Thursday, July 26, 2007

My left brain and I

Ever since Jan was rushed to the hospital I became intrigued, thirsty and a times desperate for more knowledge about how the brain works. I wanted an answer to my questions: how much function is Jan going to recover? When can I say this is as good as it gets?

Unfortunately the specialists limited their answers to euphemisms. I didn’t know if they refused to tell me more of what they knew or they were just being candid when they said that they knew very little about how the brain works and heals; that Jan’s determination would define how far she could go in her healing. This, of course, was an invitation to go find more information.

I remember the first time I took her for a wheelchair trip around the hospital. She had been there almost two months. She could hardly sit straight and carried her head to the side. The right side of her head had her usual long hair; the left side had been shaved. She looked like one of these modern girls with a weird hairdo. She had a big dent about 4 inches long by 3 inches wide and an inch deep. The surgeon had kept the flap bones of her skull out to give her brain some room to swell. She could not talk, nor could she stay focused more than 10 minutes. She cried unexpectedly and then she would just drop her head without any strength like a rag doll. The surgeon had surgically removed the portion where the language centre was originally. How was Jan ever going to speak again?

That was over a year ago. Somehow Jan’s brain has re-written the language program in another part of her cortex. Medical science doesn’t know how this happens, but it happens. Slowly, over many months, Jan has rebuilt her ability to speak. She still can’t find some words, but her conversations are getting better all the time. Her right side is regaining feeling and movement. So, what happened in her brain? What part told the other to help? What part re-wrote the dictionaries, What part linked them with memories and emotions? Which part creates the words? which part understands the words? Which part reads the non-spoken part of communication such as body language? How does it all come together?

I wanted to know how far Jan would heal, how I could help. I wanted to know more about her brain and mine.

So, I began reading all that came to my hands about the brain and its injuries, about it incredible capacity to rebuild itself, about the wonderful plasticity that shows its capacity to change and adapt all the time.

(will continue tomorrow)

Tuesday, July 24, 2007

Doing well

Hi all:

If there is anyone out there in cyberspace reading this blog, I want to make a statement of ownership. All the views in this blog deal with my views and opinions about Jan's journey from the top of her life to the edge of death and back. Other that a couple of lines she wrote months ago. The rest is all from my own head and heart. Jan may or may not agree with my views. if you want to know how she is feeling, you better talk to her (yes! albeit slow, she can talk to you on the phone.)

Life as leader

I am getting as much from life as I am putting into it. That's right! I only get what I give. If I give sadness, that's what I get. If I give hope that's what I get. If I take myself out of the game, that's what I get: I'm left out. That is a basic lesson in life. That is essential knowledge for a leader.

Jan is a leader in life. She is doing wonderfully. She was taking a drug to control seizures that produced many side effects: sleepiness, reduce language ability, nausea, irritability, etc. Last week her physician changed the medication and she is doing woderfully now. She even took hope when the physician told her that if the seizures do not recurr in a year, she would be free from all medication! Halleluja!

I was travelling for a week, when I came back this morning I was the one who was speechless, she was moving her right side almost freely and her speech was excellent.

I love my Jan wherever she is in her recovery, but this morning my heart filled with hope that she will regain even more functions just because her hope and belief are so strong. She is getting what she is putting in life. All the physicians that have seen Jan since her illness have repeated that the degree of recovery of functions depends mostly on the patient's determination to get well. Believe me, in her circumstances, I have not seen anyone as determined as Jan.

An hour after I arrived, she left for a three day camping with all the females from her family! She is able and expects everyone else to hold her able. Beginning now, I am holding her able as well. This is the end of treating her as a disabled person. Besides, she gets more support when people hold her able.

I know she is having a lot of fun right now.


Thursday, July 05, 2007

How Jan is overcoming her aneurysm

Jan had an aneurysm on February, 2006. The first prognosis was not good, but as time went by, a more optimistic picture emerged. Two lessons came from the many meetings with doctors and friends: first, no one knows how the brain really works or how it heals; second, that the healing is as unique as each individual is, that a big factor in the healing lays within the individual, in the determination to get well.

The following reflects these lessons.

Jan cannot find the words
-She can’t find them in her mouth-.
Jan is a painter without a canvas,
a musician without an instrument.
Jan can see the words
-she has them in her head-;
like a palette of a thousand colours,
endless scores of songs,
words to shape visions,
words to build belief
but Jan cannot find them now,
she is in a brawl with aphasia.

Jan’s world was born of words:
a universe painted with words
chiselled out of adjectives and nouns,
her life is a watercolour of verbs,
Jan was born a wordsmith
her purpose was to talk life,
to make words of truth
to make words of beauty
to make words of goodness.
Nowadays, life is at a standstill,
aphasia withholds her words.

In the most fundamental sense
Jan is a poet, Jan is a maker.
With broken words
She makes God present
She makes life urgent
She makes music essential
Jan is remaking her tools
the tools aphasia shattered
Jan will write new poems
Jan will paint new paintings
Jan will sing new songs
because her faith in God
and her love for words
are bigger than aphasia.


Monday, July 02, 2007

The strain of Aphasia

Communication between husband and wife is a challenge under normal circumstances. Communication with a spouse with Aphasia is a similar challenge, but multiplied dozens of times. Two major factors of danger and opportunity that Aphasia brings into the equation are the lack of words to convey clearly and effectively ideas; and the inflexibility of thought that accompanies the recovery from the brain injury tha caused the Aphasia.

We are strained to the max in our communication. She is frustrated that she is unable to communicate as effectively as before, I am frustrated because understanding her is more of an emotional battle than a linguistic process. We spend the normal level of energy communicating and then lots of emotional energy that we have to invest trying to disentangle emotional reactivity from concepts and ideas.

I suspect that Jan relies more in her limbic system to communicate than any other part of her brain. "Wearing her feelings on her sleeve" is another way of saying that emotion supercedes thought and words.

Was this always the case? I don't information from a long period of time before the aneurysm to be able to answer the question, but from anecdotal information, she seems to have been an "emotional" person.

At the same time, she worked very hard at raising her communication to a high level so she could live from what she calls "a place of integrity"; she participated in many courses and worked under supervision with a personal coach developing clarity, integrity, and truthfulness in all of her communications. She excelled at this, but there was a question of balancing integrity with compassion. She expected all to be at the same level she was. Nevertheless, truth without compassion can only produce conflict. Compassion without truth can only produce delusion. How can we communicate in truth and compassion at the same time? How can we confront people with the truth (of course the beholder's version) and produce peace?

In spite of the aphasia, she insist on telling things as she sees them (her truth), which is something to admire, but at the same time, she shows inflexibility and inability to take feedback. Our conversations lately are more verbal battlefields than enjoyable exchanges where we can know more about each other.

We are under tremendous pressure to find a balance and protect the relationship. She will have aphasia for a while, so we must change something, and the burden falls on me, to be able to have reasonable conversations. The alternatives are so bleak that we just have to continue reminding ourselves of our pledges to be there for each other...