posted
Truthfully, I'm amazed I got here. As some of you know, I signed up in 2002, posted for a few months, and then vanished before reappearing late last year. I tend to drift in and out and sometimes back into forums; maybe this one made an impression, because I did come back. It's certainly the only place I've been that I've met participants in person.
I'm going to be talking about a lot of bad things that have happened in my life, and I hope no one thinks this post is whining. I realize that for all the messed-up things that have happened to me, there are plenty of people who have it worse, and that good things happen too. But these events (along with my moves from house to house) have for one reason or another become the framework around which most of my memories are built. I refer to several of them frequently and I may as well make sure you know what I'm talking about.
I was born in 1975, my mother's first child. Despite being nearly a month late (and thus her largest too) the first impression people got of me was that I was a very large and healthy baby.
It wasn't true. Before long, my doctors realized that something was quite wrong. Specifically, my vocal cords did not move. They're supposed to open when you're breathing normally and close when you vocalize. Mine appeared frozen at the halfway mark. I was able to breathe, able to cry, but not to do either very well. Periodically I would turn blue. I was flown (quite possibly in freezing weather and/or rain; this was December) in a helicopter to a hospital in Louisville--to date, my only plane trip. There I was fitted with a tracheostomy--a tube in my throat through which I could breathe. I wore this until I was two years old; sometimes I think I have vague memories of it around the time it was taken out, but I can't be sure. Apparently, I had the adorable habit of using my double chin (I was very fat then) to close it off so that I could talk. Around the time I was two, doctors noticed that my vocal cords seemed to be fluttering slightly and the tube was removed. Scar revision surgery left only a faint line where it had been; it's still just barely visible if you look closely.
Sometime during this early period I also underwent a double hernia operation and was in the hospital frequently being checked up on. I do have definite memories, albeit quite faded by time, of the hospital in Louisville--the huge candies and cookies the doctors sometimes gave me, a small deaf boy with whom I played Legos, and a young, pretty black nurse named Susie. One of these visits was apparently quite unpleasant for some reason. I was anesthetized for this or that and when I woke, I had lost my appetite. The doctors gave me anything--even candy--to get me to eat anything at all. To this day, I remain a very picky eater.
Every day that I remember, my father would leave early in the morning for work. Then one morning when I was five he left carrying a suitcase. He told me that he no longer felt he could be a good father to me or my sister. This time he didn't come back. Strangely, I don't remember missing him. Ever. The easy explanation is that my mother's claims that he beat myself and my sister are true, but I have no memories of that either--only of vague fears of him that could as easily derive from her tales. He himself denied everything later, and because every member of my family and all the family friends are partisan to one side or the other, I have no easy way of achieving any kind of objective account.
For a year or so we moved in with my grandparents, a time that seems to loom much longer in my memories. Then my mother married again, to my stepfather. To my way of thinking, he was not so very different from my father--both were stubborn, angry men who liked to shout. Unfortunately this did not endear them to each other in the least. The only occasion I recall one showing the slightest sign of making peace, he was in violation of a court order not to see the other, who then exploited that for all it was worth. My two sets of parents spent almost a decade fighting each other over custody and visitation for myself and my sister; by the end of that time I would gladly have lived with either one or neither if they would just shut up. Neither was entirely innocent in the matter, and probably neither as guilty as the other side painted them. I think my most macabre memory of this period was of my father's father, shortly before I was able to stop visiting. My early memories of him are of a kind and gentle, albeit coarse, fellow who brought me money stuffed into his cigar cans, one or two of which I still have somewhere. Almost my last memory of him is of his threat to murder my mother and stepfather in a driveby shooting, and that if they put him in jail he would simply stop taking his heart medication and die. He was not worried about death, he said; he had seen where he was going during a previous hospital stay and there was nothing he could do about it. That certainly didn't sound like he expected heaven. Not long thereafter--perhaps fortunately, unpleasant as the thought is--Grandpa died of a massive aneurysm on his heart. When I was finally allowed to stop visitation I did; I also retreated as much as possible into my room. I didn't want to see my mother and stepfather anymore than I wanted to see my father and stepmother, and that was the closest I could get.
Perhaps one of the worst incidents during the visitation period happened when I was eleven or twelve. As I said, I was a picky eater, and my metabolism is very fast, which is not a good combination. I appeared, and perhaps was, at least a little malnourished and rather scrawny. Embarrassed by my appearance, I wore loose-fitting clothes in an attempt to conceal my wimpiness. As a result, it was my father who first noticed the abnormal curvature of my back. He immediately seized on this, and on my skinniness, as evidence of neglect, and for the first time I can recall he launched a counterattack on my mother, aiming for custody himself. Perhaps afraid of the cost involved, my mother first took me to a doctor who suggested early cases of scoliosis could be kept minor by special posture-enhancing exercises. Perhaps he was a quack, as my father claimed; perhaps my condition was simply too far advanced for his prescription to work; or perhaps I just didn't follow it closely enough, as any time I took a trip I tended to neglect my exercises for lack of a proper place. In the end, I was recommended for a brace anyway.
But when I went to Vanderbilt for examination, Dr. Green opined that there was no way I could be put in a brace; I would be unable to breathe. The reason my posture was bad was that I was struggling to open my airway enough to fill my lungs. That was, I think, the winter that I had grown half a foot in three months, and my vocal cords had grown accordingly, blocking off even more of my trachea. Treatments to set them moving were still in the early experimental stages, and I opted for the most expensive but effective procedure--to have them burned away with a laser. Not yet thirteen, I realized my own mortality when most kids are forgetting whatever knowledge of it they had; I was finally baptized just before my birthday. The surgery went well and I came home sometime later with a tube in my throat once more, allowing me to breathe while my larynx healed from a condition my doctors described as being "like raw meat". For quite a while--perhaps a month--I was unable to talk, which was a little traumatic in itself. I was never very outgoing, but I still needed things, and I still sometimes wanted to rant about some interesting subject (usually something no one around me comprehended). Nonetheless, I recovered quickly in what Dr. Ossoff (also known for performing surgery on many singers) called a textbook case. I finished that school year at home with a tutor and returned the next with a deep voice reminiscent of Freddy Krueger, who was still all the rage at the time. Before I had the tube removed, visits with my father resumed; it was during this period that my stepfather, attempting to help with some of the bulky equipment I needed to keep the air moist, violated the court order. My father ranted about his misbehavior and how he was going to sue his ass all the way home to Paducah. Scar revision surgery was never done on the hole where my tube had been; it's still plainly visible just below the faint line of the other.
By the time I actually got into a brace, my mandatory visitation was drawing to a close, if not actually over. Maybe it was too late by then, or maybe it would never have worked. My spine continued to bend, and around fifteen, I believe, I was back at Vanderbilt with Dr. Green preparing to have it fused with bone material taken from my hip. Members of my church generously donated blood for the lengthy and slightly dangerous procedure; as it turned out I didn't need it, succeeding in producing five pints of my own in five weeks. This was, perhaps, the most painful of my surgeries. I was on morphine for quite a while, then Demerol after I complained that the morphine made me itch all over. For months, just getting out of bed was a chore; the brace had kept my back stiff, but I didn't wear it all the time. Now I struggled to do all kinds of ordinary things such as crawl under the bed looking for my shoes; I'm still a little claustrophobic from being unable to squirm in tight spaces as I once could. Eventually, I did manage to adjust, and I can now spring out of bed easily--if I'm awake enough before getting up, anyway. The metal rods that held my back steady while it healed are still in there, however, and a thin faint scar runs up most of the length of my spine.
Between this operation and 2000 are what I call the good years: the second part of high school, Governor's Scholars at Northern Kentucky University, four years at Harding and one and a half at Murray State. There was one other traumatic event during my second year at Harding, psychological rather than physical, but Yasaman deserves her own landmark post. Perhaps I'll make it sooner after this one than would be normal. Or perhaps not. I still suffer from that one from time to time, and I haven't spoken directly to anyone about her in years. I'll have to think on it.
Then one day following one of my frequent Ichthyology field trips I discovered that the sunlight seemed painfully bright. The next day everything seemed covered in fog that rapidly became denser. My eyes seemed slightly sore and I saw the school nurse, who diagnosed me with a simple case of pinkeye--not too odd in someone with contacts. I used the cream liberally, but only one eye cleared up despite my continued use for twice the time it was prescribed for. Unfortunately, that eye was my bad one, seriously myopic. Then I went to the offices at the local hospital, where I was told that the infection was either herpes (what?!?) or acanthamoeba, and that by the textbooks I should have come in screaming and clutching my eye if it was the latter. The worst pain was the sinus headaches, and so I was started on antiviral drugs. Unable to look at a computer screen, easily see print, or go out during the day without sunglasses, I was unable to finish my classes. Meanwhile the infection faded in and out seemingly at random until, finally, the doctor began to worry that he might have been wrong. For the first time in years I was back at Vanderbilt, where the doctors were unable to get a good image of my eye due to a slight nystagmus. In order to make a proper diagnosis, they were forced to take a biopsy, slicing through the thin outer layer of my cornea and taking a sample of the inner layer. Once the drugs wore off...well, that pain was almost as bad as my back had been when I went home, perhaps worse, since there was no real relief.
Still on the drugs I attempted to get back into school, but due to a paperwork error while I was distracted by my illness my student loan had not gone through. Unable to pay for that semester and unable to get a new loan without being admitted--which I could not without paying--I was forced out despite my attempts to cut a deal. Suspecting something like that would happen and worried that I would be unable to find work in my hometown, I had taken the slim chance and moved into the dorms. When I was forced out, instead of going home I moved into the basement of the student center until I could get the apartment I now have. I was still taking the drops for my infection when I obtained a job cleaning busses for the Taylors; when I left I had been cured, and had my first car and my first up-to-date computer. Unfortunately I was broke again within three months. The recession was still in full swing, and despite combing the streets seeking any work I could find, nothing appeared. Just before being forced to go home to my parents in humiliation, I managed to secure a job at Cracker Barrel. For all practical purposes this is where I stand now--a little precarious financially, but all in all, I consider this a victory. I'm still here, and if I can beat all this, one day I will get beyond my petty financial difficulties. I guarantee it.
With that I'd like to announce that Maccabeus will be leaving the forums. No, really...I am formally changing my nick to Mabus, for a variety of reasons which can be provided on request. This is Maccabeus the Mad....signing off.
Posts: 1041 | Registered: Feb 2002
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posted
WOW. How amazing! I was all set to find out that you can't talk or see, or something. I can't believe that you are doing as well as you are!
I have to tell you, I really love Cracker Barrel. Sawmill Gravy and biscuits kick butt. And I'm really glad you're not going anywhere. Posts: 6367 | Registered: Aug 2003
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posted
Wow! That is a truly incredible story. Thank you for sharing it. You are a true survivor. I don't know if I'd have the emotional strength to deal with everything you've gone through.
Posts: 4569 | Registered: Dec 2003
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posted
I'm not usually eloquent in response to landmark posts... I'm amazed by your independence and ability to keep going though it seems like everything under the sun has been thrown at you.
posted
Wow, it is so amazing to me how some people have to suffer through so many health problems and physical discomfort while others hardly have to deal with it at all. Sorry you had to go through all that, but hopefully something positive came to you from it.
I was born in Kentucky myself, but that is neither here nor there since my mother had 6 kids born in different states. I do, however, enjoy Bluegrass music and horses, so maybe it is in my blood. *loves Allison Krauss*
posted
I haven't time to read your all landmark just now, but I will ASAP, and waiting for it, congratulations ! Posts: 3526 | Registered: Oct 2001
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posted
Well...it looks like the name change will take a while; I can't get at Hotmail to get my new password! Rather than let things linger, I may as well use my old name for the moment.
To put it simply, "Maccabeus" derives from a scheme of history I put together for silly reasons and which is itself silly.
Moreover, "Maccabeus" reminds me of those early days when I first got online, naively and arrogantly believing in the power of the internet. It really had not been that long since I had read Ender's Game, and for whatever crazy reason I believed a Demosthenes-Locke ploy could be successful (I wasn't exactly plotting to take over the world, just change it; something along those crazed lines)--and I didn't even have someone to write the other person; I was going to do it myself.
Lastly, because "Maccabeus" is a name from Jewish history as recorded in the Apocrypha, people have a tendency to assume I am either Jewish or Catholic. Neither is true, and in some contexts (such as discussion about the Middle East) such a belief about me can cause problems.
Posts: 1041 | Registered: Feb 2002
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posted
Wow. Thank you for sharing so much of yourself with us! And I echo eslaine.
As far as scoliosis exercises go, I was put on those too. It was then standard practice at Kaiser. (I'm a year older than you are, so it would have been about the same time.) I hated them, and sometimes just skipped the things. A few years after they decided I had stopped growing and didn't need either the exercises or the twice-yearly x-rays any longer (my curvature never got bad enough for a brace or surgery, thank God), I found out that they no longer recommended exercises, since they didn't seem to do much.
A web search shows that exercises as a scoliosis treatment are highly controversial, with some claiming they make a huge difference, and some claiming they do nothing. Posts: 32919 | Registered: Mar 2003
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quote:With that I'd like to announce that Maccabeus will be leaving the forums.
*thwap*
*glare*
-o-
That was a great post. I guess I've always been lucky when it comes to my health. And though my parents went through an ugly divorce, they had the good grace to wait until I was grown up to do it. :-p But your post really made me feel like I understood what you had been through . . . thanks for that perspective.
You joined around the same time I did, and I don't remember any "bad, old days," but if you want a new name, I reckon that's cool. Though I can't imagine why anybody would want to post under any name but their first one.
posted
Icarus, the "bad old days" were long before I showed up at Hatrack. I'm not even sure there was a Hatrack in 1995. They were on ISCA BBS.
Posts: 1114 | Registered: Mar 2004
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posted
Thank you for sharing you're experiences. You are amazing and certainly don't sound like you're whining. I don't many people who've had it worse. The fact that you seem positive about the future and haven't let your trials drag you down are very impressive.
Thank you again for sharing - it always helps me to look at my own life in a more positive way when I read these landmark posts.
Posts: 394 | Registered: Feb 2004
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That's pretty incredible, Macca... or Mabus, I guess, as I should start calling you.
I've very much enjoyed your presence on Hatrack these past 1000 posts... it's been fun! The forums, the chatrooms, the scrabble... it doesn't get much better. (((((Mabus))))) Here's to another 1000 posts! *clinks glass*
Posts: 7877 | Registered: Feb 2003
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posted
You're already locked in my mind as Maccabeus. It's too late to change on me now, sorry. Just think, now you can have another of those nicknames that make newbies wonder who we're talking to while at the same time I get to completely disregard your wishes!
*sigh*
Is there anything finer?
Thanks for sharing, it really is quite the story. You're quite the fighter and, for some reason, I always pictured you as being older.
Anyway, here's to another kilopost and I hope for happier, steadier times in your future!
posted
Holy cow. That's some amazing stuff. You're a heck of a person. Glad to have you around, on the forum and on the planet. Keep it up. Posts: 2804 | Registered: May 2003
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posted
Whether you're Mac or Mab, you're still one heck of a guy. If adversity is where our character is forged, then I now have a better understanding of where this genuine, fine person came from.
Macc, I've always thought your posts were among the most insightful, and honestly, I thought until recently that you must be in your 40s or thereabouts. After reading this, I'm seeing how someone of your age could have such wisdom... you've earned every bit of it.
I sure hope the college situation straightens itself out and now I'm understanding a bit more about the other post where you explained about the odd older fellow who was helping you pay for college. He isn't taking pity on you... he's definitely seen how incredible you are and wants to help you bring it to a world that desperately needs folks like you. Smart fellow that old guy is...
Posts: 2848 | Registered: Feb 2003
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Your struggles are the kind that make me want to quit whining about my own. I admire your strength and the hope that is so evident. I'm glad your sticking around, whatever name you use.
Posts: 1090 | Registered: Oct 2003
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You wrote: " due to a paperwork error while I was distracted by my illness my student loan had not gone through. Unable to pay for that semester and unable to get a new loan without being admitted--which I could not without paying--I was forced out"
Argh. This same thing happened to my husband. Each office kept asking for paperwork from the other office, until finally he got a letter saying he was disenrolled. He was so close, within a semester, and after years of struggle, he just gave up on college. I am glad you are pushing on through.
I'm so glad I got to meet you at WenchCon. Your story is amazing, and I hope something exciting (in the GOOD way) is lurking 'round the corner for you this Spring. Who knows, maybe the job market will get better.
Posts: 3141 | Registered: Apr 2000
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I found the name change a bit like a caterpillar undergoing metamorphosis into a butterfly, but then again, I have had no Mountain Dew for a few weeks since I gave it up for Lent. This might explain the over-rationalization I place on most things lately...
Remember: You've got a friend in Pennsylvania. Your post was sincere and heart-wrenching. I detected no whining at all. I too encourage you to plug in another 1000 so we can get to know you even better!
Posts: 1870 | Registered: Mar 2003
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