The first is Michael J Dowling’s White Paper on Publishing Options, in which he very clearly spells out the advantages and disadvantages of today’s publishing options. Check it out at: http://www.michaeljdowling.com/pdf/Michael-J-Dowling_Publishing-Options-White-Paper.pdf.

The second is my discussion with JW Najarian about ghostwriters and ghostwriting on his quite fascinating “Cause and Effect” site. Look for it at: http://jwnajarian.wordpress.com/2012/01/24/claudia-suzanne-professional-ghost-writer-on-learning-how-to-find-one-or-be-one/

What a great time to be in the book business!

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.

On the List. I use that phrase so often that my newly reorganized company is replacing our long-standing imprint, WCPublishing, with On the List Publishing. OTLP joins Iridescent Orange Press and Bad Walnut Media, two completely new imprints, under a new division: Read As Written Publishing Group.

About that newly reorganized company: we’re still Wambtac Communications. In January, we’ll become Wambtac Communications LLC. Besides a seriously expanded publishing enterprise, we’re also expanding our educational pursuits. Ghostwriter Certification Training is splitting into two semesters and will be joined this fall by The Story in Your Head, a fiction workshop co-taught by JD Moore; Before Copy Editing, fiction and nonfiction; and, if the storm don’t come and the creek don’t rise, What You Know, a nonfiction/memoir workshop.

We’e also adding other new teachers to our roster besides JD (are they all GCT grads? Well, I’ll be damned–most of them are!) and a Ghostwriter Guild.

Pretty ambitious, eh? But I’m not doing it alone! We’ve got a new President, a new COO, new CFO, new strategic alliances with designers and printers and advisors and PR people …

It’s all coming soon. Watch this space. It’s all on the list.

When we last left our reluctant storyteller—that would be me—she had wrestled her intruder, a.k.a. multiple sclerosis,  to a virtual standstill. The symptoms were chronic but not progressing, and nothing new had darkened the horizon for quite awhile, health-wise.

Lest you think I did this all myself, let me assure you I had more help than Houston has during a shuttle launch. My parents supported me emotionally, physically, and monetarily, stalwartly and uncomplainingly, throughout the entire nasty affair. My daughter, Lona (short for Ilona in case you hadn’t figured that out), gave up wide stretches of her childhood, youth, and young adulthood to drive for me, fetch for me, remember for me, do for me, worry for me, and sometimes even think for me. Bera researched, suggested, denounced, prodded, guided, and did everything but slap me upside the head with a 2 x 4 to help me.  Ron, bless his wacky, wonderful heart, just kept sending those Chelation tablets. My friends all deserve a Presidential medal just for hanging with me all this time because I was never —trust me on this—stoic or silent. My mother-in-law, Doris, gave me the kind of support one might expect from a BFF without ever once making me feel I was too needy or intrusive. And Tom …

And Tom.

Tom had a psychological break in October, 2006, just about 18 months after his mom died. It was as predictable and expected as Phoenix heat in July or wind down Michigan Avenue in the winter, but remember the old musician story about the guy who knows that in five years, he’s going to turn a corner and somebody’s going to punch him in the nose? As much as I could have clocked Tom’s crash with an egg timer, it was still a punch in the nose.

This was right in the middle of us “acquiring” the three young adults we took into our home (and hearts) and sent to community college. Tom balked at every single new person that came along until the point when he said, “Go get her!” about Tyger (a.k.a. Kathy) after Lona described Tyger’s living conditions down in Texas; “Go get the cat!” about Nyxie (a.k.a. she doesn’t like her real name so I won’t use it) when he heard no one was actively caring for Taru at her parents’ house while she slept on our floor to avoid the 45-minute drive to and from work every day; and “Get your ass in here!” about Kata (a.k.a. Eric) when he was sleeping on our back porch because he’d gotten himself into trouble and had no place else to go and the weather had turned cold and rainy.

My husband was a very strict, hard-nosed guy with a soft, marshmallow center. Or, as one friend wrote on his death: “He was a gentle soul with a bombastic spirit.”

I have to believe our expanded family gave him something and someone else to worry about over the next three and a half years. I know he grew to love and cherish them. And rely on them; he definitely came to rely on every one of them, almost as much as he relied on Lona.

Of course, he relied on me most of all.

Those years were very tough. He rallied now and then, but mostly he wanted to die. He had no plan; he wasn’t actively suicidal. He was just done. The live-music business was dying (it’s beginning to revive again now—also predictable—in a haunting example of too little, too late). He had finally finished his beloved History B.A. the previous semester and was calf-deep in a master’s program but, “To what end?” we bantered endlessly. No one was going to give  a 50+ year old life-long freelance musician a straight job, no matter how many letters of recommendation he produced or how many applications he painstakingly filled out. His position playing the piano at Knott’s Berry Farm had become bone-achingly dreary, and his need for constant connection with me drainingly obsessive.

So we talked, which is to say, he talked. I listened. (Ironically [or not] I had written a  song for him called “I’ll Still Listen” back at the beginning of our marriage; he wrote one for me called “Just For Laughs”—an unwitting foreshadowing of our lives together.) He despaired; I encouraged. He grew nasty as he got more despondent. I grew angry as I got more impatient.

And the MS gave way, just a little bit.

We both put on weight, which gave him more cause to lose hope. I hated the way I looked, but could not help noticing that for all my extra weight, I physically felt better.

Was my miserable parasite invading his psyche?

In November, 2009, I took him to the ER (whoa—talk about your turnabouts). Doubled over with pain, he “knew” he had another kidney stone, that’s how bad it hurt, and demanded Toridol, if that’s the right spelling, for the pain. The damn ER doctor ignored his belligerent request and ran some tests.

It wasn’t a kidney stone. It was pancreatis. Very painful. He spent three days in the hospital, hallucinating from continual doses of heavy pain medications and telling me to, “Get the hell out of here.” I got the hell out.

I also jumped through a couple dozen hoops to get him on a county medical plan so he could continue to get medical attention when he came home from the hospital.

Instead, he continued to look for a straight job during the day and went out nights to figure out how to break into the dueling-piano world. He was a natural. But he was tired.

Tired was something I understood. My tiredness—not fatigue at this point, just tiredness—came from ghosting for my clients, creating the final edition of the definitive textbook (one reviewer called it the “seminal text”) on ghostwriting, teaching my expanded training program, handling the house, dealing with the kids and their school issues, and providing his almost nonstop psychological support. We tried going to a few actual therapists, but they did not give him what he wanted or needed, which became ever obviously more and more of me.

I didn’t voice it at the time, but in retrospect, the more of my time and energy he demanded, the less the MS did.

Huh.

On April 14, Tom turned 58 playing what would be his last gig, at the Villa Nova in Newport Beach. We’d sent word out that he was subbing for Rick Sherman that night, and friends and fellow musicians filled the room. The kids and I left after a few hours; I had to work in the morning and they had classes.

The next day, I took him to the Emergency Room in pain again. They sent him home with a few prescriptions. We didn’t have time to fill them, because the day after that, he returned via ambulance, spitting up blood.

I’m going to cut to the chase here. Between April 16 and May 29, 2010, we went in and out of the hospital. Tom received first one, then six, then another six units of blood for what was first a bleeding, then an obstructive duodenal ulcer. His demands for pain medication alienated every nurse and hospitalist (yeah, that’s what they’re called) who interacted with him, to the point that one gastroenterologist called me in the middle of a Saturday and said he didn’t want to have anything to do with Tom anymore.

On May 29, after that same gastroenterologist had run some tests and sent Tom to UCI to have a procedure done so he could eat again, we learned Tom had stage 4 cancer that had metastasized to his liver. “He has 6 to 12 months. There’s nothing we can do. You can leave (the outpatient bed) whenever you’re ready. I’m sorry.”

Okay, life changed.

Not going to go through that next month step by step. Use your imagination. Or don’t. Wish my Intermittent Amnesia would kick in for some this. But it won’t.

He died June 28 at 10:35 AM. I was by then functioning with a single brain cell. Did what I had to do, with enormous, above-and-beyond help from my parents, my kids, my brother and sister-in-law, Tom’s brother-by-love Leon Natker, and my own beloved rabbi, Bernie King, alev ha sholem.

The MS did not make a single peep. Not the slightest whimper. Sure, I slept a lot, but that was grief. My hair fell out—textbook grief.

The sun kept coming up every single day. Tom stayed dead long after the joke stopped being funny. He sent me a song the day he died through Bera. I remember the fact and the feel of it, nothing more. Had a few stasis incidents, utterly vanquished by Rescue Remedy. In November, I’d come to the end of my emotional rope and took off with Lona in my new, reliable vehicle (to replace that 1978 van that, yeah, Tom was still driving and Greg Vail now uses “temporarily” until…he doesn’t).

We were only going to be gone for a day or two, so, throwing caution to the wind, and not really caring one way or the other, I took no supplements with me.

We were gone for six days. I was fine until my body reminded me that MS or no MS, I was still a girl with a four-generation gastric dysfunction. Otherwise—no ill effects.

In  January, I got sick as a dog. With the flu.

For decades, I never got sick. No cold, no flu, no bug could get very far in my body, which was in active search-and-destroy mode, killing off my nerve connectors and brain cells and—wait, is that something new? Let’s kill it!—whatever else that had the audacity to penetrate my system. Now, I was on my back, coughing, wheezing, hacking, sneezing, whimpering sick. For well over a week.

The MS was definitely gone.

It took me another few months of paying close attention to accept it as a reality, but yeah—the enemy had been vanquished. Banished.  Expelled, ejected, cast out.

Like those memory lapses, it was gone, gone, gone.

Did Tom take it with him? Did my physical dreck leech into him and die along with his poor, cancer-ridden body? Did his soul, knowing he was about to shed his corporeal mass, suck it from mine?

Okay, so this isn’t the last blog in this series.  I guess I have one more to write. But not now. It’s Sunday, the only time I have to visit my parents. Back anon.

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.”