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.
