In the past few days, I’ve encountered two completely diverse situations that speak to the lack of commonality of this enormous, diverse community and how we perceive ourselves within that loose fellowship.

The first came up during my talk with a wonderful novelist. She sold  her first book to an online/POD publisher and subsequently joined its author community via blogging and blog commenting. Problem is, she feels isolated within this group, which she specifically joined to enjoy that wonderful sense of connection we all seek with our fellow writers and authors. Their writing goals and process seem so  different from hers.  The only common ground she can find is their mutual affection for the publisher and desire to get their stories down in writing.

I noticed the second situation in a LinkedIn group discussion as I read over the various answers to a question about the writing industry and thought about my own perspective on the topic. I admit it: I’m ever the optimist. I look at a problem and, like a Ferengi, I suppose, see opportunities and possibilities, not gloom and doom. Yes, the writing and book worlds have changed, enormously. But they haven’t ceased to exist–they’ve merely become different, and I don’t think the answer to “better pay for better writing” is in legislation, but in our individual selves.

So what is the point of this blog? I guess just to point out that writers come in all flavors. That our vast conglomerate of folk never has been and never will be a one-size-fits-all. Writing is so darn individualistic, it cannot and should never try to be stuffed into round holes. We are the last, great independents in a world hellbent on conformity.

Few will remember Gary Cooper or Alice Cooper in 100 years, but they’ll still know Dickens, Austin, and Rowling. And maybe, just maybe, you and me.

And, with nods to Dr. Who, Agatha Christie.

First, I detoxed. A lot. Got off wheat and, in fact, ALL grains for 18 months, twice. I did liver detoxes, colon detoxes, gallbladder detoxes, kidney and bladder detoxes. I cooked with coconut oil to help clear the plaque in my arteries. I took cayenne to strengthen my vascular system. I write all this in the past tense, but I still eat minimal grains (especially wheat), minimal sugar (including fruit), cook with coconut oil, take cayenne (in capsules) every day, and make sure my digestive track empties fully and easily.

Second, I built up. Lots of carrot juice. Lots of broccoli and spinach. Also lots of beets, but that’s mostly because I love beets (fresh cooked, not from a can). Bovine Colostrum. In my case, I made sure I had beef–not hamburger–a couple times a week. Chicken and pork never helped. Shrimp (shellfish) did. Catfish didn’t. Neither did cod, but that’s okay because while I love fish & chips, my body doesn’t appreciate the breading.

Third, I avoided chemicals in food, which means, yeah, I read labels. No, I don’t love to cook and I didn’t go strictly organic. Did try going vegetarian for two years; even went vegan for eight months. Both were BIG mistakes. People with MS need meat. I think I danced around the house for hours the day we discovered that! If nothing else, I made sure I had steak and eggs at least once a week. Protein, protein, protein–from beef–gave me strength. The powders and drinks and what-have-you were useless for me. I countered the cholesterol nonsense (yeah, utter nonsense) with the detoxes and coconut oil and cayenne.

Fourth, I refused–purposely, fervently, and with malice of forethought–to think of myself as fragile. That’s a trap. I never accepted my condition as permanent. I never thought “Why me?” I never let myself slide into victim-hood, never, never, never. I never stopped working, even when I could only work for two or three hours a day–not at a time, a day. I learned to plant my feet so I was steadier. I learned to lean so I didn’t feel like I had to fall. I learned to give my body what it needed at the moment, always reminding it that this condition was not going to stand. I was coming back. I learned to let other people’s problems be theirs, not mine, which reduced a tremendous amount of stress. I learned to release the anger and pain I harbored from my childhood, from my family, from my clients, from my circumstances. This part was sinisterly tough to accept at first, but was an absolute godsend afterwards. I forgave and released and moved on.

Fifth–and this part came only about a decade ago–I drank Noni juice. Drank it for two and a half years before I discovered noni capsules and switched to those. Noni changed my life. Changed my life. I don’t know that it would have been so effective if I hadn’t set my body up for it. (I used to say I was the healthiest disabled person anyone had ever seen.) Noni truncated the disability. I could work for full days. I could tolerate hot weather. My Reynaud’s problems diminished. My night vision improved. My MS symptoms became manageable. For me, Noni was a miracle.

Sixth, after years of all of the above, I started taking an oral chelation provided by one of my clients. It took probably 12-18 months to really make a difference, although I started feeling stronger about 3-4 months into the regimen. My night vision not only came back, my normal vision improved so much I no longer wear bifocals. My balance improved. The bodily functions I had to constantly monitor regulated. Eventually, the MS was pushed back so far, I barely acknowledged it as I went about my daily life.

Finally, I released it. My husband died, and I psychically said, “I was diagnosed with this damn thing the year we met. If you have to leave, take it with you.” He’d passed on by then, but he was still actively hanging around the house. About six months later, I got a terrible, terrible case of the flu. The flu. I hadn’t had a cold or flu last for more than a few hours for decades; the MS, which was virulently killing off the myelin sheath in my body, was not about to let some outside bug exist in my system. I was sick for over a week. A few weeks later, I realized one day that I wasn’t watching my bladder. My vision was fine, and I hadn’t had an optic migraine all summer. My balance was fine. I could hold a cup or a glass or a plate and not be concerned that I might drop it. I felt everything in my body, everywhere–no dead areas, no numbness. No stasis across my back. No problem with heat whatsoever. I felt it gone. I can FEEL it not here anymore.

Sounds crazy, eh? But I don’t have MS anymore. My Reynaud’s is totally under control. My skin is clear, my eyes have no more discolorations, my tongue is pink, rounded, and full, not flat. I have energy. I sleep well no matter what the weather. I can take deep breaths without resistance.

Have I cured everything? Naw. The thoracic outlet compression that took away my career as a professional drummer remains, as does the mitral valve prolapse and slight scoliosis. All structural stuff that doesn’t affect me if I don’t try to pretend I can now go out and be the athlete I never was. Because I hit my head so many times starting so early in my life, I deal with sporadic memory problems. My husband knew how to work around it, but it drives my kids nuts.

Oh, well.

That’s the whole story, soup to nuts. If I’ve forgotten anything … well, I do tend to forget things now and then. There’s an actual name for it: intermittent amnesia. I did another one of those house dances the day I finally found it.

It had only taken me 15 years to remember to look it up.

I still had to deal with some lingering problems, of course. My balance didn’t. The stasis stayed. The headaches changed their visitation schedule at will. My night vision came and went, as if it was family (fish and family stink after three days, my mother-in-law always reminded me. My night vision must have had the same mother-in-law). And I took on a new wrinkle: optic migraines. Very pretty albeit completely distracting while they’re happening, usually 20-25 minutes, after which the headache made its regularly scheduled appearance.

Tom, Bera, and I tried to look at the creep that had invaded my systems from different angles, and made some logical deductions. We conceptualized MS as akin to an electrical problem. My impulses weren’t making it through my wires. Why? It all came down to two basic problems: inflammation and spasm.

To reduce inflammation, I relied on arnica. I used both the homeopathic tablets (Hyland or Borion, didn’t matter which) and the topical gel. I prefer Roberts Research Laboratories Arnica Gel; it’s excellent, absorbs quickly, and smells nice. If things got severe, I could take more tablets and reapply every fifteen minutes. If that didn’t work, I defaulted to some left-over naproxen. But naproxen isn’t good for my internal organs (I forget which one it affects—liver? Kidneys? Gallbladder? One of those. Maybe the stomach. Whatever), so I stalled on taking it except in extreme instances.

BTW: my mother used arnica gel on her leg after her knee-replacement surgery. It always helped bring down the swelling, which relieved the pain. It only didn’t help when she didn’t use it. I have found this to be true across the board: if you don’t rub it in (or dissolve it under your tongue, depending on which form you’re using), it doesn’t work at all. Not even a little. Doesn’t sound reasonable, does it? But I’ve done this experiment over and over, and the result is always the same: use it, it helps. Don’t use it, it doesn’t. Amazing, eh?

Bach Rescue Remedy took care of the spasms probably 97.86% of the time. Three dropperfuls under the tongue repeated as often as necessary, which was usually not more than two or three times per flare-up. Again, in extreme, incorrigible episodes, I popped a left-over robaxin. I’m sure my supply of both allopathic drugs were long past their expiration dates, but they still worked on those rare occasions when the arnica and Rescue Remedy didn’t pull it off.

When I got too fatigued, my husband ran out and bought potato chips. Not the healthy baked or vegetable kind. The old-fashioned, greasy, salty kind. The salt-grease combination make me feel better, stronger, and less tired. Why? Because…. That’s it. Because. It worked. I didn’t think I needed to know why it worked.

BTW: yogurt—not so much. Yogurt, which was suppose to make me feel better and feed the healthy bacteria in my gut just made me queasy. Go figure. Bera says my body is backwards: everything I did according to Hoyle didn’t work. Everything I did that shouldn’t help, did. Tom says some doctor once told me I was a drug reactor. I always took his word for that, because I don’t remember it. (Were he here physically right now, he’d roll his eyes, heave a massive sigh, and walk away, so just take that as given.)

Between the Noni, arnica, and Rescue Remedy to combat the MS and the cayenne capsules to keep the Reynaud’s at bay, I did pretty well for a couple of years. I certainly handled my more debilitating symptoms better than most of the other people I knew with MS. It felt like I’d pushed the interloper back to remitting/relapsing with just a few always-present exceptions:  the visual distortions and limitations, the lack of balance, the tenuous sphincter compromise, and blah, blah, blah. BUT—if I lived carefully, which I mostly did (mostly), I’d get along for the rest of my life without any canes, wheelchairs, or allopathic interventions. That’s what I was aiming for, that’s what I got.

In early 2003, a former client sent me a new client: wacky, wonderful Ron. Wacky, wonderful Ron lived on the other side of the country from me, had a great story to tell, and was part owner of a now-defunct supplement company that owned the patent on a Superior Antioxidant Oral Chelation Formula he said I just had to try. Besides a long list of vitamins and minerals, it had a proprietary blend of minerals and nutraceuticals (don’t ya just love that new made-up word?) that would change my life.

Yeah, right.

But it was free, and as Arthur Godfrey used to say, for free, you take. So I took. When the first bottle showed up I sent a copy of the label to Bera, who said, “Go ahead. It won’t hurt you.”

Oh, goody, because I just loved taking handfuls of supplements. But I’m diligent if nothing else, so I followed the recommended build-up program: one mornings and evenings for a week, then two twice a day, etc., until I reached maintenance of two in the morning and three at night. It became part of my daily regimen, just another couple, three tablets in my cup of pills that, of course, included the cayenne and Noni capsules, a Omega-3 gel cap to improve brain function, and an Aloelax capsule for…obvious reasons.

It’s a girl thing.

Ron kept sending me bottles of Chelation, I so kept taking it. After a couple of years, I noticed my night vision getting better. A few years later, I noticed I felt stronger—a strange thing to feel I admit, but remember I used to be a drummer: I knew what it felt like to feel strong.

By the time Tom’s mother died in May 2005 (the day after my birthday because I asked her to please, don’t die on my birthday, I’ve already lost a cat on my birthday and if she died on the 27^th, I would never be able to eat chocolate cake again, so God bless her, she waited until the next morning), I felt pretty darn strong. Vigorous, even—remember “The lusty month of May”? From Camelot? Geez, now I feel old—and able to do something about it, too. Eighteen months later, I’d had the pedal to the metal so hard for so long that we were, for the first time in our marriage, completely out of debt.

It was an occasion, I tell you. A veritable triumph for a disabled ghostwriter who, although she made a lot of money per annum, was married to a musician, which thus negated most if not all gains tax season after tax season. For the first time since we’d walked up the steps of Chicago City Hall, thanks to having more vigor than I’d ever had before in life (Noni + Chelation equaled energy⁴), the credit card debts were gone, the financing debts were gone, and the IRS had Offer-and-Compromised out.

It didn’t last, of course, but that wasn’t anyone’s fault. Sometimes shit happens. In October 2006, stuff that had nothing whatsoever to do with me or my squatter-infested body came along to strain our finances, our marriage, and our life in general.

It all ended as badly as humanly possible, but thanks to Tom’s and my connection via the zero point field, I shed the last vestiges of MS.

Which is a whole ‘nother story.

Bera, who had been recommending this protocol and that and charting (I now find out) my stunning lack of progress throughout the years, had also been insisting I take Noni juice for about, oh, a long time. That winter, she worked out a deal with the South Pacific Trading Company for me to buy it at a greatly reduced cost so I would finally (Please! Please! I’m begging you!) give Noni a try.

Starting sometime in early February, 2001, I drank three ounces of Noni, a juice that tastes different to everyone, every morning. Bera wanted me to drink it twice a day, but while it tasted like parmesan cheese to my landlady, to me it tasted like the bottom of a sewer. This was not good-tasting stuff. I downed it from a glass in my left hand followed immediately with an eight-ounce glass of water from my right. Blech, blech, pftui, ew, blech.

In July, 2001, I drove Bera and husband Ron’s 10-wheeler moving van from Orange, California to Bernalillo, New Mexico, which is just about three tumbleweeds past Albuquerque, on the left.

In the heat.

With night vision.

And energy.

ENERGY.

Real, honest-to-God energy, the kind I hadn’t had since…well, never. I’d never had so much energy, not at any previous stage in my life.

When I came home and went back to work, I discovered that what used to take three months I could now accomplish in three or four weeks. Weeks!

Would it have been as effective if I hadn’t readied my system with all those supplements and detoxes beforehand, if I didn’t do a liver cleanse three or four times a year, if I didn’t lay off grains (ALL grains) as much as possible and chomp down broccoli like it was the latest blend of nectar and ambrosia? Maybe, maybe not—how would I know? I can’t even remember all the things I swallowed, rubbed in, and slurped up that didn’t worked. But the Noni did. I felt better than I had in decades. Noni juice was a miracle!

But…not a cure.

The cure, the two icing-on-the-cake elements that dissipated multiple sclerosis so entirely that it could not sustain itself in my body and had to slink away whimpering like the pathetic, slimey  maggot it is, was a one-two punch from my wacky but loveable client in Mississippi and the zero point field.

The zero point field? The one via which Tom and I were/are psychically connected?

Yeah, that one.

My anxiety was mobilized. I complied. He put me on a diet of numerous whole grains and familiar and exotic vegetables cooked no more than three minutes. No meat. No fruit. No sugar or chocolate. I, in my adorable innocence, thought, hey, a month or so of this and I’ll get rid of those five pounds I want to lose, too.

However many months later I stopped—I want to say eight but I suspect I didn’t make it that long; I certainly didn’t make it very long without chocolate, what, are you kidding?—I was THIRTY-FIVE POUNDS HEAVIER and felt worse than ever before. I’d never been that heavy in my life. And while I’d struggled, as many women do, with monthly constipation, my bowels had now ground to a complete stop.

Years later, we figured out that my body doesn’t process whole grains; it stores them. I take Whole Grain Cherrios as a personal affront. My corporeal mass doesn’t like soy, either, but that didn’t stop me from forcing tofu dinners on my family. I can’t even stand the smell of miso soup at this point.

It was during this period that I noticed Tom was taking his daughter “out for a ride” a lot more than usual, with the two of the coming home smelling of (now defunct) Naugle burgers or MacDonald’s fries.

Macrobiotics was no good for any of us.

I went back to eating like a person. Didn’t lose any weight, and didn’t come back to where I’d been before I met Dr. InverseOfAIDS. That’s the thing about MS: there’s no going back. You might figure out how to stand your ground for awhile, but you can never regain what you’ve lost.

Or so it wants you to believe. It’s a lying, capricious little shit of an invasive maggot. I should have known better than to believe anything it said.

Next up: acupuncture and Eastern herbs. By now we’d moved out of the slums of Orange, where Richard Rameriz hid out in the gravel pit behind the complex for a day or two, during which police helicopters hovered constantly and officers could be sited here and there, guns drawn, and every mother found something for her kids to do inside, get in the house, right now, come inside, I mean it, now. We’d also moved out of the sweet apartment where Tom’s brother-by-love slept on our couch Friday nights so he could watch Pee Wee Herman’s Playhouse with his niece and then hurry to the now-defunct Harlequin Theater to do a Saturday matinee and evening show before driving back to San Diego, and where the mother across the way made her son and daughter play together whether they wanted to or not because, she said, after she and her husband were gone, they would only be the only family each other  had.

Wow; a revelation.

But after somebody cased Tom’s van (it wasn’t hard—everyone in the county knew that paint job) and burglarized it while we were out seeing a movie, we moved into a nice duplex in Orange where our six-month-old kitten could run down the long hallway from Lona’s room to the front door, run up the screen to get a good push off, and then speed down the hall to make another turn-around on the bed. Good times. Our biggest problem had to do with our landlord’s contempt for renter’s rights. His popping into our front or back yard whenever he felt like it seemed like a minor issue at the time.

I was by then taking a slew of vitamins and supplements, all expensive, none remembered because their effect was minor at best. The smell of Eastern herbs literally cleared the house whenever I cooked them up, and getting them down my gullet introduced me to the wonderful world of gag reflexes, but I drank/ate/swallowed it all, ever hopeful. Well, mostly hopeful.

Not always  hopeful.

As I lay on the couch one afternoon—my normal position after 2 PM since my functioning hours were severely restricted by then, but I nevertheless still kept working because, damn it! I Was Not Disabled!—it suddenly occurred to me that I knew what our living-room ceiling looked like from every angle. I was low enough at that point to intricately out work a foolproof suicide plan that, thankfully, never got enacted simply because I was too fatigued to get up and do it. But the world, I was sure, and certainly my family, would be better off without me as Public Burden #1.

Fatigued. Yes, I was using MS terminology by then. I hadn’t been formally diagnosed and Mom had yet to pry open that locked vault in the back of her brain, but even an idiot could tell that everything I contended with regularly sounded amazingly just like exactly multiple sclerosis: imbalance, dropping things, sporadically blurred vision, difficulty swallowing, slurred speech, a spine that scoffed at the evolutionary concept of humans walking in the upright position, and fatigue, fatigue, fatigue. Not a need to sleep; a need to go down. A need to stop. And a need to put my finger on whatever thought I was trying to put my finger on and an inability to do so. What was I just thinking? Huh? What? Damn. What?

I was popping supplements as if they were helping. I was getting as much accomplished as possible in whatever time I had before my switch went off, as my husband put it, and I was done for the day, useless thereafter until the next morning. I always felt better in the morning. I was making healthy food and combining my food correctly. I had a positive attitude, damn it. But I could do our taxes three times and come out with three different results—we’d pick the one that showed we owed the least—and I was slowly losing inches of territory every day.

Then, in March, 1994, I had an aortic spasm.

It felt like a heart attack. It started at the end of a long walk, which I took at least once a day to exercise since I no longer went to the gym (let’s don’t go there). It also cleared my head. This particular day my heart started racing halfway through my usual course but I dismissed that, because I was walking to calm my anger, so of course my heart would be racing.

By the time I got to the archway over our front path, I could barely breathe. I literally dropped to my knees and crawled inside, dragged myself into the recliner. My breastbone was trying to shove through my back. The left side of my neck was about to burst, and the pain went down my left arm and all the way down to the left side of my groin.

Tom came in and demanded to know what was going on. I couldn’t talk to answer, but I forced myself to say, “Remedy,” because I also couldn’t allow myself to pass out. I knew the moment I lost consciousness someone would call the paramedics, I’d be transported to an emergency unit, and I’d die. I knew that, absolutely, no question, even as I struggled to contain myself in my body, because a really big part of me wanted to leave so, so badly, right now, isn’t it time? The pain wasn’t subsiding; it was just getting worse.

Tom fed me Rescue Remedy for the next two hours. The next day, I went to the doc-in-the-box around the corner—we were making enough by now for sporadic out-of-pocket medical visits—where the MD on duty determined I’d had a moderately severe myocardial infarction, and hooked me up to an EKG machine to show me just how damaged my heart now was.

It wasn’t. There was no damage. I hadn’t had an MI. It really pissed him off. My heart rate that day, maybe slightly fast, was perfectly normal and my heart murmur couldn’t have caused what I’d described. He was furious—not at me, but furious just the same. Imagine how I felt. I dragged around for over a month before feeling halfway human again.

So… the big news out of that fun adventure was that I had a heart murmur. He’d said it in passing, as if I already knew it, which meant…what? Not a clue. Really, as I look back at all this, when I thought I had some semblance of being on top of things, it’s distressing how clueless I was. It reminds me of the MS Society lunch I went to once, where they handed out a chart that showed what doctors used to think MS was, but now we know better. I couldn’t help thinking that in a few years their happy conclusions would easily be just another line on the chart. But I digress. I went home from the doc-in-the-box and added the new label to the list: Reynaud’s, Thoracic Outlet Syndrome, Probable Multiple Sclerosis, Heart Murmur.

Wheat. Wheat is what’s destroying your immune system, Bera insisted (remember Bera? Sister-by-love? Helped deliver Ilona? Went back to school to become a naturopath?). Wheat and meat. So I became a vegetarian, one that didn’t eat wheat of any kind.

Two years. Didn’t help.

Went vegan for eight months. Didn’t help.

Did a naturopathic detox. Didn’t help.

Did a supplement-based detox. Didn’t help.

Discovered Evening Primrose Oil and the fact that people with MS actually need red meat (thank you, thank you, Lord. Baruch ha’Shem). Helped a little, not enough.

Added a lot of shrimp to help my thyroid. It wasn’t thyroid. I had forgotten that.

By 2000, I was in very much not good shape. I seldom went to parties or to see Tom perform anymore, because I could not tolerate layers of sound, and the ringing in my ears provided the base. I’d had to use a wheelchair to get around the museums when we visited Chicago for Lona’s sixteenth birthday and had once flung myself out of the car in furious tears after Tom made me use an automatic cart to get around Costco.

I used a cane and sat down a lot just so I wouldn’t have to use a wheelchair. Lona got one in the house for an art project, and kept it around just in case. I refused to even sit in it. I couldn’t drive at night at all and “let” my daughter chauffeur me around during the day half the time. Fatigue hung on me like overgrown vines, holding me back, tripping me up, weighing me down. I went on eating binges to salve my depression and took cayenne pepper in capsules to keep the Reynaud’s at bay. I figured I had another couple, maybe five years before the end.

I was formally diagnosed that the year as having chronic progressive (not remitting/relapsing, yeah, what a surprise) by Dr. Stanley Van der Noort of UCI, who saw me on charity after the Multiple Sclerosis Association of America (MSAA) paid for a diagnostic MRI. He talked with me at length because, he said, Reynaud’s and Multiple Sclerosis is not really a good combination. I offered to drop one. He laughed. The point was, with the way my MS was progressing and the severity of my Reynaud’s anything he might prescribe for the one could negatively impact the other, and visa versa.

Van der Noort, whose name I could easily be misspelling, is the one who immediately recognized my non-myocardial infarction as an aortic spasm, and assured me that if I had gone to an emergency room, yes, they would have no doubt been treated me as if I’d had a heart attack and I probably would indeed have died. How fortunate I managed to stay conscious. I should work on that ability, and if it ever happens again, he cautioned, avoid going to an emergency room, because not only were MS and Reynaud’s are not really a good combination, the Mitral Valve Prolapse (renamed from heart murmur) and TOC (re-acronymed from TOS) didn’t help matters.

“Keep taking that cayenne pepper,” was the last thing he said to me.

So there I was, sitting in a rocking chair in the living room of our three-bedroom, one-family house talking to my husband and daughter one fine September, 2000 day discussing something of some import, God alone knows what at this point, when my lungs stopped.

They just stopped.

No in-out, no deep breath, no air movement whatsoever—and, as with my earlier sphincter incidents, no manual control, either. My brain screamed, “BREATHE!” My lungs just said, “Nope.”

A few eternal moments later, they started again, in-out, as if nothing had ever gone wrong, as if they’d never stopped, as if nothing had happened, what was I making such a fuss about?

Oh! I just remembered what we’d been talking about: funeral arrangements in the event of what seemed like my imminent death. And that was before my lungs stopped.

I gave away my clients. I’d been teaching a rudimentary version of how to be a ghostwriter for a few years against the possibility that sometime in the distant future, I would need help.

This was it. My career was over. I was ended.

And then I went blind. Totally. But only in one eye.

Still, I freaked.

That’s when I found out I had a “textbook” case of Reynaud’s, because while waiting for a neurologist to show  in yet another emergency room—I’d been in and out of them a number of times by that point, always with the same result: have some naproxen, diagnosis: probably MS (which I didn’t believe)—I started shivering and blanching. We were at the county hospital, which was long ago taken over and immensely improved by UCI, but was even then a teaching institution. Instead of rushing in with extra blankets as Tom requested, every intern and resident in the place—and probably some awoken from their off-time sleep—crowded into my tiny curtained enclosure to exclaim, “Look at her fingers!” “Wow, feel her nose.” “Just like in the textbook.” “Can you take off your shoes so we can see if your feet are white?”

No, I couldn’t. I was shivering too hard and my upper back had turned brick, as it always did during an attack. God bless my lousy memory, I don’t know how long it took for someone to show up and chase them all away or if that’s what happened at all. I’d like to think Tom did it, but I recall zip after the textbook flurry. Whatever. The next day I saw a specialist who gave me another fun label, “optic neuritis,” and told me a) this was probably MS, and b) my days of wearing contact lenses were over.

Doctor … damn, his was an important name. I liked this one. I remember his lab room and his waiting room—unless that was the other guy’s waiting room—but not his name or his face. La de dah. I think it was after my second or third visit that our always-on-its-last-spark-plug car broke down. My vision had returned enough to drive but not, apparently, enough to view anything with intelligence, because even though I already suspected (actually knew) I was pregnant, I pushed the car out of traffic and up the incline road to a safer, flatter spot.

By myself.

Later that evening, I was no longer pregnant.

I lost five babies in all. Baruch ha’shem for Ilona. In case you’ve never had a miscarriage, here’s how it goes. First, you have sex. We did that, sporadically enough that Tom’s sperm count was always high. During one episode of coitus or another, you get the sense that you just got pregnant. I always knew. I’m not unique: lots of women know. But I think I knew because by then I was so attuned to what was going on in my body that I felt every minor tickle and wrinkle. (One might say I was somewhat obsessed, but then “one” and I never got along well, anyway, so “one” can just keep “one’s” mouth shut.)

You miss your period. I did that. You come up on the next, or miss it entirely. The part of your mind that knew you were pregnant says, “See? I told you so!” The part of your mind that insists no one can simply tell when they’re pregnant says, “Shut up.”

Then you start to bleed. Not like a normal period. It hurts more. And differently. A bad cramp comes along and you sit on the chamber pot and pass something that could simply be a clot. But as soon as it evacuates from your body, you burst into tears.

Miscarriage.

The last one I had was a fooler. Not only did I not think I was pregnant, I was pretty sure I had already started menopause. No period for almost four months at forty-eight seemed like peri-menapause to me. Then I got clobbered with the kind of contractions I remembered from having Lona, followed by an achingly painful start of my period, during which a long (I can’t say finger-long, because my fingers are short and it was longer than them), very dense mass ripped out of my privates and into the waiting water. The pain backed off, the tears burst forth, and an hour later when they stopped, I knew.

Miscarriage.

Why didn’t I go to a doctor for any of these episodes, you ask. Well, there’s the rub. Tom was a musician, I was a writer. We lived off the grid of society, on the perimeter of all that’s good and acceptable in the world. I fell between all medical-coverage cracks: too poor to sustain insurance, not poor enough to qualify for government help, local, state, or federal. (Although the state did once classify me as unemployable. Not disabled, just unemployable. I had no idea what that meant. I don’t think the guy at the welfare office to whom I showed the letter knew, either. What did it mean to the person who typed it up? Meaningless words meant to put me in my place? Or a helpful phrase that would pave the way to…what?)

Not having access to AMA treatment was probably my saving grace, because it forced me to look elsewhere for help when my legs refused to propel me forward, my spine found better things to do than hold me up, my hands forgot the meaning of “grasp,” the electricity running up and down my back could charge a car battery, or my sphincter went out for an unscheduled coffee break.

(For the record, there is no other experience quite like coming to a stop at a red light and realizing that your bladder is emptying itself right then, right there, as you sit. No pain, no warning—in fact, no sensation at all in that one place of all places where you always want some kind of sensation, even if it’s horrifically bad, which this wasn’t. It was nothing. And I couldn’t stop it. My mind screamed, “Nooooooooo!” and my nervous system said, “Huh? What? You talking to me?” In the back of my head, I could hear the damn MS laughing. “So, you think you can control me with all your vitamins and holistic crap? Well, take that!”)

Lesson learned. From that time forth (I’d like to say it was the first and last time this happened. That’s what I’d like to say. I really would), I never let my bladder be full or even half full, or semi, quasi, slightly containing anything. I emptied myself every 60-90 minutes, slipping away from wherever I was and back again with nothing but a head tilt or smile as comment.

This wasn’t stoicism. This was war.

The last time I saw a doctor about my “probable MS” was in some kind of clinic with a lot of corridors in which I got lost leaving. The leaving part was the only good thing about the visit because he said, “Reconcile yourself to a wheelchair,” and I said, “F**k you!” which would have been such a great exit line if it had been followed by my striding out of the room with my head held high, except at the time I was purposely not using a cane because, damn it, I wasn’t going to use a cane (or two), and instead of striding I stumbled, hit the wall, stumbled some more, and generally did a perfect imitation of someone who needed to reconcile herself to a wheelchair.

I could recite the myriad hurdles my antagonist threw at me, but to what end? Take a look at any list of possible MS symptoms; at one point or another, I had most of ‘em. Each new incursion just got me angrier and angrier. Who the hell did this f**king dis-ease think it was?

A long, protracted war.

On December 14, the doc said I’d probably deliver shortly after the first of the year. I said, “No,”—hey, like mother, like daughter—and Tom and I set off to walk the baby out. We walked one mall for four hours that day and two malls the next day for eight hours. By bedtime that night I had labor twinges. Somewhere around midnight, we called our support person Bera Shur, now Dr. Bera Dordoni, my naturopath, and told her to meet us at the hospital.

We checked into the Santa Ana Western Medical Center’s birthing room around 2:30 AM; Ilona Nicholle made her debut later that morning, around 10:30 on December 16, 1982—too late for us to do the Christmas show at that very hospital at 1:30 that afternoon. Bera and her crew subbed for us.

I just this moment realized that my daughter’s father died at approximately the same time 27 ½ years later. I only mention it because it’s the kind of numerical connection that would have fascinated my mother-in-law, alev ha sholem. Tom would have liked it too. I find I channel him sometimes.

Anyway, six weeks after Lona was born, the three of us packed our stuff into our 1968 Chevy van and its new pull-along equipment trailer and headed for our first post-partum gig, in Moberly, Missouri.

Six weeks! I took that precious baby away from her grandmother, my mother, at only six weeks! What was the matter with me?

Simple: we made our living playing music on the road. I realized now as I did then that this was not the most popular decision we could have made. Looking back, though, I’m so grateful for those next six months the three of us spent just with each other. I don’t want to get all gooey, but it was a magical, if sometimes terrifying interlude. And my pregnancy healthiness just kept on going.

We landed back in SoCal just in time to take a 4^th of July gig someplace across from Disneyland, so we could oooh and aahh at the fireworks every 9:30 pm for the next however-many-weeks-it-was until we were replaced. It gets chilly at night in California, but I was still breastfeeding, so I wrapped myself in useless shawls and moved around a lot. I wasn’t on the drums anymore, which turned out to be a major mistake and an even bigger advantage.

We went back to doing our pooka imitation but with a few added wrinkles. Now and then I took a temp job; once, Tom settled himself into a full-time legit job. None of these took hold: he was a musician’s musician, and I had already put in my office-worker time. Things between us, rocky from the start, got tense and cranky. Pretty soon, we were confronted with that ultimate choice all couples face sooner or later.

The marriage or the act.

A no brainer, eh? He got a piano gig, feeling nothing but relief. I answered auditions for other groups feeling … lots of other, not quite so wonderful things. But neither of us was going to give up our careers or each other, much as we often wanted to. We could hate and spit at each other, but we couldn’t leave.

We were joined at quantum-physic’s zero-point field.

My first audition was fan-f**king-tastic. All guys, great music, we jammed for a couple of hours, I loved it. Yeah, great, thanks for coming—but we can’t hire a girl. Sorry.

As I loaded my drums into the back of the car, I must have hit my head on the hatchback, because by the time I got home I had a horrific headache, the type that put me down, that made me so dizzy I couldn’t see. Hadn’t had one like it since … I couldn’t remember. Years, absolutely years. Long before the baby. Long before we went on the road. Horrible headache. Tom took me to the emergency room—we didn’t have a doctor anymore—but they couldn’t find any evidence of injury. They sent me home with some naproxen samples and a discharge sheet that said, “Probably MS.”

What?!

No.

I went to another audition the next day, fully expecting to land this one since it was for an all-girl band. Apparently, however, sometime during the night, some non-musician had snuck into my room and replace my arms and legs with their pathetic limbs, because not only couldn’t I keep the beat, I could start the beat. I had no strength, no coordination, no syncopation whatsoever. I didn’t even have a tail to droop between my legs as I dragged my sorry butt home.

I didn’t get the gig.

But I knew I could play! Maybe no one wanted to hear me sing (trust me, no one wanted to hear me sing), but I had recordings and applause and compliments that proved I could play! Obviously, I was just out of shape from laying off for so long. Obviously, I just needed to pump myself back into my former lean, mean, drumming-machine condition.

So I went to my mother’s house to do laps in her pool. Sixty laps up and back, to be exact—that’s what I aimed for, that’s what I did. Don’t know why I picked that number. Not a little pool, either, a good-sized pool, shallow on one end and deep enough on the other to warrant a diving board. I was only 30, maybe 31 years old. I could do this!

The next morning, my right hand would not grasp my daughter’s hair brush. I looked like I was wearing a catcher’s mitt. Tom freaked. I freaked. The woman at the UCLA Vascular Surgery department freaked and juggled schedules to get us in asap. We drove up there angry as bear to find out what the heck was going on with my Reynaud’s!

The doctor put his finger on my pulse and held my arm over my head. “Did anyone ever tell you you have Thoracic Outlet Compression?” he asked.

“No, I don’t.” Mom had nothing on me when it came to denial.

“It’s a simple choice. Keep playing the drums and die. Stop playing and live.”

Okay, it’s not that I was really thinking this over, it was more that I was shocked to find out anything was wrong with me beyond the Reynaud’s, which was familiar and workable, and on which I blamed absolutely everything that hurt or didn’t work in my body. Still, I hesitated long enough for Tom to burst out, “Are you out of your f**king mind?! We’re selling your drums and that’s it!”

Which we did, to my AFM union rep, for a lot less than they were worth, but enough to make that month’s rent.

So fine: now I knew what was wrong with me. Does TOC cause my horrible headache? No. What did cause it? Don’t know. What should I do for this new congenital problem?

“Try not to use your right arm too much.”

Wow. That went right along with how to handle Reynaud’s: “Try not to get too cold.” So it was all just a question of not doing. Hey, I could not do with the best of them.

We had to keep paying rent and buying milk, so while Tom gigged for $35 here and $50 there—we never made that little on the road—he and our road manager and I wrote a book about playing the clubs. Translation: I wrote, they critiqued and took out jokes. Not knowing anything whatsoever about the book business, I sent the manuscript off to the five biggest publishers who put out books about the music industry. It still being the late 1980s, before the business flipped on its ear, spun around three times, and spat over its left shoulder, the two largest of them, Cherry Lane and Billboard Books, got into a 15-second bidding spat over our kicky little title that would enjoy its 15 minutes of fame when Adam Somebody plugged it on MTV.

We went with the top dollar offered by Watson-Guptil, owners of Billboard. That check, split three ways with our two shares lumped together, covered—just about nothing.

“Has anyone ever told you that writers don’t make any money off the books they write?”

“Yes, they do,” I insisted.

Sometime during his last stay in the hospital, about a week before he died, my husband asked me, “Don’t you ever get tired of being wrong?”

I said, “No, I’m pretty much used to it by now.”

Within a few weeks of the funeral, we’d packed everything into a storage shed and set off to see the country in our 1978 Chevy half-ton van. We were young, we were beautiful, we were as stupid as they come, and if I didn’t bring up his pot smoking, he didn’t bring up my weary clumsiness. A match made in heaven.

Here’s where things get tricky, because although I remember most of the places we played, I don’t really remember the order. I’m pretty sure the first place was Moses Lake, Washington, where the stage was right in front of a single-pane window separating us from the lake (Moses Lake, that is) despite it being the middle of winter. Moses Lake is very cold during the winter. Reynaud’s-attack-inducing cold.

The second night we were there, a man casually walked up to the enormous painting up the stairs stage left, plucked it from the wall, and set it off to the side where apparently no one would notice. Damn me, I noticed, and the waitress, after just as casually returning the painting to the wall, comped me a hot buttered rum in gratitude.

Enough of those, and my fingers and toes felt warm and toasty, thank you. Welcome to the wonderful world of the traveling musician. Peddle-to-the-metal runs after last call on Sunday so we could be onstage two states away for Tuesday’s downbeat. Lots of coffee on the drive, lots of booze on the gig, lots of jokes onstage while Tom figured out what tune we were going to do next—and no memory at the end of the night, damnit, of what I’d said to make them laugh so I could hone it for the next show.

Frustrating.

Afternoons, we looked for vitamin stores—this was before the health-food craze or personal computers—trying to find a substitute for “T.” It wasn’t actually helping, but we were sure that in time it would. Meanwhile, we ate like idiots, drank all night, and fought over my inability to stay on pitch and his inability to create a set list. My talent was nowhere near Tom’s, but my time was usually dead-on. Even so, we rushed through some songs so fast we finished almost before we started. He took no consolation in the fact that the Commodores rushed every tune on their hit LP. I took no consolation in the fact that I could sing harmony against almost anything.

Confession: I was better at harmony because I didn’t really hear the melody; I heard the counter note. I couldn’t really sing worth a damn anyway, but my voice against his usually worked. Ever hear “Misty” or “New York, New York” in full harmony, first note to last? We were unique, and living the good life with just the two of us (a ballad we did, by the way, endlessly). We were young, free, healthy, in love…

Okay, he was healthy. My body kept slowing down. The more I practiced the worse I got, so I gave up practicing and once we’d nailed down the vocals, we gave up rehearsing, too. If I sounded good at the beginning of the night, I was off-key and dragging the beat by the end. Totally backwards: musicians get better as the evening goes on as they get warmed up and into the music. I got cold instead of warm, disoriented instead of into it, and exhausted and broken by the time we hit “Pink Panther,” our out song, to close the show. Tom needed to run or smoke or find another place to play when we got off stage. I needed bed. I took off my makeup the next morning in the shower. I was lucky to get my clothes off. My hands hurt, my arms ached, my legs stumbled, the top of my head hurt.

Next morning, I was fine. We pushed on.

Don’t remember where we were in between—Edmonton, Alberta, I think—but at some point we got to Terrace, British Columbia, one of the most beautiful spots on earth. Tom made some local-musician friends right away (translation: Tom found a local dealer right away), so when I didn’t duck far enough to get under that iron bar one night, one of them took over for me when we returned from the hospital.

Yes, you read that right. I split my head open, went to the local Canadian fix-it clinic, got patched up (“She probably has a concussion; don’t let her fall asleep for the next, 10, maybe 12 hours, okay? And if the keeps oozing, come on tomorrow”), and then went back onstage. What a trooper, eh? I’m pretty sure I changed my clothes first, since split heads tend to gush. Don’t remember, but I do recall singing “Rolling on the River,” or at least some words and notes to that effect, from stage left while Tom’s Canadian buddy, whatshisname, put me to shame on my own chrome-wrapped Yamaha power drum kit. Afterwards, my darling hubby put me to bed and then took off with the drummer to…whatever.

I, on the other hand, lay there weirdly awake, trying to get away from the strange sensation in my back that I couldn’t stop no matter what position I rolled to. My muscles clenched. Then they ziggled. Clench, ziggle. Clench, ziggle, ziggle, clench. Ziggle, ziggle, clench-clench-clench, ziggle, ziggle, ziggle.

It’s called stasis and is textbook typical of M.S., but we didn’t have that textbook or even an inkling of that diagnosis. The next day it was gone. Musta come from hitting my head. Or maybe my Reynaud’s. I blamed a lot of stuff on Reynaud’s. It was a very convenient and mostly silent scapegoat.

We went on with our pooka imitation, appearing here and there, now and then, in this place and that, occasionally going home to recoup and then heading out again. At some point, we played the Hyatt or Hilton or Holiday Inn in Rocks Springs, Wyoming. The bar was directly behind the stage, separated by a bunch of vertical slats through which, if you were drunk enough, you could grab my ass, and I, in turn, could shove a drum stick up your nose if you touched me one more time, buster.

It was only a threat. I never actually did it. Gimme a break.

One night between sets, we looked in on the “casino extravaganza” going on very loudly in the banquet room at the end of the hall around the corner. Turned out to be a members-only event thrown by the local synagogue—”the” synagogue in the region, as a matter of fact—to raise funds, a classic religious practice. As soon as the temple president realized we were lonsmen (fellow Jews), he invited us to the community’s Passover Seder, out of which we had to duck right after permanently clearing our sinuses with the hottest horseradish-on-matzo ever served anywhere, anytime. I can still open my nose right just thinking about it.

We were also invited that Easter Sunday to another temple member’s bris from hell.

It started early in the day, leaving us plenty of time to return to the hotel and nap before work. The baby cried. The mother tittered around making sure everyone enjoyed the buffet. The father strutted with his wailing son, his face scrunching now and then into perfect despair. The mohel was late, making the big topic of discussion a five-year-old whose face was done up like a model’s, and who wisely stuck close to her mother. Tom exchanged a lot of glances and stayed within clutch distance of each other as I milled about and he drank. Finally, the mohel arrived and the ceremony began. In a nutshell:

The kid screamed. The father blanched. The grandmother gagged. The baby screeched. The mother cried. The grandfather had to lie down. And then the mohel asked for a sharper knife.

I kid you not.

Two and a half hours later, Tom and I were back at the hotel making our own baby, that very day, Easter Sunday, in Rock Springs, Wyoming, repeatedly and frantically, trying to block out the scene we’d just witnessed from our minds. It didn’t work, but by the time we got onstage, I knew with absolute certainty that I was pregnant.

We both prayed it would be a girl.

And I felt fantastic.

My new California doctor said my mother was a nervous woman and I was just like her: nervous. That’s why I was so tired all the time. Living with her, he said, would make anyone nervous. I needed to get away from the stress of my family. I moved back to Chicago, got my own an apartment in Roger’s Park, but being away from my stressful family didn’t make me any less tired. I one time thought my head was going to explode from the pressure and pain, so I called on my former Chicago doctor who told me I was getting upset over nothing: it was just the same old/same old headache, blurry vision, and swollen glands I always had.

Good to see you again. How’s your mom?

If he thought I had MS, he didn’t mention it, but then again he also wouldn’t let me see my medical records because I was still under 21. Legally, he said, he couldn’t show them to me.

Sound like a crock to you? Sounded like one to me, too, but in distant retrospect, I suspect he was merely protecting his rear echelon.

Moved back to California after breaking up with the lying piece of scum I’d followed back to Chicago. (And lost my best friend in the process. Lying piece of scum.) Got an apartment at Wilshire & Berendo in Los Angeles, earned my keep doing office temp work, and salved my soul volunteering at Cedars of Lebanon Hospital evenings, where I saw Tony Francisco visit his wife in the maternity ward and cried when Bobby Darin died in the other wing. Decided I wanted to go into the medical profession (but still didn’t want to go to college, which is why I joined the Air Force in the first place; the logic in those two concepts eludes me at this point, too), so signed up to become a Licensed Vocational Nurse through a now-defunct program at the now-defunct Queen of Angels Hospital.

Sure, it was a lot for someone with as little stamina as I had, but I didn’t want to be lazy. Lots of people work full time while going to school.

Which is exactly what I said to the doctor in the employee emergency room at Cedars when I came around. Couldn’t name the current president (Nixon) much less the vice president (Agnew; just showing off that I know the right answers now). Wasn’t sure what day of the week it was. Why? Wasn’t I scheduled to work that day?

Diagnosis: simple exhaustion, brought on by not recognizing that I was not one of those people who could work and go to school at the same time. I tossed a coin, my mother caught it, and I hit the freeway at 4:30 every morning to get from my parents’ house in Orange County up to LA in time to pick up two classmates and make it to the floor by 6:00 AM change-of-shift.

I slept all weekend. All weekend. Don’t you ever date, someone asked. There’s a guy in Chicago I’m going to marry, I answered, even though we hadn’t talked or written at that point for months and neither of us had never even broached the subject of matrimony. To be honest, it shocked me when I said, but only because in that instant I knew it was true.

Nursing school didn’t work out for me (and I apologize now, publicly, to that teacher I inadvertently got fired. I’d have apologized personally years ago if I could remember her name, face, nationality, or even race. Mine is an equal-opportunity memory lapse), so I took advantage of my “honors at entrance” acceptance to Cal State Fullerton, not yet a university, and started their pre-med program.

All went well the first semester, which was actually the year’s second semester, because I didn’t have to peer through a microscope, and the guy who joined me on our “on your honor” 18-hole golf final didn’t feel like doing all 18 holes, either. We did about five or six holes and made up the rest on our scorecards, he with an eye to getting me drunk and into bed, me with an eye toward just getting into bed, the better to get some sleep. I went along with his version of hitting the sack so I could get to the good stuff, but the next day, I didn’t feel right, so back to Doctor Jerko I went.

You notice I’m not printing his name. He’s still around, currently the head of some hospital, and probably still as incompetent as ever. I saw him one Christmas season in May Company a lifetime or two later. Recognizing me, he gleefully asked about my husband. (Everyone always asked about Tom first; even teachers he never had in elementary school knew him. When I went up to a teacher I had had in elementary school, she said no, she didn’t remember me, but that was probably because I was “eminently forgettable.” And the hits just keep on coming.) After assuring Doctor NeverMindHisName that Tom was fine, thank you, I said bluntly, “I have multiple sclerosis”—because by then I knew. The look on his face told me he knew, too. He’d known forever. Why he never wanted me to know is beyond the workings of my simple brain.

Dumbass doctor.

But I didn’t know any of this the morning I left whatshisname’s bed feeling not very well, so I went to his, Doctor MayHisBallsShrivelUpAndFallOff’s, office to get checked out.

I was so exhausted I fell asleep on the exam table waiting for Doctor APoxOnHisNameForever to come in; when he did, he was purely exasperated at having to wake me and told me, without pausing to do an examination or glance at the chart, that there was nothing wrong with me, there had never been anything wrong with me, and I should stop coming to his office and wasting his time.

Okay, that’s not the amazing part. The amazing part is that after Tom and I got married, we actually used MedicalBastardIncorporated as our primary physician, because he was the only physician I knew and Tom liked him. Then, one day, he, Tom, witnessed him, Dr. BlowItOutYourButt, talking to me.

I am so glad I never gave into his demand that we get a gun in the house.

Buh bye, Doctor RhymesWithDick.

But I’m jumping ahead, because Tom and I didn’t get married until we hadn’t gotten married four times already and my mother hadn’t gotten her deposit back on that Italian lace. But, what the hell, I’ll jump ahead because you get the picture: there was nothing wrong with me. The headaches were meaningless, the blurry vision was my imagination, and what I called “extreme weariness” could be eradicated by a little exercise and better sleep. Did I snore?

I do now, but no, I didn’t then. I slept like a log. Whenever I could find someplace horizontal.

It wasn’t until we’d been married for a few months (in a judge’s chambers, because my mother was not going to plan another wedding, dammit, and Tom felt compelled to stop the car on the outer drive to call her from an emergency phone to tell her that, yes, we were finally, formally, and in all other ways married) that I sustained the permanent back injury driving for 24 Hour Airport Express, another now-defunct operation, that sent me to Dr. Adam Daniels, Chiropractor Extraordinaire, who diagnosed all my problems in one swell foop.

Thyroid.

He said my problems were all due to low thyroid output. Or was it high thyroid? Don’t remember, doesn’t matter, because no, it wasn’t thyroid, but he was so sure it was, and we were so glad to have a definitive answer that we bellied up to the bar and laid down our fifty-cent piece.

Why doesn’t it show up on my blood tests? Because … well, he didn’t have an answer to that, but it was obviously thyroid, it had to be thyroid, so we all accepted it was thyroid. No drug pusher, he recommended I get a supplement called simply “T,” and assured me that if I took it, my exhaustion, headaches, and bleary vision would disappear over the next six months.

Unfortunately, he was dead six months later, probably from cancer, or perhaps from the stress of having both his wife and pregnant mistress working together in the same office. But he was a great guy. And before he died, he showed Tom how to put my back in (he had great hands) and me how to put Tom’s back in (not so great, but crudely effective) so that when we went on the road, we could take care of each other.

So we went on the road.

Tom isn’t here to tell me, but my daughter remembers we found out about the 1968 diagnosis in 1999, because she had a telemarketing job that summer and came home one day excited about a big sale only to find her father ranting around the house.

“She knew! She f**king knew all along! How the f**k could she not tell us! Jesus f**king Christ, Claudi!”

(My apologies to any Christians reading this; I just wanted to give you the flavor of his speech pattern. Won’t happen again.)

(Probably.)

Perhaps this is a good point to introduce Tom, since, after all, he was an integral part of how I dealt with, battled, and ultimately vanquished our mutual foe, M.S.—and also since I met him the year I was diagnosed and lost him the year I recognized the bastard’s absence from my body.

Remarkable coincidence, huh?

Yeah, right.

Tom and I met twice that summer before the mosquito strike: once outside Niles East and once at Susie Dale’s house. Those were both more encounters than actual meetings, but we nevertheless immediately knew that we knew each other, even though we didn’t yet know each other. And despite sensing an immediate and irrepressible draw to each other, neither of us wanted to have much to do with the other at the time, except to spend time together.

Don’t even ask.

It was some decades before we realized we’d played out this dance before in at least one if not several previous incarnations. At that particular point in this particular go-around, however, our appearance in each other’s lives was instantaneously irritating, reassuring, sensually (but not sexually) charged, and just all together too damn comfortable for either of our comfort. During our best times over the next 42 years, we needed a lot of space from each other. During our worst times, we screamed at each other: “I LOVE YOU!” “YEAH, WELL I LOVE YOU, TOO!”

Another interesting match. They run in the family.

Jumping back to the MS: since no one acknowledged that I had it, I was never treated for it, and my headache, blurry vision, and dizziness just disappeared some six or seven months after they started. People clued into their diagnosis would recognize this as remission in a remitting/relapsing course of the disease. Since the concept of such an illness never entered my family’s consciousness, our take was that I’d either had a miraculous recovery or “whatever it was” had simply run its course. Take your pick. Didn’t matter. Life went on.

Here’s the kicker, though: when “whatever it was” went away, it didn’t take my recurring swollen glands, blurry vision, and dizziness with it. They came back now and then, here and there, like Harvey, the pooka, from the movie with Jimmy Stewart or the Broadway play where he originated the role. We should have bought stock in the company that made Ampicillin, because we could have gotten wealthy just from my consumption. But it always worked—or it worked good enough—so what’s the point of bellyaching?

This made no sense from any and all angles, but thank God there wasn’t anything really wrong with me.

I didn’t go out much in high school, because I preferred to hit the sack early. And I slept in late so often on the weekends that one of my boyfriends said it was pointless to call me before 10:30 in the morning, because I’d either still be in bed or just getting into the shower.

I was tired. Bone-tired. Constantly, constantly weary. And the more I exercised, the more I pushed through, the more I tried to make myself stay up and dance (never made it through a single full tune, never, not once), the more tired I got. I couldn’t quite hit any of the notes I was supposed to hit in mixed chorus, either, no matter how much I practiced, because I couldn’t seem to figure out the intricacies breath control: the more I tried, the more it tired me out. Obviously, I wasn’t trying hard enough. Obviously, I was just being lazy.

I got into choir for one semester my junior year when I somehow found the voice to hit an amazing note—one I’ve never hit since, by the way, and oh! how I would have loved to get that note back when Tom and I were on the road, but no, it was a one-time, one-note performance, hope all of you were present for its appearance because we shall never hear of such a note again—but had to go running out in the middle of class one day because I had a Reynaud’s attack.

Okay, backing up—did I mention the Reynaud’s before? A hereditary vascular condition wherein the capillaries in one’s hands and feet go into spasm when one gets too cold. Or too stressed. In the choir room, I got too cold, and my protector—aka Tom, aka Berdine Wishne’s boyfriend, and just what the hell was he doing hanging around with someone like me?—explained to our director and his mentor, Mr. Auge, that I couldn’t handle the air conditioning, the choir room being the only one in the entire school that wasn’t hot and humid during summer and frosted over in the winter.

As soon as school let out that year, my family moved from Skokie, Illinois to Orange, California because my mother’s Reynaud’s was not going to make it through another winter without her either driving her 1965 Dodge convertible off a cliff or destroying her liver with the then-accepted medication-of-choice for Reynaud’s: liquor.

I was thrilled. I hated Skokie. I didn’t get along with most of the kids in school (a few years ago, Berdine and her husband came down from Spokane to see Tom play at Savannah’s, a beautiful 5-star restaurant where he and Diana D’Itri held court for some three or four years, and she, Berdine, asked me if I’d really meant it when I wrote a story for the school newspaper claiming I was a witch, or was I just f**king with everybody. Actually, I seem to recall I was a member of a coven at the time, but I told Berdine that it was a little bit of both, because I frankly didn’t remember my motivation for writing the article, and because my brain could not wrap itself around the idea that someone would actually remember a throw-away article in a high-school newspaper 38 years earlier. I elaborated, as is my wont [or hadn't you noticed?], by pointing out that Miriam, Moses’ sister, was Wiccan, a fact that may or may not be true that I picked up who-knows-where, but it sure sounded good at the time and startled Berdine enough that her eyes went wide. But I digress…), I hated the cold, I got sick and bitten up every summer (no MS clues there, nosiree!), and the only people I was likely to miss were my friends Liz and Jackie. For some inexplicable reason, I didn’t think about missing Tom, because if I had, I would have just shrugged, knowing he’d always be there.

Tom loved telling the story of how he walked over to my vacated house the day after we left and mused, “How can I marry her if she’s moved to California?”

We had never dated. We never did, in fact. I don’t know why. Probably because it was psychically unnecessary. We were so damn connected we spent the next nine years trying to not get married.

Didn’t work, which is why he was the one to discover the connection between MS and English Primrose Oil. But that was years later.