Red Nose This......

Happy Holidays,
Just Enough Snowfall,
and a Brilliant New Year to All!

Wishing Everyone Good Health and Peace!!!

Love From Us Both!!!!!

-- Paul and Sonja

She's Alive!!!!......She's Alive!!!!

Hello Everyone, Sonja here.

I was released from the hospital two weeks ago today and I couldn't be happier to be home. What an experience! I hope none of you go through anything close. Being on the other side of it, I must say I have never felt better. How strange is that? They still have no idea of what caused my organs to fail...or what made me blow up to resemble the Michelin Tire Man.....or what made them so sure I would need a liver transplant...etc. The upshot of the entire experience is that all of my organs are back on line and functioning at 100% capacity. The irregular heartbeat is still there, but the cardiologist is talking about "shocking" me back into a regular heartbeat. They do it all the time. Sounds a bit daunting but you are knocked out for the procedure, so what the hell.

I am on lots of meds, using a walker but I'm getting noticably stronger daily. And very very happy to be here. I go back to teaching at Cornell the middle of January. By then I hope to be snow-shoeing through town.

From what I'm told, I was "sundowning" quite a bit during this illness. I know that in my head I was many places other than my hospital room. Initially, I was convinced I was making a movie, playing a Dutch girl (??!?!don't ask), then I was convinced I was going on Oprah and my entire situation was being made into a sitcom (so in true actor fashion my delusions were about looking for work) then I was convinced they kept changing my room on me, and oh, yes, the headless cats running around. Thank God for Paul keeping track of this stuff. Speaking of Paul, let me go on record and say that I have the most wonderful husband in the world. He never left my side. There is no way I could have gotten through this experience without his love and support. Then and now.

Let me also go on record and say that neither of us could have weathered any of this without our friends and family. I was humble and grateful and oh so thankful for all of you and for your comfort, your prayers and good wishes, and your support at every turn. There are no words that can say what I feel.



Merry Christmas to all of you. And a Happy New Year. I hope to see you all this coming year.

Love, peace & good health,

Sonja

-- Paul and Sonja
959 Dryden Rd., #D
Ithaca, NY 14850
334-669-8657

What's Left Unsaid.......(Updated 12/8)..........................................

So.............seven days home now, and the dust is finally settling a bit.

We've had home care periodically over these last days, nurses to continue monitoring Sonja's blood work and a physical therapist to help her become more mobile (and as my high school football coach would have said, "....agile and hostile!!!") and to regain her strength more fully. She is getting stronger every day. Her use of the walker now is minimal (no longer used at all in the apt.), and her appetite, though still visited by strange cravings, has largely returned. And last Tuesday we began a new relationship with an internist/GP here in Ithaca. That was a long afternoon, but all went very well as we transitioned to local care here, and we both liked our new doctor very much (a young woman originally from Prague with the stunning first name of Lucia). And next week we see a local cardiologist to begin the monitoring of her now medicinally controlled atrial fibrillation.

It has been wonderful to be back, as you can imagine. It has taken awhile to really feel that we were back again. I think we both were so fully immersed in the world of Hospital, and everything that subculture represents, that it has taken a few days to de-compress and let go of those environments. But some of it all, some of the images and impressions, remain more strongly present than I might have guessed, and so, with your indulgence, I'll relate a few last experiences that shaped our day to day experiences there.

The most obvious begins with a simple question. Why do so many hospitals and medical centers in this country find themselves located directly across the street from major cemeteries?? Maybe it's me and my sense of the morbid but I know on more than one occasion I've been struck by this odd convergence of the hopeful and the past hope. You don't have to be a huge fan of the macabre to feel a little weirdness staring out the window of your hospital room, only to be faced by acres of tombstones lining up across the street.

Mt. Hope Cemetery (irony perhaps fully intended) rolls on for hill after hill the full length of Elmwood St., along the entire street front of Strong Memorial, and probably for some distance beyond. Staring from any window, you try to think of it just as some kind of huge park or greenspace, but sooner or later your confronted by it's real function, and depending on your particular circumstances, you end up looking at the sky a lot. Which is maybe not a bad thing. The truth is if your stuck there long enough, the weirdness fades into the background, and you come to embrace the view, to embrace the metaphorical certainty that your not across the street yet. And then, as with many aspects of long hospital stays, it becomes strangely reassuring.

And speaking of the view......there was one very, very long afternoon about two weeks into our arrival, when I had just finished a long interview with a nurse practitioner from the Liver Transplant Team, and things in general were looking pretty bleak. The rooms in the ICU have all recently been renovated, so there are small alcoves in each room with chairs and a wall couch by the window. I was sitting there alone, with Sonja unconscious in her bed, staring blankly out the window at the square of huge brick buildings that opened out across from ours. Suddenly into that open corridor of air the largest red-tail hawk you've ever seen floated into view. Drifting on the wind from the direction of the cemetery (ok, another plus), it rode the currents first higher, and then back down to eye level slowly, achingly slow, across my field of vision and into (bear with me here) the sunset. He was close enough to see his pin feathers, the spread of the feathers in his tail. It was one of the most beautiful things I've ever seen, and regardless of one's perspectives on faith, signs and meaning, was truly uplifting at a time when I desperately needed something to help me keep going. And it did.

And speaking of the Liver Transplant Team......I'm sorry, I know these guys do truly astonishing work, but I couldn't help but come to think of all of them as Ghouls. While I was desperately hoping and praying that her liver would recover, these folks were obligated to get me familiar with the protocols and procedures for being listed on the roll for a donated liver. It was their job. But trust me, there's a world of difference between a doctor who observes and treats the whole person (such as our lead doc, David Kauffman, the head of surgical ICU), and a surgeon. I won't say they were insensitive to what I was going through....well, actually, yeah, I will say that, especially that asshole who forced me to go over all the paperwork the day of the red-tailed hawk. So there. That's all I have to say about liver transplants and surgeons (thank god).

And the endless hallways.......There was a hallway on the eight floor, the ICU/PCU floor, that curved away into the end of the building, where the far less used utility elevators were. It had large windows on three sides, and was a favorite place for the families of patients to wander into for calls on their cells or to just get away. Unremarkable except for the one, largest window, facing the longest and prettiest view of Mt. Hope (it was fall foliage after all), I spent a fair amount of time here talking on the phone to our many friends and Sonja's Mom and brother David.

After awhile, I began to notice that, looked at from a few feet away and at an angle, this window showed a series of smudges, small rectangles really, at varying heights across the length of the window. Didn't think much of it at the time, but then I noticed that the other windows didn't have the same smudges, and then I started to wonder why. The mystery was solved a few days later, when turning the corner I saw an obviously stressed caretaker on her cell phone standing by said window, and as I turned to give her some privacy, she ever so slowly leaned forward, until her forehead was touching the glass. She just stood there, listening, not saying anything on her end of the conversation, lost in her own thoughts. Later, under closer examination of the window, it was clear that pain, care and sorrow had struck everyone from approximately 5'3' to 6'4'. And those were just the ones who'd found some comfort in leaning.

And then there was the last week and a half spent in a "regular room" on another floor in the hospital, in our case the fifth. We were in 5.1400, the neurological unit, so most of the other patients were recovering from or dealing with strokes, epilepsy, and other brain related disorders. More than that, we were in the "real" hospital now, where each nurse has 5-6 patients every shift, which often seem like 7-8 given the demands of specific, individual patients. Like Mr. Luskey, a deaf patient recovering from some kind of neurological problem (happily, each patient's privacy is surprisingly well protected), who in his frustrated inability to communicate would yell, moan and occasionally throw things to make his point about today's menu or TV choices. And halfway through that last week a young mentally retarded woman was admitted, who was terrified of this new environment. Whenever her mother wasn't present (which ended up being to be most of the time), she would howl and moan in general fear and anxiety.

The nurses would do what they could to comfort her, and Mr. L. for that matter, but all the rooms are arranged in a circle that faces the center nurse's station, and so the cries were unavoidable, door shut or not. And after awhile, given the pressures of the job, most of the nurses would assume that veneer of professionalism to get past the straightforward pain of listening to this kind of unhappiness for a 12 hour shift, and seem, finally, to not hear the bedlam ringing through the hall. It was a little like that terrible opening scene in the film version of Amadeus, when Salieri is in the asylum surrounded by the chaos of the insane and the discarded. It is the panoply of sound that you remember from the scene. And these similar emotional triggers are just not, perhaps naively, what one expects to encounter in a modern hospital.

(Although, just as a side bar, I suppose I think of Amadeus and Salieri in this context because for awhile there while Sonja was still in the ICU and deep in her drug driven delirium, she was convinced that F. Murray Abraham was a patient in the room next door. In truth the guy next to us did have a darker, sort of swarthy Fmurray thing going on, but as they were both completely bedridden I to this day have no idea how she got any kind of a look at him to jump start such a fantasy, or why Fmurray in the first place. She of course has no memory of this at all. Another mystery).

Lastly, and happily, I was continually struck by, overwhelmed by, the simple day to day kindness of strangers. I've spoken before in these pages about the thunderous blessings provided by our many friends and family. But it needs to be mentioned as well how many people took the time to just say something kind, or personal, or caring. The guys at the Finger Lakes Coffee emporium in the lobby from whom I got my morning Ginger Oolong, and came to refer to me as Mr. Tea, pouring the cup without asking. The cashier Beth in the (shudder) Cafeteria who always took the time to chat. The best of the nurses, some of whom have a capacity for caring and service that far outstrips their already formidable range of knowledge and skill.

And most strikingly, all the "unseen" staff, the men and women, mostly African American, that stock the closets and bring the food trays and empty the trash. There is a class structure in an organization as large as a major hospital, if only economic, and yet many of these folks were the kindest and most sincere people we met. Saying good morning or even just hello as they worked became for me I suppose a way of reaching out for connection, and though sometimes surprised, they were unfailingly kind and genuinely caring. There is nothing condescending in this, at least for me. They taught me a great deal, and I won't forget any of them.

And so there you are. We're back now. All organs are intact, and she's getting stronger as we speak (she just arose from our funky, low-rise couch all by herself!). The next posting on this sight will hopefully be from the Wonder Patient herself, so stay tuned.



And thanks for everything.......

-- Paul