhood. She had a healthy social life and was permitted, even encouraged, to follow her interests. I find it sadly ironic that her parents had such a happy marriage and yet she and Big Jim wanted something better because her parents and his were “unbelievers.” That experiment went well...

Since being back home I have made various comments to my mother, feeling around, striving to get an accurate idea of how she feels about those years. I have said, "Do you remember when you told me I couldn't sing 'Somewhere Over the Rainbow'?” or when she inquires, knowing I am a John Grisham fan, whether I've read his Skipping Christmas and was surprised when I told her I had not and that in fact she had not permitted me to read any John Grisham before. She didn’t recall any of it - they were random rules with no principle. How can she have been so dictatorial to me and not even remember what she did? I haven't told her about the time she forbade me to go see a production of Ragtime in which my voice teacher was the star and invited me to - I have been listening to the score lately and Mama thinks it's gorgeous inspired stuff.

All of my books were censored. I couldn’t read The Hunchback of Notre Dame because there was a brief sex scene in it. Shirley Temple’s autobiography was anathema since it “dwelt too much on Hollywood,” and the same went for a book about the making of The Sound of Music. We didn’t watch many movies, but the ones we did could only be PG.

Mama was also the one more concerned about modesty - usually. Big Jim would randomly pronounce an item of clothing immodest for an obscure reason, and then he had this thing with collar bones and necklines - he always said the Lord had given us collar bones as a guide to how high the neck line should be. Apparently the collar bone of a male was useless since this applied only to us girls.

But Mama was the hard core enforcer of modesty. Whenever one of us girls would acquire a new article of clothing, she would make us parade up and down the hall under Big Jim’s male gaze to be sure that nothing was clung to or any skin above our shins exposed. We would bend over to make sure that nothing fell out. Only if it passed inspection could we then wear it.

The resentment that festers deepest within me, though, is how wretchedly guilty I was made to feel because I was naturally bright. I had a insatiable appetite for all things academic. Most parents would have proud to have produce such a child.

Not mine. A intelligent person, you see, was naturally inquisitive and would be more likely to question the order of things - my overt love of learning was viewed by Mama and Big Jim with suspicion. They attempted to provide appropriate outlets for my energy. Mama signed me up for a correspondence course on herbology which was actually an extremely unprofessional setup and which I did not enjoy. Mama was also intent on one of her daughters taking on the profession of a midwife and took Melody and me to midwifery seminars. Anyone who knows me at all will agree with me when I state that I could never have been a midwife, but since we children were expected to turn out in a specific manner and weren’t permitted to have personalities, this hardly mattered. The ideal female would learn a profession which she could conduct from home and later carry on into married life as a “ministry.” Melody’s long-time interest in massage was thus encouraged since it happened to fit the criteria.

My interests, not so much. My classical education pretty much ended when I was 16 since most everything thereafter would be useless in the future that was expected of me. I begged Mama to let me take geometry since I had loved the last math I had taken, algebra, so much, but she said no, firstly because she had never used her high school geometry in her practical life, and also because she had disliked it and didn’t want to check it.

But I kept on rebelling. I checked out books on Spanish and trigonometry from the library and tried to teach myself. Of course I got no where.

Someone once marveled to me how incredible a job my mother must have done at homeschooling us kids since I did so well, scoring high on the ACT, testing out of math in college. I felt like howling with laughter and informing them that I went to college in spite of my mother. My parents were an obstacle to my later life. I cried myself to sleep, oh, so many nights because I could not for the life of me figure out why, why if I never to go to college, God wouldn’t take away my burning desire like I’d pleaded with him to.

I can’t even fathom doing that to my child, denying her, not only her dreams, but her very instincts, forbidding her to even be herself.

Which is why I’m amazed at how unmoved my own mother is by her having done it to me. I adore her and she’s so brave and strong, and I know she loves me. It perplexes me.

In which I ruin Christmas

I'm concerned about myself, Journal.

I had an episode on Christmas Eve when all the siblings were here. (We were holding our Christmas on Christmas Eve, remember.) As we were about to sit down to our meal, Jewell and I were in the middle of a discussion and she, of course, said something characteristically ignorant and illogical. And I, with my irrevocable need of attacking all things I deem incorrect, I gave an example that proved my point and made Jewell mad - she went to the bathroom to cry.

Well, then the boys started in on me, all glaring in my direction from across the table. Josiah muttered darkly, "Jerk!"

And this did not help my mood because the boys always side against me - they think I'm evil and look for opportunities to bate me. I don't understand the fact that they haven't once exhibited anger towards their father and yet I'm some kind of villain to them. Also, they hadn't even heard most of the conversation and so it was unfair and unreasonable for them to be angry with me.

Which is when Melody walked into the room and said something how none of us should be taking sides today and that we needed to be quiet. I told her the boys were angry at me for no reason and thus I was entitled to explaining what had happened so they could see that Jewell had actually been the first one to grow hostile in our discussion. Mama said that Josiah and I couldn't speak for the remainder of the meal.
I was so angry. I literally sulked for the rest of the day, crying back in the room I share with Georgia. It sounds so ridiculously childish, and to be honest, it doesn't sound like me at all. Before I left home, I was known as the resilient daughter who didn't take things personally - Melody was the sulky one.

And yet not once when I was back facedown on my bed did it occur to me that I might possibly be overreacting. My hurt feelings were a hunderd percent legitimate!

Even when Mama came back to find me and tried to talk sensibly to me, I wasn't convinced. I was mad at her because I was the only one of her children who had her back and she was more concerned about her other kids than about me. I said it wasn't easy being down here with no moral support. Yeah, I was completely feeling sorry for myself.

Only when Mama started talking about how she concerned about my mood swings and said she could detect signs of depression did the mist began to recede, and I was left to writhe in utter humiliation for how I had managed to ruin the one day of the year we all had together.

Do you realize what this means for me? How from now on out I won't be able to trust the legitimacy of my feelings? Up until now I have noticed the progression of my Huntington's as much as any other observer, maybe even more. I knew before my neurologist told me to stop driving that I was becoming a hazard to others. I was dismayed at my both my jobs at my ineptitude to do a good job, though of course my employers noticed that too - "If it weren't for your sweet spirit, you wouldn't even be here" - I was aware of the dilapidation of my handwriting and my inability to sign my checks with hardly more than a scrawl before Mama commented that I no longer had artistic handwriting. I have also noticed the increased difficulty I have speaking - it's becoming more slurred.

But this - this reacting hysterically to what was so not a big deal - it never so much as crossed my mind that I was doing anything wrong - someone else had to point this out to me, and this scares me.

Mama thinks I should go to counseling, so Thursday is my first session. I've had many negative experiencese with counseling over the years, but my last one, my brilliant psychiatrist in Chattanooga, was amazing, and Melody's counselor has been helping her so much that I'm keeping my fingers crossed.

The Saga of Melon Rind

It was love at first sight for me. I was not a fan of stuffed animals - not one remained from the impressive collection I had as a child. But when Georgia showed me her newest toy that Mama had bought her (George is the youngest of eight and the sole girl after three boys, and she is ridiculously spoiled), a fat soft white sheep, I looked into his dark eyes and lost myself. I wanted him. His name was Melon Rind, George said (um - WHAT? Where in the world did she come up with that name? I guess she had to get creative since she had so many freakin’ animals...)

That was the summer I went to DC to intern at the nonprofit think tank, Institute for Policy Studies. Two months I was gone, and when I came back, Georgia had moved on long ago to a new animal. I asked her where Melon Rind was, and she didn’t even know! I found him under the bed, dusty, neglected. I asked Georgia if I could take him with me for the semester to school, pointing out that she hadn’t even missed him when he was lost, and she agreed. So I did!

Melon Rind and I went through a lot together. That was my toughest semester at school, it was the semester I tested positive for Huntington’s disease and my panic attacks returned with a vengeance. I had to drop credits beneath the actual full time load because I couldn’t handle them. 11 credits, one less than what on campus students were required to have. Of course everyone there was so lovely to me, my professors worked with me far beyond the call of duty. Dr. Jackson, our history SIP professor, was the first professor I cried in front of. Dr. Follett, my advisor and favorite professor. The British Romanticism professor, Dr. Ralston, who had me email my presentations to her since the thought of just talking in front of others nearly made me pass out. The student development office was so kind and understanding and assured me that they would make sure I graduated and to let them know if I needed to drop any more credits.

But I was so horribly depressed. I cried all the time. I was frightened I wouldn’t make it through my last semester and was angry at God for allowing me to live my dream of being at college only to not be able to experience it fully and maybe not even get my degree. The humiliation of my bad grades never ceased to sting. Just the possibility of having to say something in class made me sick with terror and made me break out in a cold sweat. That happened more than once in Brit Rom, where Dr. Ralston appreciated plenty of student participation. I naturally really enjoy public speaking and class discussions, but of course I wasn’t myself anymore. I was a shrinking shadow of myself. One time in particular Ralston was going around the class and having us share what we had written in the journals we were required to keep. Dabney and I always sat at the back of the room, so we were always last to be reached. I was shaking like a leaf and my heart was going crazy. Dabs was gazing at me with concern and whispering if I was okay. I told her I was leaving and slunk out of the room, red with shame. I knew when I opened the door, the eyes of everyone in the room were on me, inquiring. Out in the empty hall, I sank against the wall and covered my face with my hands and cried.

And then the same thing happened in Dr. Follett’s senior seminar, Modern Europe, which all of us history majors were so excited about. That class was all about talking, but of course Dr. Follett knew what was up with me and didn’t press me. It was hard to get through a Socrates style seminar, however, without saying a word. At first I would do my presentations with dear Christy, who would take over all the talking part after we had researched together.

There was one night though that Dr. Follett made a casual remark about us having to talk about some required reading after our break, at the beginning of the second half (it was a once a week 3-hour long class). I obsessed about this piece of information for the entire hour and fifteen minutes before the break, on the verge of bursting into tears the whole time. Of course Dr. Follett would probably not force me to actually discuss it, but he’d probably ask if I had anything to add, and I would have to say no and feel utter humiliation, and that sounded horrible and I was sure I’d start crying. So during our break I managed to convey to Christy that I was leaving - apparently I couldn’t even speak normally to her. She offered to come with me, but I said no, that I was going to take a walk, which I did. I walked and walked. It was like a flashback to being a freshman - walking soothed me somewhat and I needed much soothing.

It didn’t work this time. I kept crying and was still full of helpless rage towards God. So I headed back to the dorm, hoping fervently that no one would see me in my wild state. Jess was in the elevator. She was understandably surprised to see me since I was supposed to be in class. I stammered something, and Jess eyed me and said, “Let’s go for a drive.” Oh, Jess.

The seminar was the class I ended up dropping, but I still audited it, which was amazing because I didn’t have to stress about it and didn’t have to fret over getting by in a senior seminar on the generosity of my professor and classmates.

Poor Melon Rind soaked up so many of my tears that semester. He was just so huggable and fat and soft! I doubt he knew what he was in for when I decided to take him with me. I had no idea! My last junior semester had been fine! Now when I look back I can see I was undergoing the first signs of depression the summer in DC and it really set in during the fall. That was not fun.

Little did I know how soon I would be tragically parted from my beloved sheep. I asked Georgia about transferring her ownership to me over Christmas break, and she was game. Then I made the mistake of telling Jewell that Georgia had officially given me Melon Rind, and she was furious. Why, I don’t know, but I’m pretty sure she was mad at me anyway and was using this as an outlet for her wrath. She informed me that Georgia was just a little girl! and had no idea of what she was doing! and she was telling Mama! Little vixen...and tell Mama she did. I wasn’t worried in the least because I had reason on my side.

Yeah, I was wrong. Mama said I couldn’t keep Melon Rind, and when I reminded Mama of George’s countless other animals and how she had already gotten over him when I came home last summer, she told me I was behaving like 5-year-old, which was how old Georgia was. I was so livid. It was all so unnecessary!

I think Mama might have been having similar feelings, because for my birthday in February she sent me the most tacky, huge stuffed frog of a hideous iridescent green - she never gives me stuffed animals for gifts, because, like I said, I’m generally not a fan. I hated him from the moment I saw him, as did the rest of the roommates. Only Meghan paid him any attention - she said that Taco Shell - Jess said we should call him that - was not to blame for not being Melon Rind.

Oh, Melon Rind. But I didn’t miss him as much as I expected to. Part of that was because, since my diagnosis, I had been seeing an amazing psychiatrist who put me on a drug, Cymbalta, which he was comfortably sure wouldn’t have any horrible side effects like all the other meds I had tried. It was amazing, how quickly I became a new person. I was radiant and happy and enjoyed sharing my two cents with my classes and had a great time with my senior presentation on the Russian Revolution. The only side affect I noticed was I had less of an appetite and shed a few pounds, which was quite all right with me! Also, I was transferring my affections to an actual living being - well, two actually - Philip and our turtle Bambi. But those are other stories...

One gorgeous spring day as I was leaving the room for class, an ecstatic Meghan appeared in our room clutching a fat stuffed lamb. She had spotted it on sale after Easter at Target. Aw, Megs! He was cute even if when I took him in my arms I noticed he was stiffer to hug than Melon Rind. Others actually mistook him for Melon Rind, exclaiming that he was back, but I always knew the difference.

And then came the day of my college graduation. Mama and Melody and Mama Jean and the kids all came up the day before. When they came up to campus and into our room full of boxes belonging to us four seniors, Georgia’s eyes flew instinctively to the sheep on my bed and she went over and picked it up. She carted it around with her the entire time.

When we were leaving to get dinner, Mama told George to release the sheep.

“Mama, can I have it?” Georgia asked. (I know, she’s a bit spoiled. I don’t even know why she thought that sheep superior to Melon Rind - I guess because it was newer.)

Mama said no. But my mind was racing with the possibilities.

I narrowed my eyes. “You can have it if you give me Melon Rind.”

Of course she said yes. She would have already have given me the sheep, remember.

And so today Melon Rind once again perches on his throne, my bed, and this time he shall never be taken from me again. Which is good because both Bambi and Philip were taken away from me. But those are other stories...

In case I was ever tempted to return to my Fundy roots...

I’ve been reading up lately on the Chuck Phelps situation, since he just resigned from his position as board member of Bob Jones University. Phelps, in case my audience doesn’t have as much free time as I have at the moment to follow the situation, is the guy who was the pastor of the church where one of his congregation members, Ernie Willis, raped and impregnated a 15-year-old girl and knew about it and did nothing!

Sorry, “nothing” is the wrong word - after the girl, Tina Anderson, and her mother informed Phelps of the situation, he had Tina stand in front of the congregation and apologize for being a stumbling block and he refused to believe she was raped - it was an “adulterous affair.” He arranged for Tina to spend her days of pregnancy in Colorado with a preacher friend of his and the baby was given up for adoption. Then she was sent back home and continued to attend church with the perpetrator, her rapist.

Yeah, because he was still permitted to come to church! Phelps said that the church is to encourage struggling Christians, but Willis was beyond struggling - he was a criminal and a pervert, only most of his fellow church members didn’t know this.

The case was reopened recently - this happened in 1997 - and Phelps was subpoenaed to testify and was caught lying under oath. He said up a website defending his honor and insisting that Tina was the one being dishonest. Willis was convicted of forceful rape.

Sometime during the trial, Bob Jones University invited him back to the board, since he had been given the boot by Maranatha Baptist, where he had been president. Of course, there has been quite a bit of pressure to BJU to give rid of Phelps, but Bob Jones III officially backed up Phelps in a recent chapel, proclaiming that Bob Jones University would never endorse a man who swept sexual abuse under a rug, - "we're not Penn State, folks."

Phelps actually just handed in his resignation, but he never apologized or indicated that he was wrong in any way. He just didn't want to interfere with the "university's mission."

On one of the websites I was reading, I came across a link to the transcript of Bob Jones III's interview with Larry King in 2000, when the university was getting all that bad press on account of its interracial dating ban. I was disgusted, although not surprised, at Jones's words:

“ I've learned that religious freedom, and particularly Bible-believing Christians, that maybe we're the most unprotected and misunderstood and maybe despised minority in America. I think some of this is frightening. I think the hostility toward Christianity that has been exhibited in all this should frighten all freedom-loving people and certainly should frighten Christians. And I believe it has. I believe that somehow the university's been allowed of God to be brought into this thing through no fault of our own, and I think as a result a lot of people have had a wake-up call that maybe we're about to lose tolerance toward religious freedom in this country. And I am really, really concerned about that.”

What?! Delusional much? No, because I know ,poor little Bob Jones III, how you have been agonized by the many trials, tribulations, and persecution you've been through. You and your fellow Christians, all 80-something percent of Americans, have suffered indeed! How arrogant, to wine about his non-existent problems and imply that the horrors other minorities in American are trivial! No wonder he didn’t want blacks marrying his Caucasian students - he must have a low opinion on all they’ve been through and are even still experiencing. Dude, the gay community is getting much more crap than Christians - but then he thinks homosexuals are perverts and sinners and so need not be mentioned.

But they are people, too. And maybe he’d better get rid of that beam in his own eye, his own pervert-concealer in residence, Chuck Phelps.

Rant, Part II

Here's my before-mentioned Facebook message to Jewell:


Hi, there, Jewell! I heard that you are now employed at Ruby Tuesday as an hostess - I'm so relieved for you! I know that feeling well - I hope you work with great people. Melody and I both agreed the people we restaraunted with were the bottom of the barrel, the most depraved we'd ever met - so that should be fun!

Mama gave me strict orders before you came that I was not to speak to you about Big Jim, and I promised her I wouldn't. She is extremely concerned - a little too much, if you ask me - about not slandering Big Jim and making sure you guys have a good relationship with your father and all that jazz. However, I could never forgive myself for not being honest with you, and I think it's disrespecting you treating you on the same level as the boys and George - you're 18 and out of the house.

I know you think that basically Big Jim is a decently good guy with a rocky period in his past for which he is sincerely sorry. I know as well as anyone how charming and fun he can be. But another strong trait of his is arrogance and manipulation. He is a star at the whole manipulation thing! Dude, he had Melody convinced for YEARS after what happened between them that somehow he was the victim! I was 21 when I left for college, and for most of that time I was convinced that Big Jim was such good Christian and that any struggles I had were my failing, not his.

Jewell, what can I say to make you see how he is not genuinely sorry in the least and in fact thinks what he did not a big deal and that it was actually not even his fault, that it was Melody and Mama's? Because I know how you pride yourself on having your own opinions and don't like accepting others' for yourself, and yet this should not be a situation between you and me, about you and Mama. This is so much bigger than that, so much graver. I swear I'm not writing to impose my opinion on you. I love you so much.

Here's the thing: EVERYBODY who knows about Big Jim and Melody thinks what he did sick and that he should never be given custody of ANY child, including professional counselors. Even Aunt Kathleen wrote Mama and told her this. The only people who do not feel this way are Big Jim's impressionable and slightly biased children and his mother, who I find it ironic that Big Jim is such great allies with because he has called her crazy on more occasions than I can remember. Melody's counselor said that Big Jim is a perfect example of a sexual predator, since he has been behaving inappropriately to her since she was 12 and yet didn't actually perform sex with her until the week after her 18th birthday. How can this be cooincidence? And up until I was in my late teens it was the same way with me. Those massages where he would go up under our nightgowns right near our privates and also right by our breasts when he was doing our backs - that's not the way a healthy father treats his teenage daughters. If I hadn't been uncomfortable and made up excuses for him to massage me, who knows what might have happened.

After the trial, I am more sure than ever that Big Jim is not sorry in the least. His attorney's open argument sounded like it could have come from Big Jim's own lips - because I have heard him say it - saying that Big Jim was drivin into his actions by his wife, that Mama wouldn't have sex with him and so naturally he turned to the slender arms of his beautiful stepdaughter. What he didn't say was that the reason Big Jim and Mama so rarely had sex then was because, per his choice, they were sharing a room with the boys and Georgia.

And then when I was on the stand - Mama's attorney had me tell about what inappropriate things Big Jim had done when I was living at home, I looked over at Big Jim as I was talking and he was glaring at me with pure contempt. I wasn't expecting to him to look sorrowfully at me - what he had done to me was nothing compared to how he messed with Mama and Melody - but it struck me how what he did was so oviously wrong and here I was describing it in graphic detail for the judge, and Big Jim wasn't sorry for what he did to me even though I was looking him in the eye.

But do you know what really gets on my nerves? When Big Jim first started talking about getting custody, he told you guys that no way in the world would he separate the kids. But when it turned out that he couldn't get Georgia, too, he decided he would just get as many kids as he could, the three boys, even though he knows more than anyone how cruel it would be to separate her from her brothers. Splitting them up is clearly not the best thing for them, but because Big Jim is much more concerned about what he wants than the welfare of anyone else, including his kids, he does what he wants.

So a couple of weeks ago, Abigail told me that they were discussing sociopaths in her med school class and told me she was sure Big Jim was one. I typed in "sociopath" into Google and read the first list of traits, and it was uncanny how well it described Big Jim - only one or two points didn't match. I showed Mama, and we were amazed. It explains him, down to the sexual abuse and authoritarianism and the parasitic lifestyle, meaning he spends a lot of others' resources (Mama Jean bought his house and is paying for his attorney). Jewell, I know you don't want to read such things in relation to Big Jim, but please, please, read this article that I attached. It's not long. Please, if you love me at all, try to see this from both sides.

I hope you have a good weekend. I really wish I could see you again and spend more time together - Mama and I are going up to Macon tomorrow to go shopping since I am going to Homecoming at Covenant in October, and it would be fun if you were with us. Have fun with your training!

Love, Rebecca



There it is - everything laid out, and Princess Jewell has vetoed it. Not only that, but she offers to testify FOR Big Jim. I want nothing to do with her.

Oh, my goodness, I feel another stepfather-bashing welling up within me. Who is this guy? How can he get away with so damn much?

So, ever since Mama filed for divorce, she has been spending a decent amount of time conversing with the IRS. A little background is needed here: my amazing stepfather is an extremely paranoid guy, full to bursting with conspiracy theories. When I was living at home, it was The System this and The System that. Medical System corrupt, Education System corrupt - we never so much as went to the doctor, because of course any doctor would just want to take advantage of us. I think one of the boys might have had to get stiches from the ER once when Big Jim's crafty butterflies weren't sufficient.

And all the boys and Jewell were born at home. At first it wasn't just for religious reasons - Mama had always wanted to give it a try, but Daddy wasn't buying it. Of course, Big Jim was all about doing things the natural way - Mama had a great midwife in Atlanta and great experiences with Jewell and Clay and Josiah being born in the splitlevel in the suburbs while we older kids stayed with Grandpa and Grandma.

By the time Sam was born in the wilds of Kentucky with the help of  a stern Mennonite midwife that had never so much as given Mama a prenatal exam, Big Jim had begun his decline. He had already insisted that Josiah not be given a Social Security number - didn't want his son to be registered with The System, wasn't going to sell his son for tax returns, and now he went one further with Samuel - he didn't want Sam to have a birth certificate. He said he and God knew when Sammy was born and that was all that was needed. Mama wasn't too thrilled, but she was just the woman and, like Eve and her forbidden fruit, was deceived. So Sammy went certificate-less.

Until now. The first thing Mama did when she filed for divorce was start the process to get the boys SS numbers and Sam a birth certificate. Georgia May lucked out when she was born five weeks early in the hospital and provided with both.

Of course, it has taken a while, but Mama found out that from the IRS that she would get a nice check for the boys, so that made it even more worthwhile - she can really use the money. She's already using my American Funds money I got from Grandmommy when I was 21 for her current attorney, who's great but twice as expensive as her last attorney, and I know it killed her to ask me that.

Mama has spent so much time on the phone, sending things back and forth to Kentucky for Sam's certificate, going to Macon an our away to the IRS office, but at last she got the numbers and certificate AND a check was sent - to Big Jim.

I KNOW. Both Mama and Big Jim's names were on the check, of course, but Big Jim informed Mama that there was no way he'd signed his signature unless the check were mailed directly to him. He never got her signature, but he gave her about a quarter of the amount, telling her this was what she deserved from what he'd figured out. He'd have to have forged her name in order to deposit the check, or else some stupid teller let him do it with just one signature. Mama is having the IRS send a copy of the deposited check to see if he forged her name.

That sonofabitch. How can I NOT hate the guy?

AND Mama is so low on funds this month since the child support situation hasn't been figured out by the lawyers, and it's Christmas this month! And she's only getting the money for the house from Big Jim this month; he payed her pittance for child support for all five of the kids this past year, but at least it's better than what she's getting this month - nothing.

Of course, if the Stepfather had had his way, he would not have even paid for the house, let alone for Georgia. He makes so much money and he doesn't even have to pay for his stupid lawyer or for the house he's living in since his mother is providing him with both.

He's so evil, so very evil. He's trying not to give her any of his money and is trying to give her practically nothing of that IRS money that I think is rightfully all hers but is at least half hers.