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.