Words from The Editor
-- By Marty Burke
This was mostly supposed to be originally the August-September issue, but given the organizational changes - including a change of server - this has become the September - October issue., with some changes and many additions. First, I don't know how to thank Chris Polhill enough for all his time and effort in putting together and then maintaining InterNAF and this newsletter. He, and others, started our newest tradition - promoting Sept. 25th as International Ataxia Awareness Day (IAAD). As this is written, IAAD is still in the future, so if you'd like to know more go to http://www.internaf.org/ , which is our current server. One of the things that amaze me still are the liberating, universal, and free nature of the web. For example, I'm in Florida while the "old" server is in the UK. The "new" server might be anywhere in the world. It won't matter because it can be reached at the speed of light and in charge of it will be that proud French-Canadian, Michel Beaudet. All of us Ataxians owe Michel a HUGE debt of gratitude for both his past pioneering efforts and for volunteering to take over "the hot seat" from Chris.

The Medical Page used to be by Chris Polhill, but that task has been taken over by another French-Canadian, Fanny Chagnon.

Also, Shannon Conners (see page 3) is a new contributor, and I've included her IAAD letter.

We have a contribution by K.T. Henderson and regular columns by those excellent writers, Sharon Anderson and Rawnie Dunn.

Joe Villa is a regular columnist, but is still out recovering. I  know I speak for a lot of us in wishing him well and Godspeed!

This being late Summer (and humid here in the wilds of darkest Florida),  and last month being the 29th anniversary of my 29th birthday, and this being hurricane season here, we've been somewhat busy. Like most of my generation, I used to wonder what life would be like for me in the year 2000. I guarantee that Ataxia was never dreamt of. In fact, when I was first diagnosed, my first reaction was, "What the hell is Ataxia?" and "What the hell is PCD?" And that leads me back to my main point: 9/25,  IAAD, or International Ataxia Awareness Day. With many kudos to wonderful people like Chris Polhill, Michel Beaudet, and Rawnie Dunn, this is a special day for you to help make sure that more and more people, especially medical people, learn about the various Ataxias. Blue and White - especially in ribbons - seem  to be the favored colors. When I think about what life is like for me (and, I imagine, for many of us) the two words that first come up are "Surprise!" and "Astonishment". I am reminded of an old Yiddish proverb that came from the Shtetls (ghettoes) of Eastern Europe:"If you want to make G-d laugh,  just tell Him your plans!" IAAD, however, should only be a start. Finally, I want to take a moment to recognize the absolute heroism and courage of caregivers. We who have this disease don't have a choice, but they do. And since they're "normal", people like us are the only ones who (sometimes) see the full extent of what they do. Thanks.

There's even a humor column from me.

Some of you have noticed a few typos in my column now and then. To improve this I am now using a new set of rules for editing:

1. Verbs HAS to agree with their subjects.
2. Prepositions are not words to end sentences with.
3. And don't start a sentence with a conjunction.
4. It is wrong to ever split an infinitive.
5. Avoid cliches like the plague. (They're old hat)
6. Also, always avoid annoying alliteration.
7. Be more or less specific.
8. Parenthetical remarks (however relevant) are (usually) unnecessary.
9. Also too, never, ever use repetitive redundancies.
10. No sentence fragments.
11. Contractions aren't necessary and shouldn't be used.
12. Foreign words and phrases are not apropos.
13. Do not be redundant; do not use more words than necessary; it's highly superfluous.
14. One should NEVER generalise.
15. Comparisons are as bad as cliches.
16. Eschew ampersands & abbreviations, etc.
17. One-word sentences? Eliminate.
18. Analogies in writing are like feathers on a snake.
19. The passive voice is to be ignored.
20. Eliminate commas, that are, not necessary. Parenthetical words however should be enclosed in commas.
21. Never use a big word when a diminutive one would suffice.
22. Use words correctly, irregardless of how others use them.
23. Understatement is always the absolute best way to put forth earth shaking ideas.
24. Eliminate quotations. As Ralph Waldo Emerson said, "I hate quotations. Tell me what you know."
25. If you've heard it once, you've heard it a thousand times: Resist hyperbole; not one writer in a million can use it correctly.
26. Puns are for children, not groan readers.
27. Go around the barn at high noon to avoid colloquialisms.
28. Even IF a mixed metaphor sings, it should be derailed.
29. Who needs rhetorical questions?
30. Exaggeration is a billion times worse than understatement.

And the last one...

31. Proofread carefully to see if you any words out.
 

OR: Why Not Me? On one of the lists I am on, we are discussing the topic Why Me? Actually, the original question was phrased much better. The person who posed it quoted some new spiritual or philosophical leader she had read recently, who wondered aloud if being disabled might cause you to question or change your spiritual beliefs. The WhyMe? question is certainly one that is asked by everyone on the planet, without exception. It's one that causes you to think. Unless you happen to be one of those who believe that a father-figure in a white robe and long white beard directs every single burp and sneeze that happens. In which case, you undoubtedly answer, "If I'm disabled, it's because God wants me that way, and there's a purpose for it. Surely, goodness and mercy will come of it, and I will ask no questions forever. Amen." If you are one of those who believe that way, you might as well stop reading this. The concepts of being rewarded for living a righteous life, and being punished for some unnameable (and unknowable?) sin have been discussed. The newer, hipper version uses words like karma, and cosmic justice, and they all traipse around in brightly-colored costumes, but it's the same old philosophy, wearing new make-up: if you do evil, it will somehow come back to bite you in the ass. (The statement begs you to leap to the corollary: If something bites you in the ass, it's because you've done evil, and deserve it.) Most of us who were raised in Christian households swallowed this along with our daily bread and water. We have incorporated it into our worldview. Ah, but modern-day ethics say it is not politically correct to blame the victim. It's not cool to blame the victim. So we have to get rid of this damaging philosophy. Unfortunately, it's not as easy to get rid of as getting dogshit off your shoe. No. It's more like getting rid of a birthmark. And if I remember my college psychology right, deep down beliefs really affect your behavior, even if, on the surface, you have renounced them. Deep-down beliefs still affect you, even when the beliefs are no longer serviceable to you. In other words, all that stuff is still screwing up your life, whether you want to admit it or not. Blaming the victim is one of the most insidious things we have to fight against. So, I've decided to try to explain to myself what I believe about Why Me? And, because -I- can understand both parts of the dialogue when I talk to myself, but others don't, let's start this out like an interview.

Q: Do you believe in God?
A: I do believe in some kind of mystical force which I can't explain. Sort of a cosmic balance (or scales), something which is able to compensate and let life continue, even when mankind f---ks up. But it is not a benign, bearded gentleman who sees the fall of a sparrow and listens to the prayers of little girls kneeling at their bedsides. I'm more inclined to think of it as the lady in the 70's television commercial. The one who used to get really pissed. She used to cast thunderbolts, and say, "It's not NICE to fool with Mother Nature!" Like: okay, you've invented new medicine and better health care, and everyone is now going to live until they're 90 or 100? Hmmm. Well, then. How about a new plague? You can call it AIDS.

Q: You believe that mankind is being punished for hubris?
A: No, not really. I believe that the scales are being balanced. I don't think I can explain any better. I'm a little fuzzy on this point.

Q: Why do you think that some individuals are disabled, afflicted, suffering, while others are healthy? Do you think that some are getting what they deserve?
A: I don't believe in an afterlife. I don't believe that "God will punish", (or the corollary, that God will reward) because I don't believe in a personal kind of God. I'm trying very hard to fight against the ingrained notion that you inevitably call down on you the fate which you somehow deserve. (Ask me about this later, I've got more to say.) Shit happens. Awesome, wonderful things happen. Crazy, unexplainable, freaky things happen. It's the roll of the dice. So, okay, I got zapped. I can't take two steps without some kind of support. My seventy-five-year-old neighbor hikes up and down the steps to her apartment several times a day. There are times when I would much rather it be her than me, especially when she ignores me or has excuses why she can't come down for a glass of tea, or spend a moment chatting with me in the carport. Before I became disabled, she used to call me up all the time on the spur of the moment, to go have an ice cream, or just drive around and look at the tourists in the park. It's painful that she now ignores me, and even snubs me. Yeah, there are times when I wish she had been zapped instead of me. But the dice didn't fall that way. Que sera. (Sound of raspberry here.) Besides, it's all relative. Yes, I've got brain rot, and I'm watching my independence go down the toilet as I lose my skills. But I might have been hit by a bus and left with the mind of a turnip, or born a Jew in Europe during the '20's or '30's, or born today in a third-world country, subject to genital mutilation (because I'm female), starvation, rickets, malaria, jaundice, and you name it. I wasn't. So what have I got to complain about?

Q: So being disabled hasn't made you question your faith?
A: What faith? I already said that I don't believe in either a personal God, or an afterlife. I don't believe one should be good out of fear of future punishment. One should be good because it's the right thing to do. Just because you get zapped, doesn't mean you are a bad person. Neither does it mean you are some kind of Job, whom The Lord is Testing. It just means you got zapped.

Q: Are you saying that your disability has had no effect on your belief system?
A: Not at all. Actually, I think I'm a nicer person now that I'm disabled. At least, Ilike myself better. All my life, I felt like I was waiting for the other shoe to drop. And when it finally did, I felt like somebody said, "Well, it's about time! Now you can relax and enjoy the time you have left, instead of always feeling guilty and inadequate."

Q: It almost seems like you are saying that you needed this disability as a kind of lesson or period to reach a higher self. I'm curious about your "Now you can relax and enjoy the time you have left, instead of always feeling guilty and inadequate." Were the guilt and inadequacy derived from a spiritual belief?
A: I grew up on a quest trying to find a (Protestant Christian) church I could be happy with. In retrospect, knowing everything I do now, I am a recovering Catholic who never found the Catholic Church. (When I was four, I told my mother I wanted to be a nun. She told me that if I ever became a Catholic, she would disinherit me. I wasn't sure what that word meant, but I knew it must be a very bad thing.) When I was nine, I was diagnosed with Legg-somebodyorother-Perthes disease. Basically, it's juvenile arthritis of the hip ball-and-socket. Your hip rots and disintegrates. Only treatment is hip replacement. No cure. At the time, I was going with my family doctor to his Seventh Day Adventist church. I got prayed over. I got prayed over again a little later, when I started going with my best friend to her Southern Baptist Church. At the time, I honestly believed that prayer could heal. Because it was an invisible disease, and I was always excused from anything more vigorous than checkers, and because I got those grumblegrumblegrumble dirty looks from my classmates, I grew up feeling guilty. I ached to have a more visible condition. I didn't want to go play softball or volleyball. But I didn't have to. And I felt tremendously guilty for having an easy out. In junior high, two of my best friends were the only blind girl to go to our school, and the only girl with cerebral palsy. I felt that because both my parents disapproved of me ("Why aren't you more outgoing? Why don't you try to make yourself pretty? Why don't you lose weight? Why don't you want to learn to cook and clean? Why is your nose always stuck in a book? You'll go blind if you don't stop reading so much!") and my classmates disapproved of me ("She's wearing a Girl Scout uniform, can you believe it! What a freak!"), I had to find some area in which I could excell. Unfortunately, I was bright, but not brilliant. Hard-working, but not clever. Not pretty. Not outgoing. I got by, but I never excelled. At anything. And I felt tremendously guilty. For not making more of myself. By twelve or thirteen, I had figured out prayer was nothing more than an attempt to psych yourself up, but I was still hoping that somewhere, I could find absolution and forgiveness. I was still looking for some kind of church I could call home. So now, as an aging adult, I have the visible manifestation I needed as a child. I have an excuse. For not being perfect. I know, it's not logical. Who said I was logical?

Q: Let's get back to the issue of why people get sick. You believe disease is a response of Nature, trying to get things back in balance?
A: Partly. I mean, I think that a lot of the things people die of now, which seem like new diseases, aren't. But when people died because the animal they hoped to bring home for dinner brought them home instead, they didn't have a chance to develop obscure neurological diseases. Those wierd diseases which appeared in youth usually didn't get a chance to pass down through the reproductive line. If you were unlucky enough to be born alive, but damaged, your life span was incredibly short. Once upon a time, when something happened and you broke your spine, you died. You didn't live another thirty years as a quadriplegic. And, before organ transplants, your heart gave out, you died. None of this "emphysema after two successful heart and lung transplants." Of course, I also think mankind has to claim responsibility for bringing on himself a lot of health no-no's. Thalidomide. DES daughters. Love Canal. Chernobyl.

Q: Do you believe that this is all happening because civilization is moving too fast?
A: Of course. Now, ask me the next one.

Q: Do you think that we should go back to the way we did things in earlier times?
A: Give me a break. Outdoor toilets, horse-and-buggy transportation, and no refrigeration? Not on your life. But I think we need to do a better job with what we've got.

Q: How?
A: Ah, now, that's the question, isn't it?