Wednesday, April 26, 2006

First of all, it feels unbelievably good and relieving to log onto the calendar and see that people are starting to schedule their Mike visits here and there. This is a huge help, and a weight off my mind knowing that he has a lot of advocates and loving folks other than me to help him pass the time.

As of Wed evening: Mike has been moved to the stepped-down Neuro-Intensive Care Unit at the other building at Jefferson (where radiation happens). They call the building JHN. It stands for Jefferson Hospital for Neuroscience. It's located at 900 Walnut. Entrance on 9th between Walnut and Locust. Mike is in room 6613 (6th floor). It's a big single room that is monitored by cameras 24/7. The place has one crappy waiting room just opposite the elevators. Fortunately WaWa is basically downstairs.

Left a message with one of Drs. Evans and Andrews nurses requesting a sit-down family meeting with one or both of them upon their return from the neurosurgery conference in San Fran. She said it shouldn't be a problem and that Evans is really good about making these things happen and following through with them.

Talked to Mike's case worker at Jefferson today. She's the one who coordinates all the various aspects of his care - getting him transfered to a new place, getting him admitted to Magee, and figuring out how to arrange transportation from Magee to radiotherapy at Jefferson each weekday. This last piece is a real bugger. JeffSTAT ambulances could do it (for like $70 each day which they don't think insurance will cover). The case worker asked if Mike's family/friends could meet this need by piecing together a carpooling system. At first I said, "Absolutely." But then I thought, "That's just crazy." Mike's been restrained in his bed for the past three weeks on and off. He is often disoriented as to where he is and if he weren't restrained in his bed, he would surely just walk away. No one of us, or even two of us together, could safely transport Mike to and from radiation therapy in our cars. He's too unpredictable. He might get out of the car, mess with stuff... It's simply unsafe. I explained this to the case worker and she said she'll start brainstorming other creative solutions.

Finally, I want to thank my sister-in-law, Victoria, for a book she got for me that I received yesterday, "The Man who Mistook His Wife for a Hat," by Oliver Sacks. It's a collection of essays by a neurologist studying various eccentric people with neurological disorders. One of the essays, "The Lost Mariner," is about a "charming, intelligent, memoryless Jimmie G. who was a fine-looking man, with a curly bush of grey hair, a healthy and handsome 49 year old. To read it helps shed light on what it must feel like to be Mike right now and to understand the importance of familiar people.

Jimmie G. was cheerful, friendly, and warm." He had his long term memory up until his was about 19, but he could not form new memories.

"...I found an extreme and extraordinary loss of recent memory - so that whatever was said or shown to him was apt to be forgotten in a few seconds' time. Thus I laid out my watch, my tie, and my glasses on the desk, covered them, and asked him to remember these. Then, after a minute's chat, I asked him what I had put under the cover. He remembered none of them - or indeed that I had even asked him to remember. "

"...I found myself was wrung with emotion - it was heartbreaking, it was absurd, it was deeply perplexing, to think of his life lost in limbo, dissolving. 'He is, as it were,' I wrote in my notes, 'isolated in a single moment of being, with a moat or lacuna of forgetting all round him...He is a man without a past (or future), stuck in a constantly changing, meaningless moment.'"

Sacks starts the chapter with a passage by Luis Bunuel:

"You have to begin to lose your memory, if only in bits and pieces, to realise that memory is what makes our lives. Life without memory is no life at all ... Our memory is our coherence, our reason, our feeling, even our action. Without it, we are nothing."

And yet, Sacks closes the chapter with an extraordinary anecdote. Jimmie G. had been a religious man in his past, and even with no short-term memory, when he entered a Church, he was focused, attentive, and able to recite prayers and seemed fulfilled in the moment of the experience. Sacks writes, "I was moved, profoundly moved and impressed, because I saw here an intensity and steadiness of attention and concentration that I had never seen before in him or conceived him capable of... Fully, intensely, quietly, in the quietude of absolute concentration and attention, he entered and partook of the Holy Communion. He was wholly held, absorbed, by a feeling, an act, an act of his whole being, which carried feeling and meaning in an organic continuity and unity, a continuity and unity so seamless it could not permit any break."

And while Mike is not a religious man, he has his own versions of “acts that absorb his whole being,” - the love and laughter of friends, the ritualistic familiarity of a ComedySportz show, banter with Kebbeh.

You know, I bet if we placed him on stage he could still recite the ref spiel (sp?) without missing a beat. And I guarantee if surrounded by friends, at a Csz show, or goofing with Kevin, he would be completely absorbed, if only for the duration of the experience.

Perhaps Bunuel was wrong – perhaps memory doesn’t make life what it is, perhaps it’s the feelings we experience through memory that make life what it is.


Anonymous said...

regarding the bax and mike time dilemma: your heart and instincts are RIGHT ON. keeping trusting them. also trust them when they say "hey what about me? i need a little something for me" --t

Anonymous said...

So waitaminit - the insurance company will pay hundreds of thousands of dollars for Mike's treatment, but they won't pay $70 to get him there? Absurd.

Cheryl said...

A co-worker of mine is a big fan of Oliver Sacks - when I've talked w/her about Mike, she's suggested getting in contact w/him. So, this is from his website: www.oliversacks.com under frequently asked questions.

Q: How can I contact Dr. Sacks?
Dr. Sacks does not use computers or email and is not available to speak with potential patients or fans over the phone. He does, however, read letters and faxes and tries his best to respond when possible. He receives mail at 2 Horatio Street #3G, New York, NY 10014 USA. His fax number is 212-633-8928. Please be sure to include a return address or fax number on your correspondence.

Q: How can I make an appointment to see Dr. Sacks?
Dr. Sacks sees a limited number of patients in his offices at the NYU-Mt. Sinai Comprehensive Epilepsy Center. He does not see children. To inquire about making an appointment, please have your physician fax, or mail, a brief letter to the address above. Include a short medical history and information about the patient's current situation, medications, etc. DO NOT include extensive medical records or send films.

beth said...

Dr. Sacks does not use the computer, but he publicizes what appears to be his home address????

He does not watch enough Law & Order - he is just asking for trouble.

francine said...

just a word about Sacks...I love him! I've read a bunch of stuff by him and saw him read from one of his most recent book a couple of years ago at the phila library. He's just SO aware of the REAL person and not just the illness.

Peter said...

I visited Mike tonight from 6:30 to about 7:15. He was fiddling with the TV remote. He wasn't really settling on anything in particular. Surf, surf, surf. I announced myself. He extended his hand immediately to shake mine when I came in. "Friend Kohn." We had some simple chit chat, in that he would answer when I initiated. He said he had eaten already, and after some thought answered that he had radiation today. He didn't have any strong opinion about this new room to the previous one (this one is a bit drab and lacks a window). In fact, I noticed for the first time that lots of his answers were noncommittal ("that could be so," "that just might be," "huh, is that so," stuff like that). When I started to go through the stuff in the room, searching for things to discuss, I asked if he enjoyed leafing through the magazines at all. He volunteered that one of them had large enough type for him to read. There was a note of enthusiasm in his voice, so I tried to find it (not there), and while looking I mentioned that large type versions of some magazines existed and he thought that was a good idea. I also asked him if his sense of the type size in the magazine he referred to might be due to improvement in his visual acuity. He said he couldn't tell but that he hoped so. (A gross neuro exam was performed while I was there. I think the magazine comment he made might be wishful thinking. Otherwise, the only thing he got wrong in the exam was the month (he said Feb.) and the name of the hospital (he admitted he didn't know -- which I thought was admirably self-aware, better than guessing). He's getting a CT scan tonight, too, and some blood work, acc. to the resident. Are they worried that his visual fields might be narrowing, or checking on progress of radiation?) More surfing. I mentioned the Polaroid camera and the idea of taking pictures of people who visit. No response. I mentioned a college friend who had recently had twin boys (someone else, not me). He instantly remembered the person and gave his nickname. Discussed other people who Bush could have chosen as a new press secretary. I couldn't think of Sean Hannity's last name, but Mike remembered it instantly. Some shut eye, then back to surfing. I decided to ask him some tougher questions. "What do you think about from moment to moment, Mike?" "What do I think about?" "Yes, what do you think about?" No response. (I couldn't tell if he didn't feel like answering such a stupid, intrusive question, or if the question gets lost while he's working on answering it.) More shut eye. I decided on another tough one. "What should people do when they visit, Mike?" "Visit you?" "No, visit you. Should they engage you in conversation, not engage you in conversation? Stay long, not stay long." "That's hard to say." Another noncommittal answer? I pressed. "Well, if I were you, I might feel obligated to answer someone who began conversations with me over and over again. I might get annoyed." Pause. "That is a problem with this representation," he responded. Situation, representation, whatever -- I knew what he meant, and so did he. Though I was still having trouble figuring out if he was just agreeing to be polite, or whether he really felt that way. Nevertheless, I shook his hand goodbye. "I haven't been here in a while," I admitted to him. "Do you have a sense of that, or can't you tell?" "I can't really tell," he said. We said goodbye again.