Category Archives: ALS

ALS, Love, Uncategorized

A Death of a Friend from ALS

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Joe C

My longtime dear friend, Joe Cornelio, died at the end of April, after living with, and I mean, living with, ALS (Lou Gehrig’s disease) for five years. Although he spent the last four of those years in a chronic care hospital on a ventilator and virtually helpless, he never once gave up on life or stopped loving it. He was a miracle of a man and even at the end I believe he would have continued to fight to live, even if all he could do was move one eyeball to say yes or no. It is entirely possible that he would have wanted to live even without that ability, but we will never know.

It is difficult for me to write about the day he died, or about how it came to pass that he was removed from his ventilator, but if you will bear with me, it may do some good (for me at any rate) to put the pieces together and get it onto paper.

I believe that Joe was misdiagnosed for many many years with schizophrenia, when in fact he had had Asperger’s from childhood. Now, that’s a long story in itself and though I could make a case for it, I cannot prove it. But I am not the only one who knew him well to notice that he never once exhibited signs of psychosis or even real delusions or true paranoia. Furthermore, from what I gather, the only reason the diagnosis came about or  “took” was because he was put on Trilafon by a well-known psychiatric incompetent who was later “defrocked” and when Joe looked the drug up in the PDR and read what it was used for, he concluded that that meant he must have schizophrenia. From then on, so his story was, he told subsequent doctors this diagnosis, and apparently they simply took it on faith. In fact, for all the years thereafter until his terminal illness of ALS, the one doctor he saw not only never questioned this, but also never even reconsidered his absurd concomitant Dx as bipolar, even though Joe clearly had one of the most placid temperament possible and certainly wasn’t the slightest bit moody. No one so far as I know ever even considered that there might be something else going on. Even when I once went with him to see his non-medical therapist, did she really seem even to want to think about the possibility, as if it might be too much trouble…Perhaps, though I cannot recall, it was too late, if in fact this was after Joe’s ALS diagnosis.

But as I said, that is a long story, and not being a doctor, I suppose I can’t make the diagnosis, except that as his closest friend, I do and I feel that a great injustice was done. Not only was he saddled with a serious psychiatric diagnosis, and a stigmatizing one at that, but that particular neuroleptic medication rendered him much too tired to work as an engineer. All his adult life that was what he really wanted to do. Work. But the drug sapped his stamina…Worst of all, although eventually on Zyprexa which helped what might have been poor social skills due to Asperger’s, after he had been on it for years it caused the diabetes that ultimately cost him his life.

Speaking of engineering, all the years I knew him, Joe thought, breathed and ate engineering in one fashion or another. It is not that he was an automaton or a bore so much as that he applied engineering thinking to every problem that came up in life, even to our quarrels. Or better to put it, to my various emotional upsets. Whenever I got in some sort of “state” his approach was always to remain calm and to break things down into little pieces and to try figure out, or to help me figure out what was wrong and (just like a man) how to fix things. The beauty of this approach was that it so often worked! He never fed the fires, and he never took things personally, which was pure magic. Sure, he could be irritating for the same reasons, since when he was the source of my irritation, he rarely responded and he never listened to anything I had to say, unless someone in authority said the same thing, and then they got the credit. This hurt my feeligns time and time again, for I felt that he never took me seriously, and discounted everything I said as being worthless for my lack of degreed expertise. However, I came to accept that and by the end it was just a joke between us. I would find him a real expert to tell him what I already knew, just so he would believe it.

Anyhow, for all his faults, and even the dead are not blameless, he managed his last illness with amazing gracefulness and not a word of complaint. The day before he was hospitalized with the pneumonia that put him permanently on a ventilator, he saw a new doctor, who actually gave him a clean bill of health, so to speak, and said his lungs were clear! Joe came away from that hour and a half appointment not saying a word, even though he could not breathe well, and had been to see him because of it. The doctor must be right, no? After all, he was a doctor. (So much for medical degrees and expertise…) It was only later that evening when he went into a breathing crisis that Karen drove him to the ER where they found him suffering from aspiration pnsumonia, a common result of ALS when the throat muscles are too weak to prevent saliva and food and liquid from entering the lungs. He was immediately taken to the ICU and spent  3 months there, first with the aspiration pneumonia that almost killed him, and then, just as he was being weaned off the ventilator, with 2 more cases of hospital acquired bacterial pneumonia, which made it impossible.

After that, it was four years in the Hospital for Special Care in New Britain, where the care was indeed special. They were wonderful to him there, and I believe he would never have survived as long as he did without them. But in the end, Zyprexa had caused diabetes, which he did not even know he had until the ICU tested his blood sugar, and it was uncontrollable even during the years at the HFSC. During the final year the tissue around his  tracheostomy started breaking down and would not heal, which is not unusual in diabetic skin wounds. Eventually the hole that held the tube grew so large that the air began leaking so much that he was not getting enough oxygen without the pressure beign increased dangerously, and during his last week, his lungs began to bleed, probably as a result. He went in and out of consciousness, according to whether or not he had had a transfusion.

Amazingly enough, though, one of the last times I saw him completely alert, conscious and able to communicate, he told me by moving his eyes and indicating letters on a letter board ( he had lost the ability to control his computer, which for years had spoken what he spelled with the gaze of his eyes) that he was “still chugging along.” When I asked him if his life was still worth it, and if he was still happy with it, he answered without hesitating, YES.

He knew he was dying, but he begged me to make sure no one killed him,  that no one just pulled the plug on him or let him die through neglect. I promised him that, and asked his cousin, who was in charge of funds to hire an aide, just for someone to sit with him during hours when the hospital might be short staffed. This man, Ben, turned out to be an angel in disguise, apparently, though I met him only on the final day.

Why the final day even came as it did I will never know, I suppose. I still do not understand the rush, when the very day before from all reports Joe had been quite conscious alert and seemingly content. All I know is that I got a call the next morning that he was going to be taken off the ventilator that afternoon. I asked first if he was unconscious, and was told, um, yes…but it didn’t sound convincing. Then I asked if this was his wish. The response was that it had been pre-arranged back when he had first become ill.

I wanted to say more, but I was up against two strong men, his cousin and the doctor. And under the pressure of the moment, I forgot that I had any rights in the matter, if I did still. I forgot that at least in Joe’s living will I had been designated at one of the medical representatives, and that the cousin was supposed to consult with me before making any end of life decisions for Joe, and then only if Joe were in a persistent vegetative state or completely and permanently unable to communicate. But so far as I could tell, neither of those conditions were true, had not been true up until now and could not be shown to be true within the space of one day. Yet the announcement was so sudden and so abrupt and definite, that I had no chance to say, Wait a minute, what is the rush?! I simply stammered that I would be there asap. I now wish to god I had stood up for Joe. I know he was conscious when I got there, I know that he could have communicated with me and probably have indicated whether or not he wanted this done. But I didn’t dare ask him, or even bring it up, lest they kill him anyway and my letting him know in advance only increase his terror…Would they have done it expressly against his will? I had no idea! I was terrified that indeed they would have. I didn’t know what to do… I had brought in music for Joe to listen to, because I thought that he was unconscious, but he didn’t seem so to me and though he couldn’t respond, he did seem to see me. And even his cousin talked to him with the same apparent understanding.

But it was all grotesque, because I knew what we all did, and were dancing around not saying, which was that Joe was going to die within the next ten minutes. NO one even said a word. (I admit that I did, privately, indicate to Joe when all were out of the room, that I would be there all of the afternoon, for as long as he needed me, but I didn’t tell him exactly why. Well yes, I did say that the plans he had agreed to at the start of his illness– I cannot recall what I in fact said, but I let him know as gently as I could what was going on. Was I cruel, unintentionally? Well, get this: The doctor who was going to pull the plug came in and in front of Joe, as if he could not hear him, told us all what was going to happen, how he would make Joe unconscious with morphine and then turn off the ventilator, and related  each stage that Joe would go through as he died…He told us this blow by blow right in front of Joe, right as I am sitting there at Joe’s side. But when I asked him to speak directly to Joe, he said, “No, not in Joe’s frame of mind, that wouldn’t be helpful.”

HUH????? What was that supposed to mean?

I will probably be asking that for a long time. Why did he not act like the compassionate physician he was supposed to be? Where was any shred of compassion? For god’s sake, if he was “helping Joe not suffer” where the hell was his empathy for his mental suffering? Did he think that just killing him was not going to cause suffering? I mean, what the hell?

Well, I cannot go further with the details, except to say that I left after Joe was essentially no longer Joe, once he was in a coma. All through his illness, Joe had never seemed any different to me, had never looked or become anyone any different from my old friend. But  at the moment I looked up from his hand as I stroked it, I realized that he was gone (though technically alive) and that Joe was not there. I bolted then and there, realizing that I wanted not to see anything more.

Joe is gone now, and I had a really hard time for several weeks. The funeral was held very quickly an hour away in his home town, so few of his friends who had stuck by him could go, if any. However, a few weeks later, we had a memorial service for him in the hospital, a service I personally found somewhat hurtful, but that is another long story. In any event, I wrote two poems for him, which I read for it. Only one can I print here, as I hope to publish the other before I put it in my third book.

DESIDERATA

for Joe Cornelio

When you die,

let there be lightness in your limbs, so they can rise

to lift you from your bed.

May there be clarity in your speech

so your tongue can once more speak the names

of those you love. Let those syllables wash

your tired face. Take up your hands, reach for mine.

You can wipe your eyes now.

Let your smile widen and shine as it can.

When the perigee moon rises above the water

let it pour gold through the trees,

let the fish leap in the blue ripples of evening

and the frogs that are left sleep in the cool mud.

Wherever you are, may you remember

both the friends who stayed and the friends

who scared, for all of us loved you,

blankets to your chin, and let that warm you.

And should the light fail at the end of the tunnel,

remember: only when it’s dark

can you see the stars.

ALS, Blog, Book, Poetry

New Poems and Update on Joe and also on Pam

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In truth, of the following poems one is not really new, since it was published some years ago in a volume called “Three Poets” (no longer available) put out by the Tunxis Poetry Review of Tunxis Community College in Connecticut. But I have always liked it. I will be including both in my second poetry collection, so I am putting them here as a kind of enticement, even though neither is about mental illness and/or schizophrenia. (Those I hope to “pre-publish”  before the book is out…maybe…)

 

BTW: A few notes for clarity and in case you are not familiar with a few words, forgive me: “lieder” means Romantic songs, in German,  “Bawds” comes from the same root as “bawdy” and means, essentially, “bawdy women”, “a water strider” is an insect… “la nostalgie de la boue” translates as “a longing to be back in the mud.” Also, I am sorry that I could not space it better, but the cut and paste option did not allow it.

 

CONSIDER THE BULLFROG

 

who

night and day

belches “jug-o-rum”

to a teetotaling

bog; whose noisy

lieder of drink

and bawds last all

summer long;

who nibbles

asterisks

of water striders

dimpling the surface

of the black pond

and ensnares

tangy damselflies

with the quick ribbon

of his tongue;

who after all

is not a Prince

in disguise; who

suffers himself to be

pithed for science;

who sculls

through sweet

mud in la nostalgie

de la boue; who

is Frog among frogs;

who needs no god;

who does not know

he will die.

 

The other poem, which is new but which I do not believe I will publish before I publish the book, is this one, a “nature poem” of a sort. It was written for my writing group “prompt” on the word “song or singing” as I recall…

 

THE SONG OF THE ANT

“For the listener, who listens in the snow...Wallace Stevens

 

In those days I was always cold

as I had been a long time, mindful of winter

even at the solstice of my high summer days

 

 

always, always the crumb and crust of loss

and near-loss of everything held dear

before the saison d’enfers and the ice to come

 

 

There was always the wind

There was the wind making music,

and I, at one with the quirky stir of air

 

 

bowing the suppliant trees

bowing the branches of those trees for the sound

of songs long held in their wood

 

 

Changes change us: rings of birth, death, another season

and we hold on for nothing and no reason

but to sing.

 

 

Joe has rallied some, yes! yet again, though he is clearly in a terminal decline. Last Thursday, a week ago, we thought he might survive only a day or two,  as he was in and out of consciousness and looked frankly terrible. But the following Saturday he was surprisingly alert again, and so it goes.

 

I was unable to visit him until yesterday, due to sheer exhaustion, and an inability to get a ride there  so that I didn’t have to drive myself in an unsafe state. But when I saw him — that is, Friday —  he was actually able to manage a bit of a smile, and appeared happy to see me. His first words in fact, spelled out on the letter board, were not about him but instead were, “You are beautiful” — what a sweetheart! When I asked him how he was, he spelled only that he was tired. He did tell me that he had trouble hearing, and when I offered to get the nurse to clean out his ear and fix the towel that blocked his other ear, he was grateful. But we couldn’t talk long as he grew weary after a scant twenty minutes. I offered to cut my visit short and return on Monday. That turns out to be easier on both of us anyhow as the letterboard is difficult for each of us in different ways.

 

joe’s level of consciousness remains variable. The irreparable and growing leak in his stoma (a “stoma” literally means a hole, which in this case is the hole in his throat and trachea that holds the tube through which air flows from the machine into his lungs) means that his O2 — oxygen — levels vary tremendously. The fact that he is also very “tired” is also an indication of lowered O2 concentration, though he may not understand this.

 

He did as I reported last time  agree to the DNR designation (Dr O, with whom I have been in touch, because she was so helpful with Joe early in his illness, told me that this is now called AND — Allow Natural Death). I do not think he completely understood its meaning, though, as he asked me two days later. I had to tell him it meant no heroic measures “like cracking his chest and massaging his heart” to make it truly clear to him, even though, if true, it also sounds a little extreme…After all, artificial ventilation is already a heroic measure!

 

As it is, unless the fistula forms (in his case a pathological kind of tube or passageway) forms between an artery that branches off of his aorta, and his weakened tracheal walls, which would cause nearly immediate death (with hopefully immediate unconsciousness without suffocation or any “drowning in his own blood” sensation), it looks like he will die of slow oxygen depletion and carbon dioxide build up. This would probably be the best way…Although his cousin tells  horror stories about “hypercapnia” I think he has been researching traumatic and acute cases of such carbon dioxide excess and not the slowly developing kind that Joe is experiencing. From all I muyself have read about ALS and respiratory failure, Joe’s dying should be painless and “easy.”. Especially if he only gets more and more tired and simply falls asleep…

I have been very weepy about this, esp when Joe has not been able to be very alert and it looked like death was near. But on Friday though he was “tired” he actually spent more time asking me how I was doing than  talking about himself…He “talks” mind you, by spelling via the letterboard. Which means that he looks at me to say yes, and away to say no, while I go down the board by row, and then across the letters, saying them by name…It is very laborious, less so for me because I have memorized the board, than for him because it is clearly tiring. I no longer stay more than a half hour, and try to keep it to 15 minutes. I try also to visit more often than once a week, and if I can, I go every two days or so. Still, as you can imagine, it can get exhausting.

 

I hope I haven’t repeated myself several times in the above, but if I have, forgive me.  I too am tired, though hardly as tired as Joe and not for anything near the same reasons. It is only the stress of having two dear friends “in extremis” so to speak, Joe near death, and Cy seemingly  having surrendered to “fading away.” I know that Cy is 92 and lost his beloved wife three years ago, and it is, I suppose, his right to want to “fade away” but goddam it, his physical health is pretty damn good, but for his own deliberate neglect of it. And it pains me to see that, if nothing else, he is just allowing himself to abdicate living and not even trying to accept treatment, either for his physical ailments nor for any depression.

 

Anyhow, I myself am not depressed at all, sad, yes, weepy as I said, yes, but in general just tired, sometimes headachey, but well enough. I just need to carve out enough time for myself to recuperate each week and NOT visit so much that I cannot do so. I know I need to find enough time to write and do art, as both replenish me in ways that spending time talking with others does not always do, much as I love my many friends. Hey, just writing here has done something towards that end. So thanks for listening, all you, and I’ll be Bach if you’ll be Beethoven for me…(okay that’s a stretch but I hope you’ll be waiting for me, nonetheless.)

 

 

ALS, Art, Art and artwork, Drawing, Health, Uncategorized

Imaginary Interior with Mirror and Red Chair…plus

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Here is a colored pencil nighttime interior, wholly imagined and done without model objects to work from except that the red chair happens to be one that “lives” in my room. You may not be able to tell, but the large mirror on the table reflects one that is meant to be implicit behind the person drawing (the hand in the foreground) which in turn reflects the one on the table, and that reflects it, and so on…). Also, on the table is a photo that purports also to be, and is in fact, one of the artist — me — drawing as well. So you see there are a lot of tricks involved, though I do not think the picture is very expert. The perspective was not meant to be accurate, by the way. It is sorta folky…I simply am trying things I have never done before, like furniture and scenes. After all, you have to start somewhere.

I am also working on learning “realistic pencil portrait drawing” which is equally difficult but in a different way as it involves minute observation and challenges my eyesight too, at least at the moment. In fact, learning both skills are good for me.

I wrote a new poem two nights ago, but alas, I cannot share it here yet as then I could not submit it to a journal. I can only advise those interested in my poetry who have not read it and who have not seen my book WE MAD CLIMB SHAKY LADDERS, to check out the page I have set up (see above) with a number of poems taken from it. I you like those you may also be interested enough to perhaps purchase a copy (and make me a wealthy — hah! — woman in the process). I am hoping eventually to find a publisher for LEARNING TO SEE IN THREE DIMENSIONS, but I admit that I haven’t really tried. In fact, I have been so busy that I haven’t tried at all! I just keep writing and adding to it.

Anyhow, I do not know how many of you know of my best friend, Joe C, (the old blog readers did) but he is dying of ALS, Lou Gehrig’s Disease, after 4 years, 3.5 of them approximately, on a ventilator ( that is to say breathing by means of a tracheostomy tube attached to a mechanical respirator). I do not know how long he has, though the situation is really dire in a way that is difficult to talk about. He refuses to agree to a Do Not Resuscitate (DNR) order, though there is nothing they will be able to do for him except torture him if he does not…Oh god,  he is in such awful straits, yet so wants to live! It is so tragic… The only good thing right now is that Dr O, that wonderful woman and my former psychiatrist, who was so kind and helpful to him, and of course was to me for so many years, was ordained a minister after she moved away from CT and she is going to visit him tomorrow, if she can…and see if she can help him.

You know, my absolutely biggest fear for Joe is not his dying, but of his being afraid, and that is where I think she can talk to him in a way that he will profit from, because he listens to her, and always has, in a way that he never has listened to me.

Joe basically responds best to female authority figures, which is strange given that he has a terrible relationship, really none at this point, with his mother. I no longer mind this, I am used to his not taking what I say as having any merit. But if Dr O is able to help, I just want him to get to that place where he can accept his approaching death and is not scared…

All this is by way of saying that if I am silent here for a while, please think of Joe and of me, and send him your prayers? Thank you, all of you.

I am putting up a photo Joe and me just after he was diagnosed, when we were at the Lahey Clinic for one of his appointments there, and then one of the few that I have with him at the hospital where he currently lives. One when he was still able to smile. You will be able to see the extreme changes in him, but to me, I have always only seen the “same ole Joe!”

Joe C and Pam in 2006, December
Joe and Pam November 2007
ALS, Art and artwork, Book, Poetry, Uncategorized, Wisdom House, Writing

GREETINGS FROM WISDOM HOUSE! (Plus an unrelated word or two about PARANOIA)

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Photo by Sr Jo-Ann Iannotti OP

I hope I am not encroaching on Sr Jo-Ann Iannotti’s copyright, by sharing this photo, but if I am I trust she will let me know. In any event, this is one of hers  and it is everywhere at Wisdom House. I believe it is a beautiful example (if that is the proper word for it) of the spirit of Wisdom House. Of course, the physical labyrinth, is stunning by itself, but somehow this photo captures the experience of walking it  and the process of meditating and “being there” in a way that mere words describing likely could not. Surely, if nothing else,  this photo alone is a wonderful way to “advertise” Wisdom House, if it ever needed such a thing.  If you can, visit http://www.wisdomhouse.org and look at the virtual tour photo gallery. That way, you will get a good idea of what the place looks like, and perhaps get something of the flavor of people’s first impression. I know that even the first time I came here, despite my misery concerning all that silence, I knew it was a special place…

Jo-Ann says she has no idea who the woman in the labyrinth center is, that it was a fortuitous shot and nothing more. Frankly, though, I suspect getting the photo took more than mere luck, even just to have been there to capture it!  It exquisitely represents both the spirituality of this place as well as peace and peacefulness.

Clearly, you can tell where I am: at Wisdom House again, having a good time this time. I only wish I did not have to depart tomorrow.Even though I spend most of my time alone, the mere presence of other people, laughing and talking and obviously having a great time, buoys my own spirits and makes me laugh aloud myself. I think it is great that they are laughing so uproariously, and it is great to see everyone with their doors wide open, people, women my age, sitting on each other’s beds, gabbing like college girls. The lovely thing too, about Wisdom House in general is the absolute faith in people’s basic trustworthiness: NO one has a key to their rooms, and no one seems to feel worried about anyone entering or stealing a thing. I frequently leave my computer and writing equipment right out in the open on the sun porch, without the least qualm, feeling secure in the knowledge that everything will be just as I left it when I return. Indeed, the sense of trust that I know Jo-Ann has in people is infectious, and I somehow know that everyone who comes here is trustworthy at least for as long as they are here, even if they might not be all the time when they are not.

Now, I may be naive, but I too have been known to be overly trusting, and I think that is a better option than not trusting people. At the same time, though, I can be extremely paranoid as you know, and I do mean “at the same time…” I suppose that is difficult to comprehend: I will simultaneously give away whatever I can, if I feel I own too much and yet also feel as if people are secretly stealing from me, taking things I need out from under me, without even asking or telling me, which makes me angry, because I am already generous, and never ask for a single thing in return, but I’m sorry and feel bad to admit it, but somethings I am not ready to simply have things taken from me without my say so! I feel guilty about this, though, as if I am so attached to material things that I cannot part with something that someone else needs more than I do (for why else would someone resort to stealing it???). Why do I need to be so attached to anything, that is, to any mere object? It will never save your life or your soul!

I am drifting though…forgive me.

One great thing about this weekend here is that despite my having slept till noon today (after spending several days before last night with very little sleep, and even last night beginning to fear for my brain and my sanity due to sleeplessness as I was up till 4am involuntarily) I have pretty much gotten the book organized and put together. Now, that means only that I have made the organizational decisions, which is the major part of the problem. But I needs must (!) still go through the actual computer manuscript and change it, to make it conform to these editorial decisions. Not extremely difficult, just time consuming. At the same time, certain poems need editing and some rewriting/fixing. This I enjoy, the perfecting of the lines I don’t feel are quite right yet, but it takes time and energy. (I even have a two relatively new poems to add!) Alas, I will not be able to come up here to take the time for myself to do nothing else. Too bad, as it has been very convenient and much more than that. It has been, well, useful in the sense that I have been productive “to the max,” able to say NO to email and phone calls, not even walking with Diane L or doing laundry or cleaning or shopping, just writing all day. I suppose taking my usual 2 miles walk would be a good thing, but for just a weekend here, I would rather not…And although I brought art supplies just in case, I haven’t even taken out my sketch book, that is how good the writing, and the editing, have been going!

—————————————————————————-

Speaking of the labyrinth at Wisdom House as I did at the top of the post, let me segue into a few words about paranoia: I have not walked the labyrinth, nor even approached it. The closest I have come is to sit at the top of the stairs looking down at it relatively from afar. The very idea of “doing it” makes me feel both rather shy and then scared to do so. I am in fact scare that God might strike me down, should I have such temerity as to try it.  I am also squeamish, not sure I could relax and not feel paranoid, not feel so much on display  that I could not concentrate or let myself be “unaware of being observed” — whether I am in fact under observation or not.

That of course is the essence of paranoia: it matters not a fig whether something is really happening, it matters not another fig if someone’s really after you or really against you: if you feel it, if your amygdala is working overtime to generate that feeling, the intense feeling of fear that it is meant to generate, well, that’s it. That is how you are going to feel. And “the feeling is primary.” That’s what Dr O told me time and time again. You feel the fear first, and primarily, and then the story or reason for feeling it attaches to it. But if the fear  gets entrenched or doesn’t go away, the story,, that is, the brain’s explanation for the feelings of fear only gets more entrenched, because how else can you deal with fear? It is extremely difficult to feel fear unmitigated without somehow understanding it as coming from somewhere, or being stimulated by something, having a cause or reason. The brain always wants to make sense of things, and it does this whether one “wants to” or not.

So even though I am aware of what paranoia is, I have never been able to control my thoughts when it is happening. It is only after the fact that I can, now, sometimes, look back on a difficult situation and with a clearer head understand how I might in fact have been paranoid in my behavior due to my fear- induced understanding of what was going on. It is very very difficult to override such feelings, esp on such  a fundamental level.

I wish I could write more now, but I’d better to get back to my writing before I have to get back to sleep. As it is, it is 1:50 A.M. and we — Ann W drove here with me — the other fellowship person — have to drive home tomorrow around noon. I wish dearly it were not so, but there you have it. For now, I will leave you with a poem that will go into the manuscript of my second book of poems, which I call at least for now (several people have been enthusiastic about the title, except my father), LEARNING TO SEE IN THREE DIMENSIONS. I share it with you now, because while still unpublished, I do not think I will seek publication for it elsewhere, separately…The first one, for my old (and former, but possibly dead now) friend Roland, was previously published, but in a much different version. I apologize if the lines come out with large spaces between them, but the cut and pasting function never seems to allow single spaces… OR stanzas for that matter, as this poem was originally broken up inot five different stanzas but now appears to be in only one long one… The second poem is about Joe, and describes my own encounter with fear of botulism, which has similar symptoms to ALS — so I feared — and my nostalgia for his voice, which I will never hear again, except on his answering machine, and on one or two micro-cassette tapes we made some years ago…

FOR A FRIEND SUCCUMBING TO AIDS, 1980s

For Roland

This could be your whole life,

thumbing a ride to wherever the cars are going,

the casual, tossed out hellos and good-byes

that turn around the axle of your quick life —

that far, just that far, and then you will stay,

forcing a stranger’s town into the shape of home.

Yet you’ve lived a dozen lives — in the Keys

with the one you finally loved, in western Portugal,

Nova Scotia. Last year, already marked, you spent

the winter in your bed,which just fit in a backyard shed

in Vernon, Connecticut. And there was a life

to accommodate each place, its sweetness and pain.

When we met, you taught me the local architecture,

the difference between Georgian and Greek Revival,

and you thanked me for the poems you gave me.

Then you called late one night, drunk enough to over-

dose. Thoughtlessly, I rescued you, a dying man…

You never forgave nor spoke to me again.

Now once in a while a car slows, pondering

your beard, your emaciation, the known and unknown

risks, sees you finally, and explodes away from the shoulder

where you stand, all its doors locked simultaneously

against those Kaposi’s inflorescences that stain

your dying…Roland, Roland, don’t you know

we all die in shame and alone? We die, perhaps,

not far from home, or perhaps, like you, wandering,

waiting for the one car to cross the bridge

whose toll is so high we all pay with our lives.

WORRYWART

Tonight I’m up late worrying

about a badly canned chestnut puree

and botulism, which is useless

since I’ll know soon enough from

what the Merck Manual describes as

“difficulty speaking or swallowing,

drooping eyelids, double vision,

lassitude and weakness progressing

to paralysis” that I have it

or not. Not very likely with only

130 cases in the U.S. in a year,

but as I said, I worry, and worry attaches

to anything: leprosy, asteroids falling

from the sky, dirt on your hands.

Most people worry too much

about things that won’t matter

after six months. My friend doesn’t

have to worry about those. He is

losing his speech to Lou Gehrig’s. In six

months who knows what won’t work

any longer or which will matter

most. His assistive device says

the words he types, but how I miss

the sound of his voice, which I’ve forgotten

except when I call and the old

machine picks up: Joe speaking.

I can’t answer the phone right now

but I’ll call you back as soon as I can.

ALS, Art and artwork, Uncategorized, Writing

Writing Fellowship at Interfaith Center

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Sorry for my  long silence. Things have been busy at best, sometimes just plain hectic.

On the good side, though, this: the Writing Fellowship. A place called Wisdom House in the northwest hills of Connecticut offered free fellowships of 2-10 days for low-income writers from this area to come and stay to work on a writing project. I applied immediately, wanting time to organize, come up with a title, and send out my second book of poems to the Barnard women’s second book contest. Well, after speaking to my references and to my new psychiatrist, they accepted me, the sister in charge calling me last night at 9pm to give me the news. (As my friend, Leila, put it when I told her how late the director called, “nuns do not keep bankers’ hours!”)

Now the only reservation I have vis a vis the fellowship is that it is going to be held while the rest of the center is on a “silent retreat”. This means that everyone else,  aside from the two other writers and me, will voluntarily not be talking the entire time. According to Leila, they will not be looking at others or even raising their eyes. While I wanted time to write, I have to admit I anticipated a more convivial atmosphere, or at least a less daunting one. This does not sound exactly friendly. Spiritual, yes, but not friendly. Sr Jo-Ann does, on the other hand, and she has offered her help in any way she can (since I have been more than open about my illness) but I don’t know that she understands quite how difficult I may find this. Even the problem of getting to the dining hall, the speaking one or the silent one, or eating with other people, should I manage to get into the building wherever it is, may pose a huge obstacle, if my experience at the art and crafts center two years ago is any predictor.

Well, I am determined to go, so I will not let my reservations, nor even the tears I shed last night in sheer terror stop me. I must confess however that I am not without mixed emotions in face of this overwhelming silence — and the resulting loneliness or something much worse — I fear I may confront.

On a somewhat brighter note, for six week, I took an art class in New Haven, at the Creative Arts Workshop. I wanted to learn the rock bottom basics, which I figured I needed to start with. Even though I have successfully painted some portraits, I know I need to learn fundamental techniques, both in drawing and painting so I’m not just floundering around, painting more in hope than with real confidence and skill. But getting to the class meant that I had to drive to New Haven — on the interstate —  for the first time in more than 20 years. Unable to drive home that same night, I spent two days a week there, staying at my parents’ condo, usually with my father there (my mother was usually at the shore, at the other house). I enjoyed that part of it almost as much as the class. We were so long estranged that I love just seeing him and getting to talk with him, no matter what we talk about.

The class might easily have been too much for me. Three hours of drawing could have sapped all my energy and taken the enjoyment out of it. Instead, somehow the time just winged away, and after the first class, which was the most tiring because I had not yet adjusted to how long a span of time 3 hours was, I got into the rhythm, and never once left early. In fact, I often left with the teacher, just so I talk with her about art.

Now, I say all that as if it were easy and not problematic at all. Certainly no one in the class would have any idea that I feel as I do, but in truth I became quite certain, and remain so, that the teacher soon grew– how do I put it? — sick of me. Overwhelmed by me. Found me overbearing and overly enthusiastic and therefore unpleasant. I know my presence was too much for her to take and so I tried to tone it down, tried not to ask too many questions or talk too much so I stopped staying after class, or showing her what I had done during the week…And frankly, I am a little scared that if I sign up for her next class, which will be a continuation of the last one, it will upset her and she won’t want me there.

In point of fact, I felt the entire class was laughing at me most of the time, that they agreed with her and that they mocked me whenever I left to use the bathroom or to wash my hands of the charcoal that we used so often.

It was only just before the final class, when I brought my sketch pad and showed two people what I had been practicing, that they seemed to realize that I was serious about drawing and art, and not just a foolish older woman taking a class for entertainment. One young woman, Jennie, actually talked to me then, and said I was “very talented.” When she asked for my Facebook page, I gave her the name Pam Wagner, which of course she will never be able to locate me with, alas, as I would be happy to communicate with her.

Nevertheless, I remain wary of the teacher, and of taking her next class, lest I be more than unwelcome. Lest I be bothersome and actively hated. I feel it incumbent upon me to spread myself around, spread the burden around, spread the miasma I cause as wide and therefore as thinly as possible so as not to sicken anyone seriously. The only real solution I can think of though is to completely shut up and be as minimal a presence there as I can. To not be visible in any way, to make no sound or impression…To do the work, and learn what I can, without, so to speak, making a mark. That way I won’t bother anyone or disturb the peace, or anyone’s peace of mind.

Then there are less positive aspect of being “busy” — Well, no, I cannot dig into this at the moment, except to say that I need to take a break from seeing Joe. Joe, if you recall, is my long-time friend (24+ years), who has Lou Gehrig’s Disease and has been in hospital for 3 years, mostly paralyzed and on a ventilator. I have visited him almost every week, sometimes twice a week, all of that time, but now I need to take some time for myself, take some time to think about what to do.. It is true that I have sometimes been away for as many as 6 weeks, but that was when I was hospitalized, and while to Joe it may feel only as if I am absent — who cares why!– to me it is not voluntary time off and certainly no vacation!

I love Joe, but only as a friend, not as a girlfriend despite what people think. And if the people in the hospital believe otherwise, it is only because I told Joe when he first became ill, that I would “be his girlfriend” — the one dream he always cherished and held out for and hoped would come to pass for some 24 years! And mostly because it was the one gift I could give him, knowing that it was a dying man’s wish-come-true.

The problem is that when he was in fact dying, when he had terrible aspiration pneumonia and could not breathe without assistance (at which point, most people with ALS, or Lou Gehrig’s, opt to die, knowing what the future holds) he asked to be put on a ventilator. Hence, for the past 3 years, I have had to act the part of devoted “girlfriend” (completely non-sexual, though, just as our relationship has always been). And it has long been assumed that my love for Joe is the sole driver behind my visits. Not pure loyalty, mind you, but in some sense my own selfish need to be with him. It seems not to have occurred to anyone that maybe I do it mostly for him, to help him and keep him company…rather than because I myself want anything from it at all.

This is not to say that I don’t enjoy seeing Joe, or that I resent spending time with him. Most of the time I do not, or when I do, it is only because I feel I cannot say, No, I cannot come today, or worse, No, I do not want to come today, not even when I haven’t slept and am utterly exhausted. Usually when or after I visit, I feel better in some sense — at least about us. I feel less guilty and more needed (a double-edged sword!)

But I admit that it is extremely tiring to have to stand up the entire visit — an hour or two — and pay exquisitely close attention in order to understand what his  computer (which takes eons to do it)  translates from his spelling into speech. When I finally get home after the 30 minute ride back with Josephine, I am wiped out for hours. Even on a good day, the rest of the afternoon is shot just because of visiting him, and that is true even when I only stay an hour.

Well, I said I wasn’t going to go into it, esp not with details, so I will leave that alone, except to say that recently we had a big — what was it? Altercation? Spat? Misunderstanding? Who knows what to call it, but it left me me feeling unappreciated, taken for granted, and most of all, just plain angry. Worse, it induced this exhausted feeling in me that left me hopeless and desperate. That is why I wrote Joe and told him I needed some time off, needed time to reflect and think about things. I did not ask him for it, nor tell him what I needed it for, nor how long it would take. I did reassure him I would be back. But otherwise I simply stated my needs and informed him what I was going to do about it.

I haven’t heard from him since, but unless he is still upset or angry with me, which would be unlike him, he is simply giving me the space I need.

That is all I have the energy and time for tonight. I hope to go out for another of the 2 mile walks that a friend and I have set for ourselves to do as often as we can. We are trying to get in 10 miles a week, but so far I think the best we have done is maybe 8 miles. Still, that is MUCH better than doing nothing at all, which was my usual, until we got together to spur each other on. Usually it is she who gets me up and over to the park to meet her, and I who keeps her going at a great clip. So we help one another and get our gabbing done into the bargain.

Thanks for your patience. I have another entry planned, and hope to work on it tonight for posting tomorrow or the next day — about delusions of grandeur and other symptoms.

ALS

ALS, or Lou Gehrigs Disease: A Confrontation.

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I’m in the middle of writing a poem when the phone rings. I read Joe’s number off the caller ID. It’s 9:30 A.M. I set aside my poem and push the button for speaker phone. It’s not that I don’t want to talk, but I know the shortest call will take at least a half hour and most likely more. I am not ordinarily a telephone person. If I had my druthers I’d take email any day, but Joe has no choice.

“Hi, Joe,” I say, carrying the phone into my erstwhile bedroom, now my art studio. “What’s up?” I push the button for speaker phone and set the handset on the table near my newest project, the two and a half foot tall papier-mâché goose that is my first commission. Picking up a brush, I paint while I wait for his reply. Changing gears is always good for my brain and now that I’ve made the change, I find I’m happy to talk.

A distant ka-chunk, ka-chunk, ka-chunk comes back, a pause, then Joe says, “Pam. Pam. Pam.”  It’s actually a computer voice named “Fred” (or something) and it is not so different from Hal in the movie 2001, or more to the point, Stephen Hawkings. But it’s one with which I have become terribly familiar. If I did not have a single mini-tape of Joe and I talking in 2003 about Sister Wendy’s art criticism and what we think about a painting by Rousseau, I would have nothing by which to recall his old voice. As it is, I dominate the tape. Closer to the machine and apparently hypomanic, time after time I interrupt Joe in my enthusiasm, even when he does say something. But I can hear him in the background and when I deign to let him, he speaks fluently and without impediment.

The tape was made three years before everything changed, before slurring in his voice turned out to be the first sign that he had amyotrophic lateral sclerosis, otherwise known as Lou Gehrig’s Disease.

———————————————————–

There’s a moment like a car-wreck, when your heart is crushed, no air-bag to cushion bad news. It happened like this:

My wrists bandaged from the day before, I was sitting on my hospital bed in the room without any furniture, only an aide guarding the doorway, when several people walked right in: my twin sister Lynnie, my psychiatrist, and the hospital social worker.  My first thought about them was, A whole committee? What are they doing here? My second thought was, Uh, oh, nothing good can come from this! The fact that Lynnie was there struck me as particularly ominous; she had more power over me than the other two combined. I feared there were to be dire consequences to my previous day’s act of desperation: was I to be sent to the State Hospital, assigned a conservator, forced to have more shock treatments? Each of those things had occurred before and I could not bear them a second time.

I sat forward, my arms crossed protectively against my chest. “Why is Lynnie here?”  I muttered to Dr O, whom I thought of as my only hope and protection, though that hope was fading fast. She didn’t seem to hear or understand. I frowned. The Committee stood, silent, around my bed, towering over me, or so it felt. I cowered. I waited for the blow of some hammer I didn’t want to fall. After several seconds, I couldn’t bear it. “What do you want?!” I finally snapped. “I’m not going to–”

“It’s Joe, Pam,” someone said with infinite gentleness.

“Joe?” You mean this was not about me but about my best friend? Suddenly I understood. Hadn’t I witnessed with concern as Joe’s voice became increasingly garbled over the past 6 months? He had several times choked on food. No one could seem to figure out what was wrong. He’d had test after test. I started looking things up on the internet. I had come across some constellations of symptoms that seemed to match, but the possibilities were simply too dire to contemplate…

“He has Lou Gehrig’s disease.” My heart plummeted; it was as bad as I’d feared. But why call it by what was practically a euphemism? Did they think I’d never heard of Amyotrophic Lateral Sclerosis, motor neuron disease, that I didn’t know what it was? I knew what was in store: with a mind remaining intact and progressive paralysis of every single skeletal muscle, ALS was inevitably fatal.

There’s a moment like a car-wreck. Your heart mangled and torn, no airbag can pillow the punch. No, it was not I after all, but my best friend, dying, the news like a gun-crack at silent dawn. A wail burst from me. I pounded the bed and I hit myself. “I knew it, I knew it.” And I had known, all along, but feared if I spoke the words the terrible truth would become true: somehow I knew it was I who had dealt him such deuces…

_________________________________________________________

Added in Aug 2009:

That night, after the Committee left me in the care of aides still sitting one to one with me, I went to sleep alone in the room cleared of everything but my bed and nightstand and only my journal to write in. I had eaten little dinner, and spoken to no one that evening, only sat numb and silent, or writing by myself in my room, saying nothing to a soul about Joe or myself, about how I felt about either of us… But I was thinking about us, about how Joe, the dear man who was my most loyal and generous and deoted friend, must have felt when he got the news, wondering how he was feeling now…And I wondered how he dealt with it…I could hardly bear the thought of seeing him now, now that he was dying. Things felt to me almost unbearable, unbearably changed.

At the same time, I felt lonely beyond speaking of it to anyone. Despite all the commotion my temper tantrums caused there, and they did, I was alone most of the time trying in vain to control the self they believed i willfully chose not to…In fact I (Oh, I have been through this a million times, and it still rankles, but no more.  It doesn’t matter what they thought. They were wrong and if they didn’t know it or care, why should I?) Anyhow, I felt sad suddenly, not just for Joe, but for all of us, Joe, me, and Cy and Lynn as well, who were elderly and Lynn was very frail after having caught pneumonia in Israel sometime earlier (was it just that January in fact?). I cried a little, quietly in bed, until I finally went to sleep. But I slept shakily despite the Xyrem and kept waking, thinking I heard the aides talking about me…which likely they would not be doing, since what would they give a damn about me for? The book, that trusty old book the Four Agreements has finally pounded that into my head: They had their own lives, their own problems… my losing my best friend to ALS, or at least his body being given over to that terrible illness, was surely not their issue, or their sorrow, so why would they care about me or talk about me? (You see, I know that now, but try to convince me of that then and Id have sworn to you you were crazy, of COURSE everyone was thinking about and talking about me! It was clear as the sound of the traffic on the highway! — which come to think of it, might not have been audible either, though I thought it was, all the time..)

Finally, I guess no one wanted to talk to me, everyone being afraid of me, so they enlisted the Jewish Chaplain to come and counsel me, figuring if they could hear me cry, if she could “get me to cry” they would know I was all right…and that they would not worry about me. I know that because — oh, what the hell does it matter? She was very nice, the chaplain,  and very ecumenical, and I was gad to hear it as I would not have been happy with any religious rant…

When Joe did visit the next day, he looked great, smiling and almost joyful. It was weird. But he said that he felt fine, and he viewed the illness as a great adventure, even the propest of dying didn’t faze him. Besides he said, he was on the ten year plan…He figured if he could last three years, outliving expectations, then live five, he’d be good for the unheard of ten, maybe fifteen, or even twenty, who knows….And I believed him, just listening to him tell me his plans.

You know, I think his very optimism has carried him far.  See how is he is now, but he hasn’t gotten pneumonia a second time, quite despite the ICU’s predictions of constant recurrences and his making an early decision to die…No, he had one infection with C. dificilis, but after that, which was cured, despite its reputation for hanging on and on, he seems to have been quite well, and very well taken care of. NO bed sores for one, which to my mind indicates excellent care of someone who hasn’t left his bed or his supine position for more than two years…Which brings me to the case in point: he has made it three years! He was diagnosed in August of 2006, after havaing been ill since at least January. And it is now Aug 2009. So that makes it Three years he has survived this crummy disease. I asked him how his movement was and he was able to make some shaking movements so he has some muscle fibers yet…All is NOT as “gone” as I’d thought! He even has a twitch or two in his fingers…So he could use switches for all sorts of things, if he would let the staff know he had the use of those muscles. But he doesn’t, for some reason. When tested, he lies completely still and doesn’t let on that a single fiber remains active. Its as though he doesn’t want to move a muscle fiber any more, doesn’t want to live, physically, only wants to live in his mind…Forgive me for saying this, but it felt that way from the moment he was hospitalized. He simply abdicated moving once he got pneumonia, he stopped fighting and surrendered completely.

Why do I say that? Well, he never again tried to walk or move his arms or do anything that he could do before he got ill, and I think he probably could have done them or been rehab’d to doing them, had he simply wanted to. But I think being sent to the Hospital where he would be on a vent and trache for the rest of his life gave him permission to take on the role of paralyzed patient early, and he saw no other way…Perhaps he didn’t know that there would be other freedoms, like the step down unit and going outside with a portable ventilator, if he had tried harder to use the muscles he still had (after all, even with pneumonia he had been walking and driving and doing everything a non-sick person does, though with increasing weakness and difficulty. He had not yet begun to use a cane and had only just caved to getting orthotics made for his ankles…). I know he was terrified of being wheeled into the dayroom and left there to do nothing all day but be captie audience for soap operas and cartoons, but he wasn’t even trying to let anyone know he had muscles for them to train, or rehabilitate….so no wonder no PT therapists came for him!

Oh well, it was his choice, unconscious or not. It is all water under the bridge now, I guess. I just feel bad that he won’t even now let anyone know that he has this remaining ability to, say, shrug that could be useful…I have to beg him to blink his eyes to say yes, when we are using the alphabet board, but it seems to me that there would be other easier ways to communicate with us without the ERICA, if he would admit to the SLP (Speech-Language Pathologist) that he had muscles they could use to arrange something, hook him up to something.

Enough of this for now. I have a headache and this ain’t helping nothing.