Mom

It’s wonderful to be rid of the extra fifty percent boost of Effexor that my body “was unable to tolerate.” The latter is shorthand for constant shakes, crawling out of my skin, and magnified fear. No, I wasn’t able to “tolerate” that.

After the initial euphoria wore off as the dose was reduced back to where it did me some good, I’m still stuck with the problem that made my psychopharmacologist raise it to begin with. I’m sad again. No, sad is normal. Unpleasant, perhaps, but a normal human feeling. No, I’m talking about nagging depression. We’ve stabbed and shot at it with poison arrows (with all the psychotropics in my “If depressed, please open and follow directions” satchel) but the damned beast refuses to die.

Now what? Beats me.

I’ve recently switched bronchial dilators. New drugs that are delivered three times a day from a nebulizer. Bless my allergist. He guessed right. (“Guessed” because the diagnosis was done over the phone.) I was suffering coughing spasms. The new coughing “pearl” I’ve been taking seems to be working. Very few coughing jags. Cepacol seems to handle the rest.

Rachel, my sterling masseuse said I had the best massage yet meaning I opened completely allowing her to work. I’ve never done that before. Opened up like that. Like a cooked clam. Duh. Of course I feel like shit. What’s beneath all the layers she had to go through except pain, depression, and anger. I most definitely am keeping the duck and the uber-Scandinavian for Journey to the Center of the Earth: The Final Mission. I’ll be wanting company confronting those demons all by myself.

I had an idea as I lay on the table. Rachel: masseuse by day, Iron Hands by night. She’d make a great superhero. I need to find the right roles for Tamar, the best P.T. on the planet, and Laurie, the magnificent chiropractor. Rachel was completely down with it. I’ll tell Tamar tomorrow when I see her. It’s great to have characters while lacking any sort of storyline. Just like the grand old days of the Internet boom when venture capitalists threw money at anything with the name internet in its title workable business plan or no. I could certainly understand if someone found my writing tedious and Since When so bad that the agents have to stop giggling when they each send me a uniform, Thanks, but no thanks.” But no one can ever accuse me that my characters are filled with air and nothing more. Well sure, anyone could say this, but I’m completely confident they’re wrong. But I actually believe, especially with the guiding hand of Rich (who put me in his end-of-year letter! I’ve never made it to one before! Thank you! You are just plain remarkable, young man) it is pretty well written. So there.

But why the hell can’t anyone stop my nose from constantly running like a fucking faucet? I’m told allergy shots are too dangerous for one with such crapola lungs. Oh yeah, I can use Spireva with its clever “drying agent.” Perfect, no? Yes, if you prefer mucous the texture of glue and stuck to your throat and vocal chords and rib-breaking coughs (no kidding) to try and move it from where it has decided to rest in my innards like in a hammock, most likely. Who wouldn’t? (Will I ever see a hammock again? In life, photos, I’ve got.)

I recall a year or so ago complaining that I felt like shit all the time. And what I was told by those close to me, “Hey, you don’t know how you’ll feel in a year.” That was meant to give me hope. Because in a year, how could things not be better? I don’t have a degenerative disease, I exercise every day and am assuming no upper respiratory nonsense is percolating, why shouldn’t I feel a little better?

No, no sweethearts. This disease doesn’t work like that. I haven’t found any logic in it. Nor has anyone with a medical degree. Damn it all. I don’t feel worse than I did a year ago, but I feel no better. No one is telling me I’ll feel better anymore. No one is saying, “You never know how you might feel a year from now” to boost my spirits. God help us if it’s otherwise. But I have been asked to hold on, because a stem cell therapy is in the offing. (Have the researchers moved past small mammals yet?) I suppose I should be heartened that the stem cell community has graduated to mammals, period.

I’m still so damned exhausted that I can’t get up in the morning. The books I read are fat. (This Lindbergh bio I’m in the midst of is fascinating. I’m getting to the anti-Semitic part; I’m champing at the bit.) I have my doll to make. She’s a big job. I can’t just curl up with it and sew away happily with thread and a blanket stitch and ponder her dress where I’ll have to fucking sew the pretty details with yarn. (Yes, yarn again. At least this time I know what I’m in for.)

Why do I care? I care because it was a project meant for me and Mom to do together. I need to make the dolls in the kits she bought for the two of us 1972ish. To be honest, when I looked at the instructions all those years ago, I’m sure I blanched. That’s why the two kits have sat undisturbed in the same place for all these years. They made the move to Manhattan one box atop the other. I knew exactly where they lived. Still untouched but not given up for dead. She (my ‘Indian Princess”) must be made and made beautifully (if I have to stand on my head) along with her buddy “Katrina, the little Dutch girl.”

My mother is 87. She looks great. She’s healthy. I feel compelled to make those two dolls right now. This very moment. Five minutes ago. Their “births” are completely intertwined with Ma. Since When is really her story. Sure I tell the stories of her Hungarian aunts and uncles, but the backbone of the book is the story of my mother at age six-and-a half year wrested (it sure felt that way to her) from a life she loved, from, her magical (it was) home in rural Czechoslovakia to the Brooklyn of 1930. I found as I interviewed her for hours upon hours, I could finally admit to myself how very much alike we are. (You all know of a time in your collective lives when the last thing you wanted to do was to resemble a parent, any parent. True?) Hell, you all may have avoided this interviewing process I went through to get there, (which was loads of fun by the way). Now I’m more than okay with it. No. I love being a part of her.

I know Mom so desperately wants me to live. (And yes, she has said to me, “I wanted so much more for you.” Me too Ma.) She wants me more than alive. I know she sure has no intention of outliving me. For Mom, and for all mothers, I must keep on, because I can’t imagine anything worse than having your children predecease you . Mom. I will not do that to you but you realize, I can’t possibly imagine life without you.

(I’m not shortchanging Dads. The same goes for all of you.) My Dad died at age sixty in 1982. I never had the chance to scare the shit out of him as I scared Mom, Chip, and Doug-every day for eight-weeks plus that I was in danger of waking up dead.*) So I have to live. For Mom, for all of them. And my doll babies have to grow up now. From those intimidating patterns and folds of felt to cuddly, sweet smiling girls just like on the box. As a gift. To Mom. To me. To fill every promise I ever made to anyone and didn’t come through. (These little girls are carrying one heavy load.)

Oh, how much fun would we have had making those two together back in 1972!

Promise me something. Never put anything off what you want to do in life ever. All there is is now. And my regrets.

*I’ve always wanted to use “wake up dead.” I find that expression kicks ass. I can die happy. Or maybe ”happier.”

One Tough Cat

I’ve noticed that I have been living this conundrum for several years to one degree or another (Glass half full…Et cetera, et cetera, et cetera.) While it gets rather lonely stuck up in my fourth floor “garret” producing zero works of art and occasionally getting one or two brilliant works read that were not or ever could be composed by me. Believe me, I realized I had what I thought was an “artistic temperment” (whatever that means) minus any talent of any kind whatsoever. I rationalized my fatal flaw by telling myself that the world needed people like me who can simply enjoy the work of others. So that’s what I do. I adore Maggot Brain, Thomas Hardy, and El Greco. The world needs people to do this or else the art might never be produced. QED: I’m a critical part of the creative process. You need an audience? Give me a holler.

I lock myself in my apartment looking more like a Morlock or some eyeless mole by the day. I have no problem looking like a Morlock. I could always relate better with the Morlocks anyway. Eloi were just particularly like the stereotypical stupid surfer-type dudes for whom I have little patience.

Doug found out a little more about our friend Chip. For the last year or so, he’d been closing himself up- withdrawing from life. He knew there was a terribly dangerous surgery ahead of him with a good chance of dying on the table. He withdrew. I not only understand it, I do it. I know it. I live it. My god, I wish I could have spoken to him, but he didn’t even tell his closest friends what was happening. Like with my darling Cliff, I understood the pain and fear he was living. We could cry to one another. If you haven’t been there, you can’t possibly know.

Goddamnit. Now I understand why my father chose to die rather than subject himself to the vicious chemotherapy that only had a slim chance of putting in remission. We kids saw what those drugs did to him. Within days, this robust, strong man was reduced to a skeleton with skin stretched over it. He didn’t look human anymore. But we kids, when his disease returned, were horrified that he would just let the leukemia run its course. And let himself die. We begged him to try to put the disease on hold one more time. Now he was a grown man, he could do what he felt right. He knew what he would face with that heinous chemotherapy. But my Dad, my incredible Dad couldn’t disappoint his kids. Not his kids. He went ahead with the chemo. And in days that followed, he entered into that shadow world somewhere between living and dying. Two weeks later he was dead. Oh Dad, I’m so sorry to we put you through that again. We couldn’t imagine ever losing you. We saw, but seeing isn’t understanding.

That’s while I’ll be damned if I put myself on the lung-transplant list. I know the hell of this drill, and it’s a drill I refuse to repeat. Sounds an awful lot like my thirteen weeks in the ICU. Thank you Dad. I’m just sorry he had to relive that hell-even for two weeks- for us.

I find that I cocoon myself. I so rarely see anyone. Sure, it takes lots of energy for me to have visitors. (Anyone who has come here to visit came, because I wanted that person to come. No one has imposed his or herself on me. Laura J., Joanie, Bob et al were here, because I wanted them to be. No feeling guilty, okay? You brightened my life. I’m strong enough to say no. And I’m strong enough to say yes, capeche?)

As I have said many times to my therapist/angel, that I can’t burden my friends with my Sisyphean boulder of crap. I say all the time that the only people (besides my mother, Doug, and Chip) I can unload on are the people whose time I pay for: my therapist/angel; Tamar, the best P.T. on the planet; Rachel, my terrific masseuse, and Laurie, my beloved chiropractor. That’s a damned fine group, but this shit cannot be laid on the general public.

Usually when we visit the ill, we wish them a speedy recovery and then talk about life as usual. For me, not only will there not be any recovery, there is not one in the offing. (But they’re doing an awful lot of stuff with mice.) And I reminded Chip that if there were some new experimental procedure, who knows? Perhaps, I’ll never get off the table like Chip Rabkin.

I am stopping right now the specious comparison that many have used, because no one knows what the hell to say to me. “Well, you can get hit by a bus tomorrow.”

Ugh, strangle me please.

Yeah. Sorry. (I really am.) This does not fly. It only upsets me. I hadn't figured out why or how until I started putting it to paper. But here it is: Saying so is dismissive of my illness and all I've been through these past four years. My fears (“Is today the day?”) and all the hell I continue to go through are being equated to being whacked to kingdom come by a bus.

Okay. I’ll buy it. But let's play it my way. You survive the bus accident, you are now limbless (or maybe, your limbs just no longer work), and your heart is fucked in such a way that it cannot be surgically corrected. Transplant? Maybe. As the boys from Pittsburgh said to me over and over and over again, “Please remember, you’re just exchanging one disease for another.” Welcome to my world.

Then maybe we can talk about being hit by a fucking bus. Why do you think Chip Rabkin began withdrawing from life? When you know what’s coming and there’s no chance for a do-over, it’s awfully difficult to embrace life. Life has become a dirty word. Your own personal dirty word. Why bother anymore?

Death by bus may provide you some comfort, but it sure makes me feel an awful lot worse. From my standpoint, that bus sounds pretty fucking good. (“Glass half full…) Boom, it’s done. No, sorry everybody. I live with my near death experience every fucking second of every fucking day. God bless that bus. May it only fly up to the fourth floor. (Please be careful not to hit Chip or the cats, okay?) I may look just fine, but I feel sick every single day. I hate gasping for air which I must do all the time. Gasping creates a panic response automatically. (Water boarding, anyone?) I really don’t like to panic. My throat always hurts. I live with a painful cough. Side effects galore from my high-tech medication. But one stinking respiratory infection, and it’s sayonara kids.

One of our cats developed a hideous cancer. One of those that once you see it, it’s too late for treatment. The damned thing became an enormous tumor on his jaw. He used to tap me on the arm for more pain killer. My poor sweet baby. What a wonderful boy Jazzy was! The vet told us we’d know when it’s time because cats turn inward as they get closer to the end. When I bring Jazzy back to the vet, he is stunned that this is the same cat he saw six weeks earlier. How could that cat still be alive? Because he sure shouldn’t be.

I started balling, “You said, when he’s ready, he’d turn inward. He hasn’t! He hasn’t at all! He still wants to live!” The vet took one more look at Jazzy and said it was time. When he brought Jazzy to the room where they first put him into a deep sleep before kicking you out when they give the Kevorkian injection, Jazzy just wandered around the room checking it out. Just like a cat. Not a dying cat.

The vet sends out condolence cards. This is the first one I’ve ever seen him personalize one. He wrote for Jazzy, “To one tough cat.”

Marijuana Toast

As promised, today was psychopharmacologist day. Given that oxycodone, if it hasn’t rid me of pain (the stuff dulls it down some), has given me a life back, the rest of my drugs will remain as is. What’s really funny is that I had no life to begin with. I guess the good news is that I’m out of the minus column. (You know, I’m afraid I’m really going to regret saying that.)

I didn’t want to fuck with what works. I’m way too close to suicidal to be stupid and try and wean myself off some of this crap now. (And there’s a lot of it.) No, sweethearts, I’m not feeling the least bit suicidal and haven’t since I emotionally recovered from my recent upper respiratory infection. (Put me face to face with death, why suffer longer than you have to blah, blah, blah?) Also, going into the winter is a bad time for me to screw around with mood-altering drugs because, if you all remember I suffer from S.A.D- Seasonal Affective Disorder along with Anxiety, Depression and PTSD. (Knowing that I suffered most of my life from S.A.D. explains so much the crud of my painful adolescence. I understand behavior that otherwise remained inexplicable to me. I feel like I should always have slapped on my person huge gummy red letters, “How ‘bout that!” Not quite To Sir With Love, but that’s as close as I’m ever going to get.) Now, I just sit in front of a light box, and I remain stable. I sure wish I had it back then. (The light box. But come to think of it, the huge gummy letters would have been cool.)

Oh, why huge gummy, red letters?

I don’t know. They just popped up into my head. They feel right. Let’s try and explicate them, shall we? There’s no Bocarde around to tell me my stream of consciousness is all wrong. Which it may very well be. But I’m sorry Mr. Bocarde, you can’t make that determination. Well, you can, but who would listen? Certainly not I. What’s even lovelier (than those big, fat sticky letters) is that I don’t give a shit. And odd man that he is (was? I hope not), he’d probably like that. I think he would also enjoy like this foul blog. (“Foul” was one of my darling Suzanne’s favorite words.) Bocarde loved Suzanne.

How could he not? She ripped apart everything he had us read. Those precious works he found so important and special that he wished to share them with us. He always gave her an A+ because she shred every single point he made about any of these beloved works- like Portrait of an Artist…one rip at a time.

He ate that shit up. Bizarre as you were, you, sir, you were one of the only interesting teachers in the whole goddamned school system. But let’s not speak of such things now.

Huge, gummy red letters. Ahh! They’re so perfectly clumsy, awkward, bizarre, and impossible to miss. The adolescent me knew only a few who what went on in my fevered, little brain. (Sorry to say, it’s not all that different from the crap you’ve been reading. Except I confess my tough-guy countenance is pure fantasy. Well not exactly. I hang my head in shame. I’m actually a very sweet person. No one would ever think so from reading this damned blog, but I confess. It’s kind of true. But no matter. This time, I’d be noticed all right. I think that’s kind of cool. Hey, it’s a helluva lot better than a zit the size of Mount Vesuvius. Oh, I’d sure wear my letters with pride. Yo, I don’t consider this humiliating. I find it liberating. My scarlet letters. You know, that is kind of sweet. Warped perhaps, but sweet.

Back to teachers in the Port Washington Union Free School District. One day Mrs. El Kadi who, for those who didn’t have the pleasure of her acquaintance, was a mad woman. Flat-out bonkers. One class she announces, “Don’t you find it interesting that the smartest person in the room has the smallest forehead?” I slump in my seat. Shit. The class is looking around. Obviously, they can’t discern forehead size like Mrs. El Kadi. Finally, she breaks the suspense and points to the back of the room. At me. No one in the room gives a shit. But I’m mortified. What was this woman thinking? Who said she was qualified to teach anyone anything ever? Good old Port giving the enfeebled or just plain mad a chance to live a normal life.

Back to me and the present. After the visit with the psychopharmalocogist, Chip made an appointment at my behest with the Heebie Jeebie Lady chiropractor. Oh how soon they forget! My goilfriend the doctor recommended her because she was “a good practitioner” and right in the neighborhood. My beloved chiropractor is in Washington Heights. Among weekly visits from Tamar, the best P.T. on the planet, Rachel, the fine masseuse, and Kristen my angel, my therapist who comes twice a week, I’m physically unable to make the trip up to Washington Heights to Laurie, my darling chiropractor. (It ends up about an hour each way.) I do miss her terribly.

Besides the screwed up back (which I actually think is responding to all the attention paid to it), my head and neck decided to get in on the fun and flip out too. Sons-of-bitches. Here’s where the Heebie Jeebie Lady comes in. Since she stopped coloring her hair, she doesn’t give me those same heebie-jeebies she had years ago when first saw her. I knew I needed to see a chiropractor and fast. I really was desperate. ) With each passing moment, it became more and more difficult to turn my head left or right. (Besides being rather restricting, it was painful as all bloody hell.) C’mon, don’t I already have enough on my “plate” to contend with? It doesn’t work that way, does it?

But as she was on all my past visits, she is a fine practitioner. She’s good too. I have a head and neck back. You really don’t know how much you’d miss them if they flat-out went cuckoo on you. Not crazy. Loony tunes I know intimately. No, that they just don’t work. (I can’t even imagine what stroke patients go though.) Let’s just say you miss them an awful lot. Now, they’re behaving themselves, and I know have a chiropractor in the hood if I need her again. I think she has a new name. From now on, she’s “The Good Practitioner.”

Flattery will get you everywhere, even when you’re dealing with lumps of flesh. Oh they know. Yes they do. They just remain impassive as always. Slowly, but surely, they poke up their little invisible antennae and if you coo just right, they’ll cut you a break and stop leaving you in agony. It’s a subtle cross between love and diplomacy. Difficult. But left in the right hands, they’ll- the lumps of horrifically painful flesh - eventually cut you a break. And the oxycodone sure doesn’t hurt.

Even if it may be making me queasy. (Damnit!) Hello marijuana toast! (A most beautiful and often necessary invention.)

The Wonders of Prostitution

So what’s next? I’m a teary mess post massage. The damn thing not only helps a soul from physical pains, it also often purges toxic emotions. So I’m a teary mess. And this is with a tranquilizer. (Yeah, let’s fuck around with my medication now to resuscitate my sex drive. Not a chance.) If I insisted on making changes to my medications now, I’d being a fully-functioning woman except for one teensy, piddling fact also I’d be a corpse. But boy, could I get it on! (If I could.)

I’m teary under the skin. I need some honest out and out sobbing. I think I have what to release, but I can’t imagine how awful it will be the day subconscious me decides to go for it. Yes, I know that massage is a perfect tool to make this happen. I just feel so damned sad. I hate sad. I don’t do well with sad. I get morose. Morose is bad.

I suppose all tearyness, sadness and such means is that I may be ready to handle the truth. (“You can’t handle the truth!”) I look at the photo of the girl (really the middle-aged lady) on this blog, and I don’t recognize her anymore. (Chip took the shot fall 2006. I was 44. Sounds middle-aged to me.) I have an idea what I’m not anymore, but I’m really clueless as to what I am. Anyone? Scared, miserable (to live in, to be with). Sounds about right.

I can’t even dream of a healthy desirable me. Aprés massage, I crashed on the couch as is my wont post-massage. Ninety minutes of being beaten up, I think I deserve it. During one of those moments when you’re not quite asleep and not quite awake, I dreamt I was being sexually molested. In a public restroom no less. The molester was some anonymous white guy, middle-aged, and wearing a suit. He derived pleasure by sticking his hands into his victim’s underwear. The horror of the “twilight sleep” dream is that I liked it. And looked him up for more of the same. Now, we’ve all had sick sex dreams…and if you don’t fess up to it, you’re kidding yourself. But I thought this a pretty sick one given my current state of mind. I don’t think I could dream about being desirable anymore unless it’s somehow twisted and demented.

As I lay one the couch in my half sleep, I recalled a movie I saw umpteen years ago. A Russian woman and her son fly to the U.K. where her fiancé supposedly waits. He isn’t, and she’s stuck in immigration limbo. In some self-contained little town, and no way out. An British “entrepreneur” asks her if she wants to do some porn for the web. She’ll be paid handsomely for it. She’s desperate for money. (As are his other actresses in immigration hell.) She agrees. The entrepreneur has her dressed like a little girl, and I guess she’s supposed to do lurid things in front of the Web cam. Instead, she just bursts into tears and is unable to stop crying. I guess after a bit more of this, she is removed from the stage.

Weeks later the entrepreneur tells her he’s been looking for her for weeks on end. His phone calls, his emails have skyrocketed. Money poured in. “Where’s the crying girl?” She didn’t have to take off a damn bit of clothing. She just had to sit on the bed and cry, and the crowd called out for more. Bless the entrepreneur. He gave her a fat wad of money, “You earned it.” And told her to find him if she ever changes her mind and chooses to resume her acting career. (She didn’t.) As I lay on the couch half conscious I thought, “Hey, I can do that. There must be scads of weird men out their who would be more than happy to jack off to a woman hooked up to machines with a mess of tubes. During my light dozing, this seemed to me to be sensible and perhaps even lucrative to boot. And I’d know I’d be turning some people on just as I am. Not as I was. That’s the crux of the whole problem. I need to be desired as I am now. Period. Anything else just doesn’t cut it.

As I’ve mentioned more than once, for the most part (I can’t really speak for all), tubing isn’t sexy. A cousin of mine said that he used to take a relative who suffered from Lou Gehrig’s Disease (the actual disease, not the one from uber-concussions) to a brothel, because that’s the only way he was ever going to get laid. I thought that very sad, but also very resourceful.

I still think that the people I speak to most about my crapass health (besides my poor Chip who hears everything. What an incredible man for every reason you can imagine) are the people I pay to spend time with me. My fantastic therapist around whom the earth orbits, Tamar: the best P.T. on the planet, Laurie my darling and wonderful chiropractor. I love them, and I think they me. Tamar, the best P.T. on the planet, are on our way there. In an odd way, on my side, it’s not a far cry from prostitution. I’m the john. Get it however you can. Even if you have to pay for it. “It,” in this case, is a friendly face, fantastic advice with a pair of ears trained on you. And there is no guilt involved, because it is, bottom line, a transaction. (Ooh, this is getting funky, but I’m on to something.)

By jove, I think I just had a tiny epiphany sitting here at 3:20 a.m. Maybe they’re (my fantastic therapist, Tamar: the best P.T. on the planet, and my wonderful chiropractor) who I need to focus on during my moments of doubt regarding my usefulness on this planet. And my right to take up space on it. Sure I pay them to care for me. But it doesn’t mean we haven’t made real, honest-to-god human connections. Granted, I’ve been wrong about this kind of relationship in the past. (Pay to play.) The over-the-top magazine reps who are always ecstatic to see you, hang on to your every word, and then drop you like a hot potato when you switch accounts. And a couple of them I actually thought had become friends. Oops. But I think I can recognize love when I feel it. (My god, I most certainly don’t feel that way about any of my doctors.)

Let me continue to love them back for all they give me.

And boys and girls, how the hell can I let Chip down? My husband. The man who kept me alive as I teetering on the edge in the ICU. And has given me more loving care than I deserve for all the hell I put him through How can I fail him?

Love the man who loves me more than anything in the world. The man I was smart enough to marry. Just love him.

Perhaps if I follow my advice, I can avoid seeking out sexual molestation in public restrooms or becoming a worker ant in the Web cam porn industry.