Tuesday, August 26, 2008

A different Jan? The same Jan?

After the rupture of her aneurysm, Jan became a different person. After her aneurysm ruptured Jan is still the same person. Who really is Jan?

Jan is both.

Deep down, she still is the same girl with an iron determination to do her best and some more in every task she takes on. She is the artistic and creative spirit many came to know. She is the musician that can hear when someone among dozens has gone out of tune or out of step with a song. She is the same passionate and sensitive woman, also the one who will not put up with anybody's nonsense with a big smile. Deep down, Jan is the same; the same Jan still lives in her body.

Closer to the surface, where we get to interact with Jan's feelings, ideas and her physical presence, Jan is not the same.

Aphasia is more than having some broken links that make more difficult to go between ideas and words. She says that when we talk, my brain connects almost effortlessly my ideas with the choice of the right words and then tells the muscles in my mouth and throat how to make the sounds to produce the words. Speaking has always been so easy for me that I never stopped to consider how much it takes to do it.

For her, the task is a lot harder; she formulates her ideas just like me, but then, the speech program in her brain goes frantically running through all the files in her head, looking for the right word, sometimes she can't find the word; sometimes when she can, her brain has trouble sending the orders to the muscles in her mouth how to form the sounds to produce the words.
So she will often stutter sounds without meaning, even though the word is clear in her mind, or in her effort to say what she has in mind, she will use words that are not the ones she wanted to use... so, instead of saying, "wait, give me a minute", she may say "shut up, go away".

The message is the same, but the listener will likely react in a different way. This is what I often do.

Then, aphasia is also broken intake of information. It takes more time for her to understand completely what is being said to her. Oftentimes she asks for the message to be repeated. This is an essential need for her to really get what people say.

But most people can't understand that when talking to her. Most people just go on at the same speed they use with others, and when asked to repeat, they feel frustrated. She, then, feels sad and then frustrated because of her limitations.

Technically, that is aphasia. She has aphasia and I live with aphasia. Communication, to say the least, has an added layer of complexity, tension and pain.

However, as CS Lewis hinted "the pain now, is part of the happiness then" So, we both continue holding on to the hope that one day the Lord will restore her.


Wednesday, August 20, 2008

The art of balance

Balance is one of those sustaining principles in nature that shapes also our interactions with other people and even spills over into the ways we explain the world. A philosophy of balance would say: "not too much of this or not too much of that, and life will be OK."

Most people would agree with that, but Jan. In her life, balance is secondary; as long as she speaks truthfully and she is told the truth, it doesn't matter whether the world is upside down, including her own.

The most obvious proof that Jan struggles with balance is just to see her walking when she is tired. She woobles like a boat in troubled waters. Hesitant, she takes a few steps, stops, regains balance and then continues. Someone defined walking as a way of moving from one point to the another by throwing the body constantly out of balance, then moving one foot to regain the balance momentarily, just to go out of balance again...

This is Jan at her best. By keeping herself out of balance she keeps moving forward. It is a paradox, like her unshakable love for God.

A balanced life can be peaceful and predictable, safe. But, it can be choking and mediocre as well. Instead, she pushes the boundaries beyond that which is balanced. She likes being in the eye of the hurracaine.

Life with Jan is an experience similar to walking on a tightrope or walking on water. There is no offer for balance, rather, the offer is to move forward, to be daring, to accept the risk of being out of balance and out of the confort zone.

This is why I married her.

To keep the balance between a balanced and safe life and one that moves into unknown territories of life is an art. Achieving balance is important in life, as long as it does not block growth. There is no science to this. It is all an art.


Tuesday, August 12, 2008

Jan Un-ltd.

If Jan was a corporation she would choose a name ending with Unlimited.

Limitation is a word that does not exist in her vocabulary. There is pain, right neglect, memory gaps, aphasia, fatigue, and the long standing battle with medications; but in her world these are not limitations. She says that the real limitations are not in our bodies, but in the way we think.

Jan Un-ltd. went for a trip on her own. She went to spend some time over the weekend with a high school friend. KC is one of a kind. She was really created to match Jan. The two are uncapable of telling a lie. so, imagine their conversations... two women talking -probably at the same time-, friends for a long time, dishing no bull, just the real enchilada.

When I spoke with KC last Saturday, she was excited, prepared and blunt. That's KC. I remember that on my wedding day KC, was sitting next to the minister lady. Everyone was laughter and joy. At one point, KC came to the table were Jan and I were sitting and she produced a pocket knife, which she said, she uses to castrate the goats in her farm -ouch!-, and then added, that if I ever was mean to her friend Jan, she would come with her pocket knife and find me... you can imagine the dismayed look on the minister's face and of the guests that were listening. But that's just KC.

There are very few people with such history and influence on Jan. Refreshing to see the love between friends grow and deepen over so many years. This is why Jan Un-ltd. took the trip by herself, and also to have a break away from her husband...

I have learned so much about the endless possibilities of the human spirit just by watching Jan. The unsinkable and unlimited. There is a lot to be learned from those we consider broken, because out of their brokeness they have accessed territories of the soul, unknown to many of us.


Walking on water -5

Walking on water -5

There she is,
fragile and unfazed;
with her unwavering heart
overflowing as she steps
out of the boat
into the raging sea,
into the waves of fear,
into the promise made,
that one day
she would be restored .

By faith alone,
in the middle of the night,
she dares to walk on water
into the Healer’s arms.


Monday, August 04, 2008

A word for Jan

Jan is struggling with pain, depression and isolation.

Would you take a moment and send her a care note so she knows you, out there, still think of her?

Her own email address is:


You could make her day.

The center of Jan's brain

I imagine that if there was a cockpit, or a driver's sit in my body from where I control everything my body does; where I receive all the input from my 20 or more senses; or where I decode all my experience, it would be somewhere in the center of my brain. I'm not too far, because brain anatomists say that where all the right side functions and the left side functions coordinate and come into one is in a connector in the middle of the brain: the driver sit!

I don't know where or who is at the center of Jan's brain. It has moved because of the partial lobotomy she had during her aneurysm. The music is all there, safe in the right side. The numbers and words were all disorganized and are slowly being re-stored or filed in an orderly way, so Jan can access them. The movement of the right side is compromised, some days more than others, with what is called "right neglect". It is strange to think that her brain just decided to ignore her right side, to neglect to pay attention to it. So, when Jan moves her right hand or foot, she has to concentrate on that action. I don't remember when was the last time I paid attention to my right side, it probably was when I hit a bench with my right knee that sent me hopping on my left foot in pain. Jan does this often. She forgets that she has a right side and is reminded when she has hit something or she has put her right fingers in the hot soup. Ouch!!

Last night, at about 3am she woke up with shooting pains in her right leg. I asked her, are you OK? what's the matter? to which she responded: AAAGHHH! OOOOHHH! STOP, STOP, PLEASE STOP! This went on for about 3 minutes, while she was holding her right leg up in the air. Then, she pointed to something in her night table. I could barely see with the light from outside what she was pointing at. She became very frustrated and still with little command in her words she said "I, I... headache". I grabbed the bottle of painkillers and gave her one with water. She fell asleep soon after.

Over the last few weeks, my biggest struggle is with her belief that I am trying to make her heal faster -which would be nice if I had that power--, and my belief that I am being as compassionate and caring with her as I can; and when I reach my limits, I continue beyond just by pure grace of God.

Really, there are times when I don't know with whom I am talking. The woman who sleeps in my bed feels like a stranger, as the one that feels attacked or criticized for no reason or cries because of depression forced on her by medications. Who is in the driver sit of Jan's brain? Does she recognize herself? or has she blended her identity with her aphasia and right neglect? I try to talk to the Jan I knew, but often it backfires.

In my brain, I struggle with two voices, one that says:
-you didn't bargain for this. You should've been running a long time ago. It's time to counts your losses and pack; and so forth.
This voice sounds like a victim, like someone really wounded, like a child who has lost his candy.

The other voice sounds calmer, it is the one that says:
"you are your word, if you make a pledge, you are obliged to fulfill it. The greatest love is to give your live for someone. Pain is as much a part of life as is love and happiness, and, they are not mutually exclusive. Jan needs you and is waiting for you, go now..."

So, I wonder, what's going on in the center of Jan's brain. As for mine, I'm beginning to discover how my brain's center has changed...