Thursday, March 24, 2011

The Port Washington Union Free School District

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

"Indian Princess" circa 1970

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

This Is It

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

Thinking, thinking, thinking...

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.