Sunday, May 8, 2011
Tuesday, May 3, 2011
Thursday, April 14, 2011
I have been hanging on by the tips of my fingers. I don’t quite know how I got here, but I did. I have one insidious disease, and at no time has any doctor ever told us what to expect post-hospital. They’re just thrilled they can shove me out of there alive. (Day’s over. Let’s have a drink.)
Yes, I survived Hodgkin’s Disease like a trooper. A cancer with an unheard of ninety-eight percent survival rate. While technically I’m alive (I think, to join that two percent for real, I’d have to have truly dropped dead as opposed to faking it which I’ve been doing for the past four years. Yeah, yeah, yeah, I know. Dead people can’t count. Because they’re dead.) I believe I fell into the bin of two percent of patients instead of sailing through this mere trifle of a lymphoma.
I often forget I had cancer.
After four years I can tell you it could be worse, and it is, “my breath of sunshine” ENT becomes less and less cheery each time he sees me. He did give me a back-ended compliment yesterday though. He told me he had expected me to look much, much worse than I had when he first saw me many light years ago. Given how miserable last week’s CAT Scan is, I should look like a piece of shit.
To that, I’ll say to him and any others with similar expectations,” Au contraire.”
He took back his promise of permanent stents. These were to solve the hearing problem I’ve been suffering for months now. Instead, he put in another set of impermanent stents back in my ears knowing that they will fail, but may improve my hearing as we choose A HEARING AID. I have no more than the usual amount of hearing loss. Permanent stents require surgery. Surgery, infection. Infection, GAME OVER. Thanks for playing. Please follow lights at end of the theater where our ushers will tell which way you exit the building. (“For You, you take the BQE over the Kosciuszko Bridge…”)
So I ‘m also a member of the small group of people with complications that doctors’ usually find are a snap to fix. (I have four practitioners who come to my home to treat me in various and sundry ways. It doesn’t do anyone any good if I can’t hear them. It’s like there’s a scrim between me and the rest of the world.)
But that’s nothing. There’s The Skype of yesterday evening. Just me, Chip, and my psychopharmocologist. Nice and cozy.
Background: My drug-combo isn’t good. Not at all. I’m either tired or frightened. The sleepiness has to be my clever means of escape. Who needs therapists when I know myself so very well? Me, you toadstool.
I wanted to be crystal-clear to my psychopharmacologist about what was going on with me
Look, I’ve been doing this for four years. And it’s about all I can take. Nothing is pleasant. Nothing is fun. I feel sick every day. I’m petrified to exercise, because it makes my choke and gasp for air. I think I’ve had more than enough. And for me, death is my most appealing course. I want to die.
Was I clear enough?
He was really quite the gentleman and gave me props for four years of hell. He said he still wants to find a way to allow me to have some joy in my life. Lovely man. I was impressed. (I guess after all those years doing exactly this, he better be damned good. Otherwise, his office would be surrounded by piles of dead New Yorkers. Not a good look.)
My talk therapist who is one smart cookie. She said, “What you need are girlfriends.” (They could be boys too.) Yeah, like I used to have when I was I kid. When we shared everything and all. Okay, I don’t have that kind of staying power anymore. We’ll start with fifteen-minute visits and go from there. Whaddya think?
(Better than a visit to the theater.)
(Better than a visit to the theater.)
Tuesday, April 5, 2011
I wrote this post about a week ago.
Fear. I am paralyzed by it. I think I’m going mad. I don’t want to see anyone. I don’t want to speak to anyone. I want to be Bubble Girl who has access only with mother, brother(s?), and my honey. A Seinfeld episode included Bubble Boy. Bubble Boy was an asshole. A real a shitheel. I‘m working on my asshole and shitheel parts. I want to be just like Bubble Boy, I have what to be an asshole and a shitheel about. I don’t do very well with those parts. But I’m a whiz at paralysis, shame, fear and loathing,
When my P.T., the best P.T. in the whole entire world, watches me as I cough and cough and gasp for five minutes or so. (This was a good day. You should hear me cough between every single, fucking rep on a bad day.) I said to her, at least you’ve seen this. You get it.
But she hadn’t. She had never seen a good Fran “Time out, all! Just give me whatever the hell time it takes to get my breath back, could you please?” I know I do my damndest not to cough excessively if I can manage to do it. It’s like stuffing the snakes that pop out of the can back in. There’s probably some exercise value to making that work over and over again.
I know she knew how rotten I feel, but I think she saw for the first time the depths of my rotteness and can’t be far from home.
Because when I go into my daily gasping, people who don’t know, don’t get it, become frightened. “Are you okay? Do you need more oxygen?” And they always look more panicked than I. I had to explain how the remainder of alveoli work to my oncologist/internist, ENT. I received totally incorrect information from my original pulmonologist. There are very few people with such severe case of ARDS who survive. Lucky me. I should get a ribbon or maybe even a medal for this.
Because I have so many fewer working alveoli, I can’t get oxygen in my blood fast enough. You can bathe me in oxygen if you like. It doesn’t make a whit of difference. I can only metabolize what my ruined lungs can metabolize. Period. (So the crazy thing is that I have slight pulmonary high blood pressure.)
Regarding nothing yet not. I just listened to Robyn Hitchcock sing, “Because he wouldn’t make love to a loaf of bread unless of course it were in his bed.” My thoughts exactly.
My eyes are always wet. I’m not experiencing an allergy. I still have a toe touching the ground that allows me to tell the difference between sad and an allergy. You’d think I’d want company, wouldn’t you? I am impervious to most of what goes in the outside world. I wish I still cared about everybody else. Oh no, I wish you all happiness and good things. They just won’t ever happen to me. That’s pretty hard to take.
I don’t see my ever accepting my situation. It’s hell on earth as it is and can only get worse.
Hey, I’ve lost ten pounds. I don’t have ten pounds to lose. But I don’t want to eat. My eighty-seven year old mother has taken to making things I’ve always loved. (The best damned chicken soup with homemade noodles. Kosher for Passover even.) Smart cookie, that one. And a damned fine cook to boot. Ma, I salute you. She sure as hell didn’t want to see her baby go through this. I think someone told me that she said way early on in this mess, “I wanted so much more for you.” This from a woman who lost her husband and mother within months of each other. (For real.)
Ma’s had it with this shit. I wish that were enough. When we were kids, and she got really pissed at us for whatever the hell we’d done, she would stamp her foot. It was loud. It was scary. And we, stupid kids that they were, jumped back utterly petrified. I like to think, if Ma stamps her foot, the whole of it, ARDS scars and the Bronchiectasis (gesundheit) would tear ass in fear. While the Foot Stamp was guaranteed to make us quake with fear, we never pushed the envelope. (What else could it do?) I never wanted to tempt failure to have Ma use the Foot Stamp to rid me of ARDS and Bronchiectasis (geundheit), and it not work. (But it would be so cool if it did!) But we all know the truth. If the Foot Stamp were so powerful, my Dad would still be with us. There’s my answer.
Ma assured us that the foot stamp had no power in my pathetic situation. (To this day, if she stamped her foot, Doug and I would turn in to jelly.) Are we not pathetic?
Actually, I didn’t have anything to lose except my poor beautiful quadriceps that I worked so hard to get. My skinny legs disgust me. I suppose if I took every waking minute every day forever and ever and ever, maybe I’ll get something back working with puny ankle weights. Frankly, I don’t think forever and ever is quite enough time. Too damned bad, Lipman.
To be continued…
Thursday, March 24, 2011
I know I’ve said this too many times and in too many ways. But everyone needs a reminder now and then.
I am not brave in any way shape or form. I’m petrified. Fear has always been my motivation for everything I do. Without it, I’d be off somewhere lying on a beach chair drinking a piña colada. Fear gave me my “game face” when my whole world fell apart.
I used to live in Queens as a little girl. Right by Fresh Meadows in one of those really cute – they still are- starter houses with sidewalks, nice neighbors on porches to visit who would even welcome you with open arms, and a real honest-to-god life on The Block. It was beautiful. There was even a farm a few blocks away and we had a farm stand to pick produce. The farm closed several years ago. There was a plan afoot to use it in conjunction with our old school P. S. 26. I don’t know if it ever got off the ground. But that farm was the very last one in the city of New York.
Our family moved to Long island rather than Jamaica Estates, which was really close by and would have made every single one of us happier. Fall of ’68 was the New York City teacher’s strike and times were ugly. We didn’t honor the strike, and I remember climbing up the steps of elementary school, waving gaily to my picketing kindergarten teacher, “Hi, Mrs. Sammelson!” At least Mrs. Sammelson who never said much anyway, had the decency to look at me like a deer in the headlights.
Other teachers were hardly as pleasant, “Your parents don’t love you!” was one of the epithets I can recall. Now I didn’t see this, but a teacher, I’ve been told, lunged out to me. To do what, I can’t imagine. You try and hurt his little girl; you’re messing with the wrong man. A cop had to hold him back from ripping that woman apart. Well, they got me in and then they still had to go to the junior and senior high schools to do the same for my brothers. We all made it in and out alive and all in one piece.
Reluctantly, in lieu of the lovely Jamaica Estates, my parents decided the move would be to Long Island. And we did. To the edge of Port Washington with a Manhasset address. The basement leaked like crazy, both parents got horribly depressed and so did we three kids. (What choice did we have?) The family lore was,
“Thank goodness Franny so young. She escaped the horror that was Port Washington.”
Well I didn’t. How the hell could I unless I lived in a bubble away from my terribly unhappy family? I played it tough. I can handle it. (We all do what we have to do to get by.) I knew I wasn’t happy. But everyone around me said I was. You see, I learned at a very early age to doubt my instincts. By the way, I don’t do that anymore.
The schools were really nasty. Yes the vaunted Port Washington Union Free School District. Since we were “city” kids, we had to be ignorant and poorly educated. Doug and I were both placed in roughly the bottom of our respective classes completely ignoring the fact that our grades were sterling. For me Mom included an enormous list of books I’d read. No matter.
Doug was made to take a placement test which in the intolerable heat of an August day in the Carrie Palmer Weber Junior High School of The Port Washington Union Free Public School District. The thought balloon over his head must have something like, “Fuck you. I’m not taking your fucking test.” Whether I have the contents of the thought balloon right is irrelevant. Brave Dougie refused to take the test. And as a prize, he was placed in track two with a mess of thug-like people. Lucky for Doug, “He’s good with people.” He managed to become the “pet” of his fellow classmates as he worked himself out of the hole in which the school had placed him.
And the smartest one of us all, Eric, was kept on pins and needles for two years while the grand poobahs of Paul D. Schreiber High School of the Port Washington Union Free School District decided whether to accept his credits from his Queens high school. A week or two before graduation, he was told his old credits were just peachy.
I think it’s becoming clear why I feel as I do about Long Island in general and Port Washington, specifically. I never needed to figure out the rules of play while in Queens. I believe I was born with them. I was happy and friendly. And people responded back in kind. That was it. Simple and got the job done.
I had really big problems with Port Washington, and I think an awful lot of us had similar social issues. That’s why it’s so amazing to find such lovely people now who were there all the time.
So, fear has been a close friend of mine for a long, long time. Helped me be one of those “high achievers.” (Ugh.) And now, I go through my exercise and walking rigmarole, because, I’m more frightened about what will happen to me if I don’t do it. Except my newest hell is that I’m in a panic about doing any exercise at all. I’m so afraid of gasping for air and not getting it back. I can’t win.
Thank goodness, the psychopharmocologist recommended more Klonopin when I flip out. It’s something.
Monday, March 21, 2011
I’m so glad didn’t write to all of you last week. Trust me, this one is way cheerier than what you would have seen.
I had two episodes of not getting enough oxygen which put me into the gasping for air abyss and thinking that I can’t imagine an uglier more painful way to die. As soon as your body realizes it’s not getting enough air to breathe, the body and hence the human caught kicking and screaming within that body, are in automatic Panic Mode. Under W.’s color-coded terrorism warning system, this would be Code Red. Everything seems to be hooked just perfectly. What the fuck is going on?!?
The first was an oxygen line squished in a doorway. This scared the crap out of me. A mere crimp can send me into a paroxysm of hysteria. Then on Friday in the bathroom…(why do these things always take place in the bathroom? Because, you silly thing, we (the gods) are in a festive mood: let’s make the situation as miserable and as embarrassing as possible…isn't that fun?) I’m sitting and I cannot catch my breath. I cough. Over and over and over again. (The kind that used to break ribs until my Pecs of Persuasion developed sufficiently to allow the bit of lung that I’ve got to remain functioning. Now they just do evil things to my back muscles. I can handle those, piece of cake. Ha!) Chip hears the commotion and checks to see if the air is going through all the tubes on my tether. So what the fuck is going on???
He jiggles the bottle of water into which my oxygen passes before getting to me. Without this little step, I’ll dry like a raisin.
Suddenly, I’m getting air. Who, beyond Chip, will think of doing this? I need not only a babysitter, but a handy babysitter at all times. No joke. I’m off in Panic Land, so I’m entirely useless. I guess whoever’s here calls 911. What other option is there?
These frightening episodes exact a toll. There’s always some of “I don’t want to live anymore’s.” But it’s what happens to me every day that makes living such an unpleasant thing to do. I’m petrified of walking and exercising—the two things I must do if there ever is treatment for this terrible disease. For it is terrible. Being a shut-in is terrible.
My fears are sometimes insurmountable. Those are my “days off.” When Franny is on overload. But a constant these days is not wanting to eat. (The really slow and painful way to die…starve yourself. Big move Lipman.) True, that I’ve lost muscle mass is to be expected, but I’ve lost nine pounds since, unlike Humpty Dumpty, I put myself back together again. I ate last night. Not a lot but enough.
Mom and Doug were over. I couldn’t handle it. I couldn’t speak. I couldn’t take part in any conversation. I went to bed mid-evening. The night before, in a fit I had while only Chip was around to watch. I threw soft objects in the living room.
I really wanted to break every breakable I could. This took incredible self-control on my part. Chip said “What do you what?” (Attention, for one.) Me: “I want nothing! I’m nothing!” Bless that man, he put me in a bear hug. (Everyone should have a Chip. Trust me, you won’t be disappointed. You can’t have mine. I found him first.
I do find it hard to be part of this world. Especially as I’m not a participant. I imagine you might say I’m more of a participant with this blog than I was when I was alive. Interesting thought.
Oh, I realized I had read Catch-22 recently when I reached the last page.
One more thing. I finished the Springbok “Indian Princess” doll from the kit my mother bought for us to make together way back in 1970. She’s 16 ½ inches tall. She looks lovely. I’m now sewing the body for “Katrina,” the little Dutch girl. This is the second kit my mother bought. It broke my heart thinking she might not be here to see them (Or hell, I might go before they’re done.). Like an idiot, I found two more on Ebay which I promptly bought. Asshole.
Saturday, March 12, 2011
These stents don’t do shit. It’s not only embarrassing when I ask all my therapists, “Could you please repeat that?” over and over and over again. If I can’t get it all the second time, I just nod. These are extremely problematic when spending my two-hours a week with my talk therapist. If I can’t hear when she’s telling me, what good is it! Please tell me I’m in a nightmare and I’ll wake up soon.
I woke up from a nap the other day with such a start. After I told myself (thought balloon) that this is it. I was beyond demoralized and sat up, bleary-eyed. I had never allowed those particular words to enter my mind or- good heavens- (in that order, otherwise I do use the word themselves quite often, actually) to enter into my conscious mind. To quote Group Captain Lionel Mandrake in Dr. Strangelove on learning that the United States had entered into nuclear war with the USSR, “Oh hell.”
The impact the prospect of nuclear suicide just about equals this is it.
I will not get better. Ever. Years pass. And I’m promised help in ten years (“So hang in there!”) no matter how many have passed when this all started. Lewis Carroll in Alice in Wonderland says it best “Jam tomorrow, jam yesterday, but never jam today.”
So fucking much has been taken from me. Please, not my hearing too. All I need are allergy tests and the appropriate shots. But my allergist won’t take the risk with my piddling lung capacity. I’ve gone beyond the EpiPen. Doesn’t the U.S. give out awards for shit like that?
I’m reading Catch 22. I’m not sure, but I think I may have read it a couple of years ago. Since my short-term memory is such an abomination, it’s a plus to be able read books over and over again and have no wind of it.
I have to assume that I’ll have a really heavy depression after every visit from my lovely masseuse. (Because, lo and behold, it happened again.) She must have the means of getting close to the spigots whereas I’m totally clueless. It isn’t at all fun, and I hate putting you in this position, but Rachel, look at it this way, you’re doing me a mitzvah. No one’s come close to doing what you do.
Charlie, your comments go straight to my heart and each time I read them I get weepy. (But no, they’ve never sent me into anything close to a massive depression, so, please don’t take that as a reason to stop commenting. When you feel like it, please do. They’re important to me. I know you get it. And how.) Thank you.
So this is it. Oh hell.
Monday, March 7, 2011
My last appointment with my therapist this week was highly unusual. My did I suffer- about what to do about what I figured would be a likely break with my brother (!) and his family. (At least for now.) This is assuming I chose to be a hard ass about the vicious, interminable email I received from my sister-in-law. I’ve never been hard ass. This is virgin territory for me, not only sticking up for myself but also telling someone to shove her cruelty up her ass.
I actually had a moment of zen. When I knew that I had to shake off her idiotic nonsense. She and my brother are poison to me. I can rip myself apart all by myself thank you. I felt confident and relaxed. Big move, Lipman.
In my first life, I tended to float with the breeze rather than risk confrontation. Not to say that I had no opinions. I always had opinions except for years and years I didn’t believe them to have any validity, so why voice what was clearly wrong? So I floated. But I didn’t like it. Not one bit.
In another world, I’d still be a good little girl and take the punches from my sister-in-law. I could always take punches. ARDS and Bronchiectasis (gesundheit) are two powerful diseases. They taketh away way, way too much, but they giveth back one nasty, fantastic chip on the shoulder. No more floating. No more acquiesing. Late, but better than never, I have finally learned to assert myself. (At least when pushed to the extreme.) I won’t take shit I don’t have to take. I have to take my limited lung capacity. I have to take funky bowels that have no business being funky since ARDS and Bronchiectasis (gesundheit) attacks lungs lungs only. So lay off my gastro-intestinal tract please.
Then why I am I so completely, out of control tonight saying over and to myself, “I can’t do this anymore, I can’t do this anymore?” Or, “I have no life.” That’s actually kind of true. But how can I share something so horribly bad with anyone? I know there are people out there who love me, but how to explain this…? Really what does a visitor say to me, “Feeling any better?” Well, of course I don’t. And I won’t. How does a person make a conversation with that? I’m stumped. I guess that’s why people attend groups with other people in the same infernal boat. It sure makes the initial explaining part move quickly without any, “What!?” “Huh!?” “You’re kidding me!?” We can get right to the nitty gritty (see below). No one has mind-blowing thought balloons. I don’t much like mind-blowing thought balloons of this kind. I can’t imagine anyone who would. My sister-in-law?
Just last night, I had an episode straight out of the August 25, 2010 (Hide the Knives!) post without the Exorcist-worthy projectile vomit. (Too bad. That was cool. And I tried to be so polite about where I’d leave it. Why add a stranger’s vomit to somebody else’s pathetic, little life? It just didn’t feel right to me.)
The gist of the problem are the times when I’m in desperate in need of air. (Like the gasping I do after I take my walks in the apartment hallway.) And when in dire need of oxygen, my body (as would anyone’s) tries to excrete everything it can.
To save me from suffocating? Nah, it has to be a fear response. I don’t know where I read this but in Auschwitz, many of the people chosen to be gassed right off the bat excreted everything out of every orifice where it was possible to excrete anything while on line awaiting their fate.
My original experience of that fun sensation of “mega excretion” was just after a chemo treatment. In all his thirty years as an oncologist, my doctor never had a patient who responded to receiving chemo like that. Yay me. The usual time it should take to begin feeling the chemo is four hours or so. And that doesn’t include excreting anything when not planning to do so.
But last night. I always spend an inordinate time in the bathroom before going on my hall walks to empty my bladder as much as humanly possible. On occasion, where I get back to go (do not collect two hundred dollars), I feel close to losing the drop or two that had refused to exit my body. Slowly, my breath returns. All is well. Last night, post night time ablutions as I put on my extra-sexy Lanz of Salzberg flannel nighty just seconds from hopping into in bed, I sat down on the grey bench meant to help the disabled get into the shower, (we just use it as a bench). I started to pee. I don’t know why. And as during the post-chemo episode, once the excreting starts, there’s no stopping it. I screamed for Chip to get the Clorox wipes and a washcloth for me. As I’m always very thoughtful in moments like these, I hiked up the oh-so-sexy Lanz of Salzberg flannel nighty so not to soil it. Well, ladies and gentlemen, the nighty remained clean. As did the bathroom rug.
There must be a million things I haven’t yet thought of to make me desire to lay down and die. But as soon as they happen, you can bet you all will be the first to know.
One tiny thing. I’m very deaf again. I now have stents in both ears, and they aren’t doing shit. They were put in earlier in the week, I think. I’m not holding my breath on these. Permanent stents next? And why does mucous fuse itself to my throat which makes walking the halls a fearful event? (Chip has found blogs of very angry people who can’t believe that the medical establishment has nothing to remedy the situation. It’s true. There’s nothing except Cepacol lozenges which don’t last very long, but they’re all we sufferers got, so no excessive complaining. And I get to use a word lozenge that isn’t required all that often. !!! I just love the sound of it: lozenge. Beautiful. It’s a shame that Cepacol Oral Anesthetic/Analgesic, instant acting lozenges don’t taste as good as they sound. They’re kind of nasty. ) How long will it take to be able to breathe again? This qualifies for excitement in the Lipman-Sleeper household.
P.S. Karen, what other Karen do I know? I am apologizing thirty years too late for being such a miserable correspondent. I didn’t do the right thing. You deserve the apology so fuck you and accept it whether you like it or not. I (love you, and I miss you terribly, by the way.)
Wednesday, March 2, 2011
I’ve been doing a lot of thinking over the past week or so. (FYI, don’t ever waste your time doing this. About anything. All that thinking doesn’t lead you to enlightenment. I’ve learned it can only lead to trouble. So naturally, this week I managed to upset myself more than if I had stopped thinking altogether and played Maggot Brain ten times in a row. (I find it soothing. Go figure.) My brain began getting out of hand.
Stopping function of the brain in its tracks (if it had tracks to stop) can be done. With less effort than you imagine. A bit of thought will remind me that I’m not responsible for the problems plaguing humanity. What a stupid thing, wasting a week worrying myself about other people’s insanity. Specifically, worrying about my brother and his family who went apeshit when I accurately described my sister-in-law as an extremely unpleasant person. Comparable to a shrew.
If I had taken simply trashed the unintelligible email she sent on over to me last week (me?!), I’d end up in the same place I am now minus all that lousy hurt. That’s what thinking gets you. Feeling like shit. So don’t do it.
To my dear family in Texas, do any of you realize that you’ve created a cozy, bizarre existence? Of course you don’t. No, my honey of a sister-in-law, you saved poor Eric from the evils of the Lipman family. Just to make this crystal clear, the New York Lipman’s are still the coven of devil spawn (thank you Allen). To be completely honest, we always have been and we rather like it. (Perhaps this explains my love affair with Rosemary’s Baby.) Better yet, we really like it this way, so we’re not going to change. That you can bet on.
This is all so simple. I should be dead. And if I’m terribly unlucky, I could get a stupid bug, and it’s wham bam thank you ma’am. Pay when you pick up your urn.
Don’t you see? Don’t waste your time with all this crap. I refuse to play these mean games that you all seem to like to play. They’re part of your innards, aren’t they? But they’re not part of mine. I have twenty-four percent lung capacity. Medical science has no treatment for me. I work my ass off to maintain physical strength on the sheer chance (My friend Mike the microbiologist says it will happen soon. A decade at the latest? Anyway, he ‘d rather I not off myself with treatment on the horizon. I hope he’s not just blowing smoke up my ass.)
And I take lots and lots of drugs to avoid despair. I will do my damndest to live as serene a life as I can in this apartment. I have too many demons of my own to wrestle with. Please take your dysfunctionality elsewhere. It is not welcome here.
See, why did I get myself all worked up over this? I knew what I needed to do all along. Like Dorothy. (I, too, already had the ruby slippers.)
Stay away from bad shit.
All the Sturm und Drang for that?
P.S. To my niece: you are the only innocent of all these loutish Lipmans. You didn’t ask to be born into this crap. I totally understand if you want nothing to do with me after this most recent tectonic shift. If you ever change your mind, I’ll be here. (Let’s assume I will be.) FYI, Doug is a seriously cool dude. And even better, he hasn’t crapped on anyone that I can think. (Unlike me.)
Back to regularly-scheduled programming next post.
Saturday, February 26, 2011
She demanded that I never mention her or Eric again in this blog.
Now, of course, this shandeh, for which I am now paying for dearly, calling a person such a name must stab my brother in the heart. For goodness sakes, my brother and sister-in-law are each almost sixty years old! Do you think that they may be old enough to deal with a wee bit of unpleasantness from an annoying relative (me)?
And what about me? I’m a loving (and my Eric knows that to be true and Eric, if you don’t, DO, because it’s true) sister who wonders in her blog how her friendship with her wonderful brother could become all farcockteh? I said nothing that came as a surprise to anyone.
Before I became ill, I always was polite (at best) when I encountered my sister-in-law. Post-ARDS, who or what am I holding back for? Oh, I’m not going to go berserk or anything. ARDS doesn’t give me a license to kill. But I don’t have to play a silly game anymore which only makes us upset. Now, we’ll get upset out in the open. I don’t need to get colitis again. (Yeah, long before my current despicable disease took my life away from me, I had colitis. Fun.) I had to learn not to swallow my anger, because all it did was make me sick. Instead, I learned to deal with it. Hot damn! No more colitis! And no more tough guy.
Oh, dear people who are still with me after my long absences, I’m a different person from the pre-ARDS Fran. I want transparency. I want to say what I mean. (Not what I think I should.) As I want all of you to do with me.
My mother’s first reaction to the Mother of all Emails, was to placate Eric, and asked me not write about them (him and her) anymore. I felt like I had been punched in the gut. I said that if I place parameters on the blog, I am tucking my new-found voice into a pocket, never to be heard again. Then, it really wouldn’t make any difference being alive or dead, would it? If I live a life where I have to think, tread on eggshells, each time before I tell you how I feel, what is the goddamned point?
I think I told her that using other words. She is not a blog reader. She has no point of reference for this. She had no idea what the blog means to me.
I’ve said, probably too many times, for me, this blog needs to honest. First and foremost. I don’t care how stupid I might sound. How ridiculous I may seem. If I salient point to make, I must make it regardless how of how it makes me “look.” What’s that? (Especially the youngish looking middle-aged lady with the Hannibal Lector mask. (Hey! I always have a Halloween costume!) And in honor of my belief in transparency, the mask is transparent. Coincidence? Oh, I don’t think so.
I don’t look for ways to be mean. I’m sure I have been, but I really don’t want to be hurtful. (Karen, I know I pissed you off time and time again for never writing you back. I deserve totally your opprobrium. Just so you know, I never wrote back to anyone else either. Love you, sweetie, by the way…) Will you let me know how I’ve screwed any of you, please? (I apologize in advance.) But my sister-in-law has issues. How can I ignore my estrangement (getting fuzzier, a good thing) with my oldest brother?
So I won’t. I’ve had it. This is all I have, and I won’t ever be mean (certainly never intentionally) and I will not use this as a vehicle for passive aggressiveness. Any problems (and I hope there are none because I’m beginning to love you) will be dealt with for real and in private.Just the thought that this blog could be something made ordinary and impersonal makes me feel that that would be the end of me. My connection with all of you in my connection to the world and to life. To hell with my sister-in-law.
Sunday, February 20, 2011
I’m sitting here all washed and scrubbed with a back that still hurts and klonopin that appears to be not doing its job. This is so strange, every single day without fail, about late afternoon, early evening, I get a bout of anxiety. My hands shake. (So no more cursing the yarn as I have a thousand more French knots left to do. Yes, I’ll behave. Like hell…) I’m crawling out of my skin. Right now. It’s just s slight shake, but it comes fully-loaded. I’m nervous. Irritable, unable to sit still. And the disgusting belief that I must be useful. And I don’t have enough hours In the day to do it: walk the hallways, “exercise,” sew my baby’s clothes, write this blog, write the new book which is going to be a bear.
I like bears, but I suppose we’ve all seen either in photos or at the zoo, when they’re pissed off. I guess I expect this writing this new book will either scare the bejeezus out of me or eat me alive. I’m curious myself how this turns out.
French knots on her clothes. Never sew with yarn. Oh, she’ll look great. When she’s done and ready to rock Manhattan. I hope she won’t be too disappointed that she’s a shut-in doll and stuck here with Frau Frankestein.
I am a masochist. I bought two more on ebay. Rosita the some sort of Latina girl and Michi who is most definitely Japanese. The goal: complete all dolls before I’m dead.
That’s a big part of my problem. I think I may have so little time left I must get these things done now.
Perhaps this is one of those tricks like Scorcese’s The Last Temptation of Christ giving me a taste of the hell where I’ll be ensconced sooner rather than later.
If you remember the movie, Jesus is offered a normal life. Gets married. Has kids. He sure looks happy. But no, he doesn’t let himself be enticed by the proposition before him, and he chooses to be nailed to the cross. I could never do that. I guess that’s why I’ll never be in the running to be God’s long-lost (really lost) daughter.
You know what people? It was only after seeing that movie that I understood Jesus’ story. My brother said the same thing. I was in tears when he chose to stay nailed to the cross. I’m Jewish. I don’t know this stuff. That movie showed me how Jesus was special, was different. No, Mr. Scorcese didn’t make a convert out of me. (Especially difficult when an atheist Jew.) But I got it. I felt it.
Isn’t that the point? Certainly in that movie. Make your audience feel what your protagonist feels or at least understand what he feels? I never understood why that movie was boycotted and condemned by some believers. Hey, if Scorcese changed or mangled the story, isn’t this a perfect Sunday school topic of discusson?
Anyway, if you are not of the Jewish persuasion and despised the movie at least you know two Jews in New York found the story very moving. (And we got it!!!)
But if I were Jesus, I’d accept the offer (a no-brainer, really- c’mon now). A normal life? Happiness? I’d accept the devil’s offer in a nanosecond. No need to ponder. You mean, I can breathe again and have a life? Sign me up.
No this is not what makes me a Jew. This is what makes me a desperate, lonely human being who is completely unable to make any sense- no, fuck, forget sense. I am stubbornly refusing to accept my crappy existence.
And if I don’t, I guess I spend the rest of my life in misery. (I’m not feeling the suicide thinking these days. I don’t have a clue why that’s so but it has been sent to the back of the room for a “time out.”)My lovely masseuse, Rachel, will be here later today. To quote Bette Davis in All About Eve, “Fasten your seatbelts. It’s going to be a bumpy night.” I hate going through it. Never the massage (which ain’t fun, it’s deep tissue massage which is not for the meek), only the aftermath. Kicking the rubble.
Saturday, February 12, 2011
This was the most non-birthday I have ever imagined. The stars were aligned, the moon was in the seventh house, Jupiter and Saturn played Ring-Around-The–Rosie, and the Super Bowl (an actually interesting game at that) was aligned with Mars How insignificant is a birthday compared to all this gobbledygook?
I was thrilled. I wanted to ignore the day, and the universe helped me in my duty to myself most handily. My mother and brother came over at dinnertime just as I was collapsing into the couch for a nap. I had a right to be exhausted, I was put through the works by the best P.T. (and I’m not joking) on the planet, Tamar Amitay.
Look, I still don’t think there’s anything to celebrate in my life. There are amazing people in my life (Chip, first and foremost) who take such good care of me and keep me going when I want to pack it all in. The remarkable Tamar, the best P.T. on the planet, Kristen my therapist brought to me by the angels, Sweet, caring Rachel my masseuse, Laurie, my chiropractor whom I miss terribly. (I need these people for mojo. If I’m to have any mojo. I’d like some, I think.) They deserve to be feted. Not I. They humble me. I’ll party with them, for them and love them forever and ever. But no celebrations for me yet. I’m not ready.
I awoke from my nap sometime late in the second quarter and Chip brought me a turkey burger from the joint across the street. They make really tasty turkey burgers, but I wasn’t interested in any food let alone that fine turkey burger.
I’ve been having eating issues as of late. I still slobber over my peanut butter and jelly sandwich. I drool just thinking about it. For me it’s sandwich heroin. After starting my day with choppers blazing, I lose all interest in food. There can be only two reasons this is happened and they’re not mutually exclusive. (Is anything, these days?) One is that I take so much fucking medication, it’s screwing up my appetite. The second is losing the desire to eat is a symptom of depression. Duh.
Instead of real meals, I’ll down bottles of Ensure (on the rocks, please). Eat bowls of cereal. (Cheerios and rice milk. That shit tastes pretty good.) And Zone Bars. All three are quick and go down easy. Problem solved.
All right, there is a third reason for my lack of appetite. Eating takes time. And time is the one thing I can’t rely on. I have too much to finish before I die. (And no, I’m not talking suicide. I’m taking about a quick upper respiratory infection and it’s wham, bam, thank you ma’am. You can pay as you exit. And have a nice day!) I’m being compulsive, because there are too few hours in my day to get everything I want done, done.
I’m rewriting Since When as a mother/daughter story. I have all the pieces in my hot little hands. No, I don’t have all the pieces in my hot little hands. What is this new book about anyway? It took me ten years, before I finally figured out that the original Since When is about. (It’s about loss.)
This too is about loss. I can’t get away from that. But this book will be trying to say what about my mother’s and my relationship? I need to keep rolling this around over and over in my head and create chapters that flow naturally from the immigrant girl and the confused Long Island kid.
I never could figure Port Washington out, but I think I can figure out the crux of this new book. Frankly, I think that figuring out this book is a helluva lot easier than figuring out Port Washington even from my vantage point as an adult. I just can’t imagine why anyone would actively choose to live there. I think the five Lipmans would agree on this though my Dad did find that elusive place he clearly needed away from everything: Bar Beach. Facing those gorgeous smokestacks in Glen Cove. I don’t get it, but the man spent hours there was his New York Times. New Yorker, and New York Review of Books. Go figure.
Back to my problems…I need to get a grip on the story I’m trying to tell. I’m afraid I still may be too close to be able to see it. I have pieces of this book already written. How do they all fit together? And once past that, together in a way that will keep the reader interested from start to finish and cut and cut and cut and make it as good (sotto voce) as the original? (Rich, please don’t think you are any less Spectacular than you are. You amaze me, All the time. Our Since When is sacrosanct. To be self published? I’ll keep you apprised of all happenings. And don’t be surprised if you receive an email asking for your professional opinion about lord knows what. You know I will, too.)
I certainly won’t achieve any success if I write gazing at my navel. My apologies. I have no free seconds. I’m exhausted so much of the time. Don’t forget, I have my Indian Princess doll I’ve been sewing like mad. She’s the one Mom bought for me thirty years ago. I will feel so happy when she’s done. We’re spending so much time together, she’s my new baby sister or new baby or something like that.
And I started a Brian Aldiss (sci-fi) book I should have read eons ago.
I have so much to do before I die.
Let’s get cracking.
(This post started out okay, but I’m sorry if it became a dog post. I’ll try harder next time.)
Thursday, February 3, 2011
I promised a Part II after the last post.
I’m not one to often fall short of her promises. (Being human (I still am), it happens now and again. I like it not one bit when it does.)
Perhaps, the key to this problem is to transform from a human being to something else. (Yes, becoming a beloved house cat is awfully tempting. They’re expected to break all promises. We beg them for what should be our due (snuggling and purring) for the room and board we supply. Yes, I know the truth. We humans are due nothing. Not one damned thing. And we stupid humans don’t seek out a more rewarding companion. (Goldfish?) That is the perfect beauty of being a cat. That’s the point of them.
We, Chip and I, must have shortcomings. Otherwise, why would Conway deliberately turn his back to us when we coo at him and tell him what a sweet, wonderful boy he is? Yeah, I’d like to be one of our cats. They’re bloody spoiled rotten, my sweet little peaches…
This all may be moot. The unshakable depression, like toilet paper on a shoe, needed an alternative to the Effexor that made me truly insane. It’s best when I feel like that to spend the day sitting quietly and/or doing what I consider exercise. Like putting on my sneakers. Do you realize that I actually have to sit and catch my breath after putting sneakers on my feet and tying the laces?
My doubling the Klonopin seemed to make matters better. But I think, with zero evidence to back me up except my bodily functions. Especially brain function. How I’m supposed to evaluate my own brain function is a mystery to me. “Chip, honey, I think I’m feeling that my personality has been disintegrating for the past week.” However, I really meant it. I’m usually precise in what I want to say. I learned early to drop the hysteria, leave room for people to agree or disagree with you. Without the air, most people feel pressured and get annoyed. As they should be. When the fuck did I become the authority? About anything?
In this particular instance, I lost interest in all things, all people; when my darling brother and stepson were over the other day, it was too difficult to follow conversation. (Could you just imagine me at a party?) My toe stayed in the human pool, because I was and remain perpetually weepy. Given the possibility of losing all of myself (can it be so?), this is a very good thing. I just want to have one goddamned out and out cry. Wailing. Rending of clothes. The whole nine yards.
Besides the weepiness, I had a great time watching the hour-long HBO shows leading up to the Winter Classic, and the “post mortem” show. Great stuff. I can also live on a diet of Real Sports. That HBO again. Who knew my needs were so easy?
However, I did have a very real problem on my hands. What sucked royally is that instead of going back to being plain depressed- the very reason my doctor upped the Effexor- I had that horrible anxiety. You know that crap. When you feel like you’re jumping out of your own skin and mine combined that with “the shakes.” Now I have been diligently working on the doll my mother and I never made thirty years ago. I sure know why I didn’t tackle it and her friend then (Mom bought two of the kits), they are for people who really know what they’re doing. But now, this is my new baby doll. (I haven’t made her hair yet. I’m assuming she’s an infant rather than a cancer patient until it’s done.)
A couple of days ago, I had six pieces of fringe left to decorate. After a seriously long learning curve, I’d finally got it. Woohoo! It was late. I chose to leave the last six for the following afternoon.
I can’t tell you how long it took me to figure out how to do the goddamned French knots that decorate the goddamned fringe the first time, but I did, after a fashion. We all know, the lord giveth, and the lord taketh away.
Sonofabitch, I remembered nothing from the day before. Nothing. I looked at those fringes as if I had never seen them before. (Fuck, I’m in trouble.) It took a long time, but I figured it out all over again. There was zero carryover from the day before. I’ve noticed other weird brain functioning problems post ARDS nightmare, but this one was the worst.
Okay, okay. I got it now. I picked fringe number two. I looked at it as if I’d never seen it before. Holy shit, there was no carryover from five seconds ago. What the fuck is going on?
This happened five more times. For each of the fringes I had left to decorate. I was completely unable to extract anything I had taught myself on that day’s fringes let alone the ones I had completed that day before.
So if any of you tell me something, I’m warning you all right now, there’s a damned good chance I won’t remember you spoke to me a moment ago, And about what, pfft, don’t be ridiculous.
I don’t know if I have brain damage. If this is the worst of it, I guess I emerged from hellhole number one, one lucky bastard. I’m confident I don’t have Alzheimer’s. But no wonder Alzheimer’s scares the bejeezus out of all of us.
Being cognizant that my brain is behaving as if it’s turning to mush is paralyzing and frightening as bloody hell. Hey, I’m on tons of medication. This could be screwing with my brain. C’mon, the drugs are supposed to screw around with my brain. They’re just not screwing around with it correctly yet.
Dr, Ira has addressed the anxiety issue and I’ll need to assess my brain function (and shaking and creepy-crawlies) and whether the new stuff is sucking the remnants of human energy like the Miele vacuum does with all that cat hair. I’ve had this perpetually running nose. It’s too bad these new pills don’t come with a hepa filter.
But I do think it’s funny that the patient is, in effect, running the funny farm. Even though I’m nuts, I’m the person the doctor relies on for symptoms and interesting new funky bits to decide which medication should make me sane.
P.S. These posts are a wonder. I find I very often I think of a word like “what” but instead type something like “wagon.” My brain wanted “what,” but my fingers stubbornly insisted on “wagon.” I often leave whole words out of sentences. Important ones like nouns and verbs. Sometimes they’re easy to fill in when I reread this mess. Other times, I’m as stymied as anyone reading the incomplete sentence. Please be patient when you bump into one of these. Thanks.
Monday, January 31, 2011
I am incensed. Incensed. Which is a very good thing as this is as much human feeling I’ve had in a week.
No, I did not have the divine gift (for that is what it should be) to experience life as a cat. That would have infinitely preferable. How such quiet little mammals can be so damned persuasive is a mystery to me. They give you these hurt expressions all the time, and we slavishly 1) cuddle them more. 2) feed them more, 3) pick up and put on lap, 4) talk to it in baby talk because baby talk appears to relax said cat, 5) give it a treat, 6) brush and comb cat with the luxurious coat, but it’s never enough even if you spend the entire day working on it, 7) put cat in your bed where it promptly deigns to give you a tiny corner without blankets while they manage to take up the rest of the whole damned thing.
But we love them.
But, no I haven’t been a cat this week. I think I’ve been a shadow of my former self. (I mean I’m already a shadow of my former self, but I’m wispy. Partially transparent? And I don’t mean that I’m compelled to show all. No, I mean transparent. I said to Chip last week, “I think I’m disappearing.” He didn’t much like this one bit.
I wanted to see no one. Ever. I didn’t want to do anything with my time. Ever. I certainly had no interesting the internet. Woohoo. I really failed to see the point of any of these things. And if I continued to fade away into the ether, who besides my immediate family would notice? Not for a long while. I’d be like one of those mummified corpses that are found time to time. (Either that, or a really stinking corpse, and one of the doormen would be forced to check out what was going on in 4R, because 5R was really getting annoyed at the putrid smell coming from somewhere below.)
I got an absolutely lovely letter from a literary agent who went to Paul D. Schreiber High School of the Port Washington Union Free School District. This dude was a literary agent as soon as he was able to talk and became a partner in his Dad’s business. He also happened to be a very good friend of Doug. It’s now a big muckety-muck agency, and he agreed to check out Since When. The dude read 200 pages. 200 pages! That’s unheard of. He said I was a wonderful writer, but in it’s current form, as this mega-family epic, he couldn’t sell it. (He must he been an awfully good friend of Doug's.) Of course he couldn’t! How I wish I could give him a big smooch for his candor.
People often forget that candor goes a long way in this world. What does Judge Judy say (what doesn’t she say, that Solomon of the airwaves?), “You don’t need a good memory if you tell the truth.” I think that’s brilliant. I had a boss who was pathologically unable to say the truth even when there was no damned good reason to lie. She get herself all tangled in it, and had Chip make “all better.” Chip is no sorcerer. When he wasn’t, he was left to eat the shit she left in her wake. There’s a lot Chip doesn’t miss about Grace & Rothschild. But we met some really incredible people there. Pathological lies and all, it was a magical place. No one I know has ever had an experience like we all had there. So I gave up a fat career by not leaving, but I couldn’t leave these great people for some high-paying job at any other agency. We were unique. And we’re all still friends. Creepy, yes?
But let’s get back to mummification and transparency. I wasn’t even depressed. (Well not in its usual manifestation.) I could finally accept that I loathed my days. I hated “exercising.” (I move my arm, that’s cardio.) I also had to walk the hallways until I gasp and cough, gasp and cough, (etc,) until I was able to breathe and do the whole fucking thing over again. (Mind you, I’m not doing this on my own. Chip walks besides me with the mega tanks of oxygen I need to attempt a “walk.” I guess, you guys, when the weather’s nice, strolling is out of the question. Sorry. But I can get wheeled about in my cute little wheelchair though I’m still tethered to mega oxygen tanks. I look simply adorable. (When I’m wearing my oxygen mask- in addition to the cannula in the nose- I swear I resemble- okay only slightly- Hannibal Lector when he’s wearing his muzzle.) I thlnk that’s a hoot. Though Hannibal Lector was never a look I was going for, when you got it, baby, flaunt it.
But let’s head on back where we started (this post does have a beginning if you’ve forgotten. (If you weren’t sick like me, you would have forgotten or recognized this beginning as anything other than a couple of sentences I’d soon forget having written.. I forget everything now. I make no judgements either way.)
I have never liked my next door neighbor. She is a nervouse chahlairya (per my mother from Leah in Florida). Her husband had terrible bowel issues and has had a colostomy bag several times in his relatively short life. (Too much information! Yeah, right.) The two of them are our age? Could it be? Sure can. Isn’t that just terrible? /but I’ve found, through his misery, he’s a very pleasant man and looked forward to bumping into me and chatting. This man is not a chatter. His wife, a Long Island pediatrician, is another story. They have two kids. The older one looks just like her mother and seems like a major pain in the ass. The younger looks just like Dad and appears to be rather normal and pleasant. The nanny (with her Island accent) often mutters under her breath about the older one. Never the younger.
Chip and I seem to schedule my hall walks (the big cardio of the day), when Mama is going in, out, to the compactor room and she does either of two things: when I’m in my full Hannibal Lector gear and Chip is carrying the heavy-duty oxygen tanks, she seems to think she’s cheering me on somehow by loudly exclaimed “Faster! Faster!” with a big smile on her face. Now in my day, I walked fast because I live in NYC and many of us do that here. She knows my diagnosis and the uselessness of my speeding up my already quick(ish) pace. Fuck, I’m not a cripple in the usual meaning of the word. My lack of lung function makes me a cripple and the fun mental issues that appear permanent (more on these in a later post- when I’m not too low to talk about them. Oy.)
“Faster! Faster!” Is distracting. It’s not cute. It’s not funny though she seems to think so as she shoots us a big grin when she opens her fucking mouth. But this is annoying. It does not make me incensed rude as it might be. (You realize that every single atom of my body has to focus on this walk or I won’t be able to complete it. Frankly, if that happened, I’m not sure how I’d finish. I suppose I could always crawl back in.)
No, my neighbor lady doesn’t like cats. She’s not allergic. I think she’s just one of those people who are weirded out by mammals living amongst them or anyone else. Chip wants to lock the cats up for my little walks. Yes, Conway would love to slip into anybody’s apartment. Cleo, not so much. But Conway is the large, fuzzy fourteen pound boy, As cats go, perhaps he’s imposing. Neither cats are at all mean, but if you stick a finger in Conway’s face, he looks at it as an invitation to bite it. How fun!
But I really like when the cats come into the hallway with us. This lady sees Conway, out of her mouth comes , “Cat! Cat!” She is farblonjid and must be attended to before the cripple walking the fucking hallway. Chip leaves me leaning against a wall while he digs Conway out of the compactor room. Poor lady. She could put away those smelling salts. She was saved from the big, nasty puddy cat. Thank the lord!
I was beyond livid. While walking, my back pain is dull and tolerable. (People are so resourceful. I guess we’re like the frog or lobster placed in warm water which slowly gets hotter and hotter. For awhile they adjust to the warmer water. Hey, gotta make the best of it, right? They try and keep swimming. Yeah, until they’re parboiled and ready to eat. Yum!).
Leaning on that wall made my back pain shoot up seventy-two notches. But was I relieved my neighbor was taken care of and saved from the evil feline. If we were both on the Titanic, I’d shove her ass off (even now I know I could take her) the lifeboat and squish Chip and the cats in. Maybe as she treads water seconds before freezing to death, I’ll call out to her showing my pearly whites, “Faster! Faster!”
When this was all over, I was batshit. Chip is afraid Conway will go off in an open elevator never to be seen again. He has a point. But what are the odds that’s going to happen? I don’t think they’re very high. Then again, neither were the odds of my getting ARDS?. At the very least, I want the damned cats to join me on my walks. Fuck you, lady.
Friday, January 21, 2011
I hardly remember the content of my last post. It was written so long ago. It’s slowly coming back to me. Oh yeah. Mom. Since When, regrets. If I’d gotten today’s post started yesterday, it was to begin: Damnit, damnit, damnit!
I should have stayed with my original plan. It’s certainly much more exciting than “ I hardly remember…” It gets my attention whatever value there is to that. Damn it!
As y’all might have imagined, this has been s tough week, and I see no signs of its “dreckitude” ending any time soon (Parentheses around dreckitude, It’s not mine though I think its divine and wish it were. It belongs to one of the newest judges on America’s Next Top Model- the only show watching these days. (Okay, Jon Stewart is usually quite good. As well as Sarah Silverman if you happen to be in a Sarah Silverman state of mind.)
I had a new line to scare the shit out of both Chip and therapist today (who won’t let it show that it does.. (No, I don’t keep the bad shit bottled up. --That’s worthy of a guffaw from every reader of my hellish existence -- No, I’m not kidding. That’s funny. In a dark, mordant sort of way. Who says I can’t laugh at myself?)
I said, “I think I’m losing myself.” Meaning that the person you know or have come to know is fading away, Soon I’ll be transparent until one day, I’ll wake up invisible and gone. Heavy, babelas, heavy. I have less purpose than I had before, and I didn’t have all that much to begin with. My sense of humor has gone out the window flitting away in the city winds to wind up in some gutter somewhere. Doesn’t everything seem to end up in a gutter? I never looked all that closely. Only on days when I had to puke outdoors. Find the gutter and avoid car doors. Words to live by. Could do worse.
So yeah, the Effexor is now back to what had been its effective level except, it wasn’t effective before (hence the heinous increase in dosage). What next for Franny’s depression?
Well, guess what boys and girls, reducing the Effexor didn’t bring me back to where I was. I now shake and am crawling out of my skin. The only thing that helps is doubling my Klonopin dose. Which I always thought of as a stop-gap measure before a “real’ solution is found. No Chip says. If this works, my double espressos of tranquilizers remain in my goody back of drugs.
The anxiety brings out the worst of tendency toward being a wee compulsive. Ha! Come on over, and you will see compulsiveness at its finest. I can’t put anything down. I told myself it will (whatever the fuck it is) be done today so it fucking better be. I knew I had a big problem when I started keeping poor Chip up until four a.m. when he has to get up like most human beings and work. Houston to Apollo Fran, I think we have a problem.
So, you don’t get any ideas, I don’t get pleasure from completing anything, There’s always something else on the docket that must get done this fucking minute because I’m already late and I still have to walk, exercise, read, use the nebulizer, organize my sixties r&b, and god knows what else. What’s this lolly-gagging I’m hearing about? Get moving bitch!
And I do. With terrible reluctance, I steel myself every morning to face another day. I do all my shit—again— and there’s no time to be a human being. But I keep forgetting what that’s like.
Hey, by the way, what’s a smile? (I shouldn’t have been such a hot shot and quit Brownies. At least at the end of the Brownie manual were instructions how to make “a great, big Brownie smile!
Saturday, January 15, 2011
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.”
Monday, January 10, 2011
I can’t do a backstitch with yarn! You try it. That’s one motherfucking achievement if you can swing that. I would even lie prostrate at your feet saying over and over and over again, “I am not worthy; I am not worthy’ By the way, did you know I’m not worthy?” Embroidery thread. Piece of cake. Regular thread, c’mon now. In my sleep I can make a backstitch.
As you can tell by the above, I find sewing soothing. I mentioned the two doll-making kits my mother bought for me in 1972. But she didn’t realize that these were not kits for the faint of heart. Am I actually saying that these kits have remained untouched for thirty-nine years? Can it be? That I left everything in each box untouched, and took them both pristine boxes with me when the Lipmans left the ‘burbs for good? I did. They were so sweet. Like that book I stole from my fifth or sixth grade classroom. Pioneer Germ Fighters because I knew, knew, that no one would love that book more than I.
As I mentioned before, I still have that book too even though I’ve rather outgrown it.
Last night, I saw my brother for the second time since becoming ill. Ah! I don’t remember when I’d seen him, but I did see him once post ARDS and asked him the $64,000 question, “Why didn’t you come?” He never came the whole time I was in the hospital. Chip, Mom, and Doug came every goddamned day. Perhaps Eric could have, if nothing else, provided solace to his brother. (As far as I know, there’s no bad blood between those two.) A reminder of the highlights of my hospital stay: eight weeks in a medically-induced coma on a vent plus another five weeks in the ICU. Looking like a camp victim at a staggering 85 pounds.
People who get such a severe case of ARDS and wind up with crazy-damaged lungs plus bronchiectasis. I love to say bronchiectasis. It just trips off the tongue like ”babbling brook.” (Bronchiectasis is the twisting of now-no-longer useful lung tubing; they’re twisted and hence, fucked up forever and always.) Basically, I have a mélange of tissue that in another form would be happy, healthy lungs. And the word bronchiectasis is pleasing to my ear, because when I hear it or say it, I have a vivid picture etched in my mind of the happy Sinclair Brontosaurus. Yeah, yeah, I know the fossilized beast had been named prior to Sinclair incorporating that cute, smiling Brontosaurus into its public imagery. Except know one knew about it. Not then. I would’ve kept it mum. An Apatosaurus just doesn’t fly. Then the crack Sinclair marketing team would have to fire their agency, and who the hell knows what they’d come up with. The Brontosaurus would kick any other Sinclair mascot’s ass. Like a Sinclair version of the Philly Phanatic. Show that and this is the best you’ll get: “We must have new boards by Friday of we’ll fire your ass.” Oops, that’s my other life talking. Madmen, Take 2.
FYI, no, even back in the day did most admen did not have booze in their offices. (Except, perhaps the big shots.) Anyone who needed to imbibe got drunk off his ass at lunch, and there was always the bar downstairs if you needed, “new surroundings to work on that tough pitch.” Two Gibsons, please.)
Some changes I’ve never understood. “Honey, let’s fill the tank at Esso.” Does honey really care to go to Exxon? For me, the name Exxon evokes the military-industrial complex Ike warned us about. Exxon frightens me. Esso was so tranquil, so soothing. Exxon wants to crack your head open with a hammer. But that’s just me.
Which brings me back to my brother. He is still my sweet, gentle brother on the outside. But after spending the past thirty plus years with his impossible, controlling harridan of a wife, he is filled with more rage than I can imagine. I’m sure as hell not going to go there. What’s the point? If he had made any move in that direction, I would have made him feel it was okay to speak freely. (For real. We were best friends growing up. We grokked each other like no one else did or could. He knows. He remembers though it was an awfully long time ago.) But he didn’t speak about what had become, no exaggeration, a family debacle.
He wanted to see me. He wanted to make sure I knew that he now understood what I’ve been living with and how horrible it must be. He didn’t get it for a long time. And he didn’t need any words to tell me this. I think he also threw in a pinch or two of contrition into our wordless conversation. That was nice. My brother hurts himself more than I ever could, and none us want him to hurt at all. That’s why it’s been so damned difficult watching him become more and more wretched and see that he actually believes he deserves the terrible life he’s made for himself. Now that was a choice he made. No one made it for him. I wasn’t the best-equipped person at promoting myself in those dreadful mid-eighties. I got knocked down. I made tons of mistakes. But I didn’t repeat most of them.
Dinner was more than pleasant. We ordered in a ton of Indian food. (Eric’s all-time favorite, and one of ours too.) When he kissed me good night he asked if that were okay. I nodded. “Of course, you silly brother!” (The latter was not spoken. It was a thought balloon.) My mother is so happy that Eric and I are no longer estranged. Eric, I think, is relieved that I didn’t have a cow at any time during the evening,
But after they left, I was still a ball of pent-up energy. What the fuck was I going to do with it? Remember I said it was not fucking possible to make a backstitch with yarn. Not for me. So I got the brilliant idea of taking regular thread. (In the exact same fire engine-red as the yarn, to neaten up the smile- mainly pulling the yarn stitches tighter with the thread in the back where no one will (thank god) ever see. I worked on that doll’s mouth (for that was what required the fucking backstitch.) One stupid “U,” concave up. I worked on it until it earned my satisfaction. That was at was 3:40 a.m. (Did I have energy to burn or what.)
I am in the middle of a bio of Lindbergh. Absolutely fascinating. Before that, David Remnick’s Lenin’s Tomb: The Last Days of the Soviet Empire. What a fantastic, yummy book! It’s a rare thing to savor something that good. The last book of the Edmund Morris’ Teddy Roosevelt trilogy is out! I can’t help it. I am such a non-fiction girl…(FYI, From now on, the Lindburgh bio or the Remnick are not ever to be used in the same sentence as The Girl With the Dragon Tattoo.)
I’m here writing this post tonight, because the Lindburgh baby was just kidnapped. I’m not strong enough to get through it tonight. It was time for a break, write a post, and sew the doll pieces together using a nice little blanket stitch. Sewn with thread.
Thursday, January 6, 2011
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.”