More disillusionment...

Once again I am washing my hands of my sister Melody, once again I am swearing her off, telling myself the emotional turmoil never absent after an encounter with her is just not worth it. Always, always I end up crawling back to her and pouring out my heart to her as she listens with limpid eye and tilted head, only to inevitably have my words, usually twisted, thrown back in my face at a later date. Note the pattern, Rebecca! On this particular occasion, however, she blindsided me completely with a chain of criticism on - my apparently flawed coping mechanisms of my Huntington's disease? What the hell! That is the very reason I have always returned to her, that and the fact that she and I (well, and Jim) share the same history, the same father - Melody and I have more in common with each other than with anyone else in the world. She is the only girl I know who has Huntington's and my sister - that should be enough, right?

Not for her. Last week I saw her, stayed the night at the apartment she shares with our sister Jewell so that we could go see Les Miserables at the Fox Theatre. Now, anyone who is the slightest bit acquainted with me is aware of my affinity for musical theatre; get to know me a bit more and I will be sure to inform you that Les Mis is my favorite musical of all time and has been since the day I heard those first bars of "Look Down." Also Les Miserables and we three oldest sisters go way back: we listened to the music upon pain of death, in secret with the fear of God and our parents looming before our eyes - we knew what they thought of rock musicals and those who listened to them and where they would go. Actually Big Jim did walk in on us - did he even knock when he entered the girls' room? - and heard Eponine in the middle of "On My Own" and demanded, "What in the world is this?!" We stuttered that after reading the book we were curious to hear musical and so procured the recording from the library, which was true enough - actually I read the book and then nightly would relate to Jewell and Melody on what had occurred in my reading since last night, but we were all three lovers of musicals and all interested in hearing this one. Anyway, Big Jim bought our explanation and listened himself for a moment before uttering with a shake of his head, "Ah, yes, the music of the world," and left. We didn't stop listening, though - we were hooked. Big Jim didn't actually tell us not to listen to the recording. Ah, yes, the old letter of the law. We'd listen to it on the way to homeschool choir when it was just us girls, and when we had to return the CD we'd sing it ourselves, every line, and despairing of ever being able to see it on stage in all its awesomeness- too good to be true!

Anyway, even though all three of us had since seen Les Miserables, we saw different productions (Jewell in Atlanta and Melody and me in London at different times), and when I found out a year ago that it was coming to Atlanta again, I was excited beyond words and instantly informed Jewell and Melody that we three were seeing it together this time, we owed it to ourselves and all that, and I at least thought I got enthusiastic responses.

Somehow, however, I ended up almost having to see it alone. Jewell ended up going with Big Jim after unwittingly giving him the idea that they go together when she mentioned the musical was coming into town again (he fancies himself a fan since he and Mama were the ones to accompany Jewell to see it a couple of years previously). So Jewell and her father went to see it the night before I did. And then Melody backed out because she couldn't afford it - or that's what she said, anyway, and so Lydia and I decided to go together since she had been planning on seeing herself. I, good sister that I am, offered to pay for a ticket for Melody as early birthday present but she said she had picked another day of massaging and so would pay for it herself.

Melody told me later on that she didn't even want to go, that she's not a fan of musicals anymore but she felt forced to spend money she didn't have so I wouldn't have to spend money on her, and she didn't even really want me there in her place because she knew we would end up fighting like always. Yeah, that attitude makes for a nice self-fulfilling prophecy. Particularly since she didn't bother to hide that she really didn't want to be with me or at the musical. I felt like a third wheel with Lydia and Melody devoting themselves to each other, wrapped up in each other's drama. They are best friends who live in the same city, go the same church - they see each other all the time. So that evening of course left me a bit disgruntled at Melody.

Jewell and I spent the next morning together before she had to go to work and actually had a nice time. She and Melody are not exactly getting along amazingly, either - she says she no longer tells Melody beforehand when she's going to be hanging around her coworkers after work or on off days because Melody, while not outright forbidding her, expresses her disapproval vehemently. In Melody's mind the church folk should be plenty company for Jewell. Now the house church that Melody goes to is actually the very same church my family went to when we lived in Atlanta right before we found out about Big Jim's incestuous behavior and the fact that both my parents approved of the church demonstrates what a close-minded little community - although in its defense my family was by FAR the most conservative there at the time - the females were allowed to were pants and our girlfriends had jobs (gasp!) and there were many fans of "worldly" music.

Still, the girls that I was closest to are still exactly where they were back when I was one of them - one or two of the daughters have gone to college but ALL of them who are still unmarried live with their parents, under the protection of their parents. The last time I talked to the girl I used to be closest to, she caught me up on what had been happening in her life - she had been considering going to Bible college in Colorado but her parents were reluctant to give their consent, but then the Lord took care of everything, of course, and dropped a job at a local crises center in her lap which she was passionate about. She proceeded to tell me inspiring success stories from the center and and went on one or two angry rants on Planned Parenthood with tears of indignation in her eyes. I seriously felt like slapping her and telling her to get a life of her own - she's 25!

Jewell in consternation told me she felt she had nothing in common with those girls except for their faith. They are all significantly older than Jewell, who will be 19 this July, but because she is in so many ways ahead of them in life, living on her own and supporting herself, those girls kind of have no real life advice to offer.

"And even their Christianity which you say you talk about with the girls, it's not real," I seethed to Jewell. "They genuinely believe they love Jesus more than anything and want their whole lives to be pleasing to Christ - but they haven't had a chance to figure out what THEY believe - not their parents, not their church. They strive to be such good Christians but to them that means nothing but having blind faith and not questioning a thing they were taught growing up!" Yeah, that's me on my soap box. But Jewell, she was right there with me (Jewell! I know!) - she had told me she didn't know how she herself felt about God and Christianity.

Anyway, Jewell went to work while she and I still had so much to discuss, and she asked if couldn't I stay another night, could she call Melody to see if that would be all right?

Well, Melody returned to the apartment after dark, sweaty from her day of massaging and demanding, scowling, why Jewell wanted me to stay another night?

"Never mind," said I coldly. "It's clear YOU don't want me here any longer than necessary. Take me to the shuttle and I will be out of your hair."

So she did. And our heated conversation continued. I told her she should lay off Jewell, that I was worried because of Jewell's depression. "She said earlier this week she just drove around after work until three in the morning because she just couldn't stand the thought of going back to the apartment. I know how disabling and scary depression can be..."

To which Melody replied that if Jewell had a problem she could bring it to Melody, herself, and it was none of my business.

This infuriated me all the more, but I was determined to press on until I had had my say. For some reason I kept hoping she would thoughtfully reconsider our conversation later on. Ha. I told her Jewell hated that Melody's only list of pre-approved friends were the church girls. "You of all people should know where she's coming from. You are the one girl living on her own and have been frustrated so many times with the church people who didn't respect your independence. Those girls are in their mid-20s and still living at home!"

"YOU'RE living at home," said Melody. That was so mean and completely caught me off guard. She knew as well as anybody how determined I was not to move to Montezuma after college. I was in the same boat as many other graduates in having no clue what was coming next, but there was no way in hell that I was moving back in with my parents - I had finally tasted independence! Again, she was aware of how much I had struggled since being forced to go home to Mama last summer, how low I had been. She knew.

And when I had recovered myself I told her as much. But she wasn't finished. She said that I use my Huntinton's disease to manipulate people, that I feel way too sorry for myself on account of my illness.

"What? What does that even mean? Why would you even say that?" I frantically searched my mind for any memory to make sense of this, and the only thing that came to me was a recent conversation in which Melody wanted to know how my relationship with Mama was and one thing I mentioned was how Mama thinks I'm wallowing in self-pity if ever I share something I'm going through or some aspect of Huntington's I haven't thought of previously - I never know what's going to trigger a surge of wistfulness. "But," I told Melody then, "the thing is, I really don't feel like I have more moments of self-pity than the average person would if they were in my situation. I know there would be those who handle this so much better, but certainly those who would be worse as well." Melody emphatically agreed with me and expressed outrage at me treatment.

So that was what I came up with. "Wow," I said to Melody, "that was a low blow. Why do you invite my confidence only to bite me in the ass later on?"

How can Melody, of all people, be so callous and insensitive about my Huntington's, she who will in just a few short years be exactly where I am? I felt something akin to the shock of discovering how one-sided my relationship has been with my mother. I told her that, reminded her how devastated I was when she tested positive, having told God for years that I would gladly take on the burden of this illness if only he spared my sister, how honestly happy I was that she was still presymptomatic even I couldn't be. What is it about me that causes me to spend an unhealthy and inordinate affection on my family members and to assume they felt similarly towards me? It must be some kind of Oldest Child Syndrome...

And yet the irony of the emotional distance between me and my individual family members is hardly lost on me. Necessarily I was close growing up to my siblings, best friends with Melody and maternally affectionate towards the younger set. Mama reveled in our love for each other, reminding us often that she, one of three kids, had never known what it was like to feel that way towards a brother or sister. When we eight kids and the parents would be out together, riding bikes by the river or playing hide-and-seek and an affected stranger would approach us to tell us how blessed they were by our sheer happiness, maybe even press a few bills into Mama's hand, Mama glowed at our testimony, our manifestation of what a truly joyful Christian family should look like. Oh, if only those people could see us now...

My whole life I have been schooled in the homeschooling mindset that it both unnatural and unhealthy for children to be primarily surrounded by their peers, in a school setting amongst children of the same age. Peer pressure was an evil to avoided at all costs. So the fact that the people in my life who care about and love me the most are my friends, my peers and NOT my family, still fills me with astonishment.

A Critique on who is now a Former Republican Candidate

I had already commenced writing this post when I heard that old Santorum finally called it quits – THAT is cause for much celebration (and relief since he stuck it out this long, this well?) - so this will be anti-climatical. Also my Microsoft Word was seized with a temperamental fit and not only refused to let me alter the document on which I writing this post but also wouldn't so much as allow me to copy and paste what I had already written. I was too lazy to rewrite the whole thing from scratch and it took me literally days to finally, after many failed experiments, outsmart the program. I thought about tossing the post altogether, but then this ignorance is hardly limited to Santorum and the Duggars.


I must indulge in a necessary political rant. What the hell is Santorum still doing around? He was the one taken the least seriously, the clown who should have gone out with the likes of Perry and Cain! (Of course, to be fair, the other candidates who have lasted are also quite ridiculous.) Every time I notice yet another positive comment about him on Facebook – and believe me, considering the vast majority of my friends are fundamental evangelical Christians, this occurs frequently – the logical/history major part of me is astonished and outraged at the amount of foolishness being so blatantly promoted.


And now, it seems, Rick Santorum has joined forces with the Quiverfull/patriarchal in the shape of the Duggar family, they of “19 Kids and Counting” fame. I detest the Duggars…. well, the parents, anyway. I feel intense pity for the poor kids: I know all too well the toxic beliefs the family subscribes to and the sapping effect it has in demanding perfection. Also the show seems rather boring to me. The one time I watched it when my roommate had it on (Hi, Abs!), the camera was trailing one of the boys into the kitchen so it could capture him making a sandwich. Fascinating stuff, that!


Anyway, I was over at Kathryn Joyce’s blog (I’m a avid fan of both her blog and book) and noticed that the Duggars have declared there support of Santorum and even “released a folksy video in support of Santorum: ‘19 Reasons & Counting to Vote for Rick Santorum,’” reasons one and two of which are the fact that the Santorums have been married for a significant amount of time and then that they have seven “blessings.” (Read the article here:
http://www.religiondispatches.org/archive/atheologies/5844/%E2%80%9Cone_of_us%E2%80%9D%3A_rick_santorum_and_the_politics_of_%28very_big%29_family/#comments ) Is it just me or are these irrelevant reasons to vote a guy into office? A lengthy marriage and a bevy of children sure don’t make a candidate more qualified to run a country - in fact, the men I know thus endowed would make particularly horrible political leaders! And I consider Santorum little better: his economic and foreign policies are naive at best and even his home state views his stint as senator as disastrous, but Jim Bob and Michelle interpret his many kids as being nothing less than an the endorsement of God, himself. So passionate are they about this that they are even on the campaign trail with Santorum, determined, as Jim Bob put it, “get the word out… that this is the family-values candidate.” Like the Duggars, Santorum condemns contraception altogether, as children are a blessing and having tons of them will outnumber the liberals and turn this nation from its wicked ways. “We need to be a hopeful country that wants more children,” Santorum declared.


This kind of thinking - the whole cramming of God down our throats via legislation - has no constitutional nor historical foundation and  gets me so frustrated, and yet, oh, so many Christians accept it. A bright young philosophy student from Liberty University, steeped in the wisdom of the magnanimous Jerry Falwell, actually told me that if we were faithful to God and voted in a president of high morals - namely, one will vow to do away with abortion and allow to fewest rights to gay citizens - God will reward our country and infuse that President with the wisdom to do an all-around good job. What the - ? And when I pointed out the obvious, telling him I felt there were other, larger issues at hand to be considered when voting for a President, he accused me of having my priorities screwed up, of caring about money more than life. 


If you know anything about early American history and the founding of the nation, which apparently is knowledge that many of my Facebook friends are lacking, it is so overwhelmingly obvious that the whole premise of Santorum’s campaign, that of forcing his own personal beliefs and morals on others, is oh, SO unconstitutional! I even went to a little Christian college where we naïve little freshman were told to our wide-eyed astonishment that everything about American history we’d been taught as homeschooled or Christian school students was incorrect. This is where I really am tempted to go into a full-blown argument to support this – I actually did this in my first draft, but the original point was somewhat overshadowed. Let me just say that that the intelligentsia of the colonial era were obviously, by their writings and actions, for the most part not Christians in the sense of what Americans normally think of today. They admired the prominent men of the European enlightenment which was in progress at the time who pursued logic over spirituality. Thomas Pain, the “Father of the American Revolution” himself, was a deist. Oh, this is really trying to turn into a lecture, which I really don’t want…


Okay, so most of the Fathers didn’t outright claim to be deists, but they denied aspects of Christianity like the divinity of Jesus or the legitimacy of the Bible or wrote their own Bibles (I’m looking at you, Thomas Jefferson!). Christianity really didn’t take over the nation until right around 1800, when the Second Great Awakening overtook us.


My point is that the Constitution was written for a secular country and America is NOT at theocracy. Christianity is never mentioned in the Constitution but freedom of ALL faiths is, which was actually a radical concept at the time. This is why I believe so strongly that gays should be allowed to marry, since the only possible way homosexuality could be conceived to be wrong is through the lens of religion and we are NOT a theocracy and  therefore should not favor one faith over another. If churches disagree with homosexuality and don’t want gays to darken their doors, that’s their choice, but there is supposed to be a separation of church and state. If Santorum wants to be a good conservative Catholic with his stellar "family values," good for him, but it’s wrong on so many levels for him to desire as President to force his morals on the rest of us who aren’t him, to have us act according to his ideas on reproduction, abortion, and homosexuals. He might and probably does have the best intentions for this country, but we're NOT his children to be told what is right and wrong. No wonder Satorum was overwhelmingly voted out his Senatorship in Pennsylvania. Forcing religion on the people never turns out well – need a lecture from the history major?

Fond memories of the Stepfather

I was recently, in a conversation with Georgia, referring to the snake in the Garden of Eden, and she looked perplexed, so I clarified, "Remember, when Adam and Eve lived in the Garden of Eden?"

Georgia rolled her eyes. "Becca, I don't have any idea what you're talking about."

I started laughing out of sheer astonishment. It's true that the family doesn't attend church down here in Montezuma and the last time they attended regularly she was quite small. I just can't help but wonder what Mama and Big Jim would have thought had they been able to foresee this, their youngest's ignorance in the matters of God and the Bible, back when George was born eight years ago. Wow, eight years ago we were still living in Columbus with Big Jim's parents, twelve people in impossibly small quarters, with no visible end in sight after having lived in those conditions for six years. I can't believe how many dreams have come true since then, but, oh, at what a steep price they have come!

Eight years ago the family spent an hour in the morning together, reading Psalms and praying and learning our hymn and verse of the week and then at least that much time in the evenings in Bible studies led by Big Jim - who, let me assure you, was NOT gifted in the area of teaching. He would drone on and on and follow rabbit trail after trail. One night a week was designated Testimony Night, another Prayer Night, and then we also "home churched" on Sunday mornings if we happened to be between churches - which was often. When I look back on those years, I feel like I spent most of my time back in Mama and Big Jim's room, that unfinished dark room with one mere tiny window set high in one wall, prison-like. Mama would be in her rocking chair, we kids lined up on the couch or sprawling on the bed or floor. At least I didn't sleep back there as well, like the boys and Georgia did. Not that they knew anything else - Clay was three when we moved down there and Josiah just one. They had no idea, those poor tow-headed boys, that there was anything unusual or unhealthy about our lifestyle.

I often think what a hey-day the Department of Family Services would have had had they stumbled upon that shoe box of a house on Ventura Drive. We of course, as a homeschool family, had grown up on the horror stories, the destruction the Department had wrought on other such innocent families, but in this case I wouldn't blame Family Services for being concerned about our situation. We were stacked in where ever there was room. I shared a tiny room with Melody and Jewell. Jim had his own room by virtue of being insane, but the poor three younger boys had to live in the same room as the parents and the baby. Big Jim had become inventive in the sleeping arrangements when the couch and floor and crib were occupied and designed a nifty little pallet on chains that swung down from the wall at night for Sam.

The reason we supposedly were living with Mama Jean and Daddy Al was for Big Jim to minister to his father, who had had a stroke and was wheelchair bound. Big Jim always violently denied accusations of mooching, but since he never held a single job that whole time and his mother supported all of us, one could be forgiven for suspecting as much. Big Jim’s line was that his mother was only reimbursing him for the job of taking care of his father. I always wondered why he was so enthusiastic about doing the right thing by his father when his first responsibility was to his wife and eight kids.

 

In defense of my newly-adopted beliefs:

Allow me to further expound upon my recently-adopted belief that the Bible is not inerrant. Thanks to my fundamental evangelical Christian upbringing, just about all my acquaintances today are of the opinion that the belief in the Bible as God’s exclusive and perfect Word is a vital part of being Christians; indeed, not long ago I would have dismissed without question those who engaged in such heretical views as “not TRUE Christians.” But honestly, where does God ever say you have to believe in the complete and exclusive authority of the Bible to get to heaven?

Like I said in my earlier post on this subject, the reason I returned to Christianity was because I came to the profound realization that one could in fact be a Christian and yet not be required to believe that the Bible is perfect, that moreover there is even quite a thriving community of “true Christians” who reject the Bible’s inerrancy.  I honestly don’t believe that I am less genuine in my faith or that God views me as less of a Christian on account of this newest development in my beliefs – especially since, I have already stated, this is the most real my faith has ever been to me as a person.

Furthermore, at the risk of sounding flippant, if I ever came to believe again that the Bible was NOT written by mere mortal men and thus much of its inspiration was lost in translation, I’m pretty sure I would have zero desire to remain a Christian - period. The angst-filled God of the Bible and particularly that of the Old Testament is, I hope, nothing but the ideas of the authors’ flawed interpretations of who God is. Seriously, if the Bible is in fact an accurate depiction of who God is, WHO would be okay worshipping such a God? His cruelty is much more bountiful than his love in the Old Testament. Since the Bible was written by all men and the culture at that time favored men far more than women, I’d rather believe that God was not blatantly sexist but that the writers’ perspectives were clouded by their times and cultures. Christians proclaim that God is not sexist and that it is only our human perception which might make it appear so, but I’m sorry, anyone who would favor masculinity in Israel the way the Bible portrays God does is sexist – God or not. I hate how God gets away with so much because he’s “God,” like sexism and genocide. It’s the epitome of irony to me how he can commit such “unchristian” behavior and yet come across to Christians as being perfect. What? How exactly does that work? If that God, the same who had those boys who made fun of Elisha mauled by bears, comes across as capricious and cruel, well, that is our lack of understanding, and who are we to question God? We need to accept it with blind faith.

Only God himself seems to encourage self-examination on our part, asking questions rather than trying to get rid of our doubts with blind faith.

I am perfectly aware that I could be accused of “creating God in my own image,” as the stepfather used to say, but, as I said, I am not an isolated case. There are plenty of intelligent, earnest Christians who do not accept the Bible’s perfection, who maintain that “the Word was God” and NOT exclusively to be found in the Bible. Please do not be “concerned” for me, as that is implying that you are right and I am wrong and on a heretical bent. God has not, I confess, bequeathed me with the absolute truth, but nor has he done so for you. Anyone who knows me knows that I am by nature an analytical person who does my research, so please, please, respect where I am at. 

The Decanonization of a Saint

Mama and I had an explosion of sorts a few days ago. I divulged at last to Mama my mounting internal bitterness at her suffocating methods of child-raising when I was living at home, and I experienced afresh just how badly my mother takes criticism.

My whole life Mama has been my rock, through my adoring eyes the one constant in my far from stable life, the person I have always loved most in the world - and now I abruptly find myself feeling so curiously lost. I have actually on more than one occasion called her a saint, as more than one in my acquaintance will attest. I proclaimed that my mother was the bravest person I knew, her with the tragic life and complete lack of self-pity.

The illusion has been shattered. How I have had myself convinced all these years that her affection for me was equal to mine for her, I have no idea. I have always, as far back as I can recall, strived to be worthy to be called my mother’s child and thus have made the effort to make life easier for her – while Melody and Jim were constantly having to be reminded to do their chores and quite racked up the number of spankings earned between them, I was the good girl and went out of my way to do more than my share of work. I have given up so much for her! Even before I was forced to move down here because of the manifestation of my Huntington’s, I told Mama I was moving back home when she initially told me about the divorce. And even last Mother’s Day I bought her a gift card for a weekend at a bed and breakfast in Asheville and told her with conviction that I wished I could afford a month on an island in Greece since that was what she deserved. (I know, cheesy, right?)

I even put off the conversation that we just now had a good couple of years because I was positive that she would be so affected by my pain that she had caused that it would add yet another burden to her heavy load. Oh, if only I had known…

Mama was hardly contrite when I faintly informed her that she had never said one word of regret about subjecting us, her children, to the scarring life of patriarchy and legalism. She told me that I was living in the past, this bringing up of my issues with my years in rank fundamentalism. I couldn’t believe my ears! I sat in shocked silence for a few seconds. I had waited so long to address my problems with my upbringing out of concern for HER and had dreaded the day, positive that would cause HER great pain – and she just dismissed it all in that phrase. She didn’t feel guilty, she went on, about her role in my upbringing since she had had the purest of intentions.

I gathered my thoughts and told her hotly that she had been more concerned about following through with her theories than she had about us children as individuals.

“Maybe I did,” Mama said, “but it was because of my love for you.” As if love justifies evil!

I asked her through my tears if she was at least going to apologize, and she offered an “I’m sorry! There, are you happy?” And then she walked away, crying angry tears, throwing over her should that she was such a horrible mother which also reeked of sarcasm.

And you know what? The sight of her tears and unhappiness that I had caused wrenched my heart within me. I had to stop myself from running after her and putting my comforting arms around her. How messed up is that? I felt ill with guilt for the rest of the day, even though I knew in my head that I had done nothing wrong and my grief had been legitimate. The anxiety came on, as it always does when I make Mama unhappy, and I soon had a headache.

I remember the first time I had an inkling that my obsession with my mother was neither normal nor healthy. Sometime when I was in college, Melody, who moonlights as a psychologist, gave me a book on personality types by Don Richard Riso with the page folded down on my type as she had diagnosed it: Type 6, or the Loyalist, and besides being blown away by how accurately the profile described me, I also found the section on the Loyalist’s relation to a parent figure enlightening. “As children, [loyalists] wanted the security of approval by their protective-figures, and felt anxious if they did not receive it… [loyalists] powerfully internalize their relationship with that person…They continue to play out in their lives their relationship with the person who held authority in their early childhood years. ”

And then my senior year the crack grew considerably in the veneer of my mental portrait of Mama. Melody, who had come up to Chattanooga for the weekend, told me that she was seeing a new therapist who said that The Affair, as Mama and Big Jim had always referred to the incestuous relationship between Melody and our stepfather was nothing but sexual abuse and emotional manipulation by Big Jim, and for me that suddenly made perfect sense. Mama had never even considered it was anything BUT an affair, and of course I never questioned her judgment, for which I am filled with remorse. But I remember starting to wonder why the hell would a mother with a monster of a husband like she had not even consider that, well, her teenage daughter might NOT be to blame for the incest. I feel like that would be my first thought were it my child! And I began to grow a bit angry that my mother had bought into a lifestyle where incest could happen so easily, promoting as it did virgin adult daughters living with their king-like fathers.

And then since I’ve been down here I have been noticing all the more Mama’s imperfections. I have stopped baring what’s on my heart to her, as she invariably maintains a disapproving silence – even when I’m chattering about what’s wrong with Santorum as a president or the inherent evils of the Quiverfull lifestyle. She has told me I am judgmental and expect the world to toe my line. And when I so much as mention my Huntington’s, she rebukes me for feeling sorry for myself – which I think quite unjust since I honestly feel like I’ve been doing better these last few months with the self-pity. I process through talking and sadly she is the only person down here I know. Like when I told her when I had had an unexpected moment of wistfulness when she and I were up in Atlanta at Melody and Jewell’s apartment and I suddenly realized that my time of independent living was over – Jewell and Georgia and the boys have their whole lives ahead of them, and two of my little sisters are living on their own and Clay is driving…it’s just the oddest sensation as the oldest, or at least the first to do all that, to reflect upon how helpless I am compared to my younger siblings. But when I told Mama what I was feeling, she told me that I should be GLAD that the kids are all moving on, taking steps, and that I was feeling sorry for myself.

Here’s the thing – she is the individual the least emphathetic to my troubles. She is my mother. She is supposed to be on my side. I have been so blessed to have the most concerned, loyal circle of supporters, but she, more than anyone, is supposed to be on my side.

It used to be something, if not enough, that my banishment in Montezuma would at least allow me to be a help, emotionally and otherwise, to my mother. Now I don’t even have that.

A link!

An interesting read...I'm not sure the author supports his argument in the best manner, but it DOES make you think, and I'm all about that!

http://www.elroy.com/ehr/abortion.html

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.