Tuesday, June 18, 2013

She Still Plays

When you think about the science of playing the piano, your brain translating black marks on paper so the left part of your brain can tell the muscles of the right hand to move the fingers and push black and white keys in a rhythm to make music, it’s amazing.  

When I watch Marty sit at the piano, her arm mottled from medication, her right hand poised over the piano keys, her eyes intent on the music, her brain slowly calculating and making the complicated connection of the marks on the page to the keys on the piano, I am amazed..

The piano has always been a refuge for Marty.  A place to be an artist, a place to pound out frustrations, a place where she belonged, a place to bring people around her to sing or to simply listen.  The piano was the catalyst for recovery, the piano continues to be a test and exercise for her broken brain.

There was a time when Marty played and practiced the piano almost daily.  When we lived in Hillsboro she played for the community college’s choir.  Her hands would basically float across the key board and she could take a staid traditional hymn and rock it into a toe tapping gospel rendition in her head.  She once told me she cheated because she converted a lot of the notes into chords…..which to me seems pretty complicated but she played a lot and played well.
While her mind is compromised and her right hand is halting her understanding of the music is still there.  The brain is sometimes slow to translate the spots on the page to her hand, but she knows exactly what the spots mean, an F sharp, a C chord, a flat, an eighth note.  

The translation is stilted, at times there is hesitation in the playing, at other times she is as fluid with her right hand moving across the ivory keys as she ever was.  She occasionally plays the wrong note and she grimaces just a bit as the disharmony is apparent, but she keeps reading the music, she keeps playing the notes looking for the sharps and the flats and the rhythm of the music.

It’s worth the time to watch her eyes and to see her intensity as she reads the music.  I ask her if it comes easy, she says not at all.  She has to strain, she has to consciously act to read the notes and play the music, it’s not instinct, it’s not simply intuitive, it’s her broken brain translating a process she has always loved.

If you have just met Marty and hadn't had the chance to get to know her before the strokes you immediately develop an opinion of what she can do now and you see and believe that she is limited by the traumatic brain injuries.  If you watch her play the piano you form a different opinion of this woman who has been irrevocably changed, but not broken, by strokes.  Watching her play the piano you see someone who is different.

I think when she sits in front of the piano, her right foot on one of the pedals, her right hand hovering over the keys, her gaze on the familiar notes she gets lost in the music and she forgets for a brief time the strokes, her disease and her disability.  

I think when she gets lost in playing the music she feels free again, she feels in charge, her self- worth rises and she smiles.

I love to see her play.

Wednesday, June 12, 2013

Bone Crushing

There are times it is bone crushingly sad; occasionally the sadness of what has happened permeates every part of me.  It runs so deep and is so real it is almost a physical pain.  It never lasts long and it almost always happens late at night, at times when I feel most alone.

What has happened to Marty, to our life, is sad, it’s awful, it’s unimaginable to people who had lived such a charmed life, to people who hadn’t known much illness, to people who had seen little death and had lived lives of relative privilege and success.  

But it happened, the strokes happened, the life changing event erupted quickly.  The result, the consequence of the eruption is beyond sad.

The good news is that feeling sad; feeling the loss, feeling grief has become only a small part of our lives.  As time slowly moves us away from the days of the strokes, as the days of walking the black precipice has receded, so has the constancy of the sadness.  

The depth of the pain is there, the intensity of the grief is still present, but mostly it is set aside, hidden, tamped down as life necessarily continues.  Mostly, I just don’t think about it as often because there are too many other things to feel.

The truth is we laugh more than we cry, we joke more than we grieve, and we work hard at living a simple, scaled down life that is, at times, very hard.  

I see other people who must deal with overwhelming sadness, the people who have lost a child, the husband who has lost his wife to Alzheimer’s, the wife who has seen her husband succumb to disease to the point where neither spouse can recognize the other, and the soul mates that are now separated by death.  My Marty is here and present and knows who I am and that is my saving grace.

I get to hear Marty laugh and best of all I get to laugh with her; laughter was always one of the best parts of our marriage.  Marty knows me, she knows her children, she knows her grandchildren.  I don’t have to worry about Marty wandering off, I don’t have to worry about Marty taking the wrong medication, I don’t have to worry about her being afraid of me because I’m a stranger.  Through the muck of this life, Marty and her story of survival brings smiles to so many so how could you always be sad.

Our life is not smooth; it’s not what I would call easy.  It’s hard, in some ways and on some days it feels impossible.  We have missed out on so many opportunities, so many moments, so many events.  Like so many others in the world we have missed part of a life we had hoped on living, but at least we are still living and on the whole living well.  

Our journey through life has been seriously interrupted and we have had to deviate from a planned path or at least the idea of a path.  The interruption has been at times seriously sad, frightening, unbearably difficult and awe inspiring to me and to those who watch and admire Marty.

Occasionally a soul killing sadness grips me and starts to suffocate me.  We will always have the “what might have been” hang over our lives, we will have to carry a certain amount of sadness with us on our journey… it just is. 

 Fortunately, today, the happy times for Marty and the happy times for me outweigh the weight of the strokes, and the journey continues.

Wednesday, June 5, 2013

Negotiating Implants

Marty and I are in daily negotiations about getting her implants.  I tend to think she should get them, she says no way no how.  We are talking dental implants not the other kind…I personally like the natural stuff.

Marty has several upper teeth that are just not doing well.  They are loose and getting looser as a consequence of medicine and genetics.  As a disclaimer and clarification I have to say Marty was a fanatic about dental hygiene but it never mattered, she had bad gums and bone loss.  Having a third party take care of your teeth just makes the whole situation more tenuous.

We have been to see the oral surgeon, a doctor we shall call “Dr. Oral Surgeon”, twice.  He’s clearly skilled, has impeccable credentials, a really cool office, talks to Marty, talks to me and makes a lot of sense.  He’s not doing a hard sale on the implants but he really believes we have to do something in the not too distant future.  Implants, to me, seem to be the best “bridge” to the future for Marty, dental wise.

Marty says she likes him and she listens intently to what he is saying and the questions I ask.  On our first visit I introduced Marty to the doctor and started my usual patter, trying to put a human face on her.  I explained her medical history to Dr. Oral Surgeon and I explained her life history, briefly.  I told him that Marty was an educational psychologist who at one time worked educating family practice doctors.

Marty listened to my stories about her, and I could see her perk up about the time I started laying out her previous career.  She took the opportunity and looked at Dr. Surgeon and just as dryly as she could muster she said with an air of mental health arrogance, “And how do you feel about that?”  The business liaison lady who was standing there taking all of this immediately fell in love with Marty. 

As part of this whole negotiation process I’m trying to convince not only Marty, but myself, that these implants are the best thing for her, long term.  That’s different for me; I’m looking at this long term.  I have moved past the short term view, I have moved past the idea that Marty won’t be here much longer so long term cures are something to consider.  It’s kind of an odd thing to consider, but this is a different world view for me and for Marty.

When someone is chronically ill like Marty, when someone has walked on the edge of death, like Marty, thinking in terms of the out years seems capricious and fate tempting.  You look at things differently, you actually think about whether short term pain and discomfort is worth any gain because you might not experience the gain for very long.  This change has required a change in our decision making process, it has added a new level of complexity to the whole deal.  It’s good; it’s just a different view.

I also want Marty to make this decision, a decision that creates some risk and pain to her life, of her own volition.  Sometimes in caring for her I have to make executive decisions about her care without consulting or listening to her objections.  For example, she never ever wants to be in the hospital or go to the doctor.  That doesn’t make sense so sometimes I have to overrule her; she’s not a child, she’s an adult, but she is compromised, thus the negotiation.

Marty has been pretty adamant she was not digging the whole implant process; she has not budged on her position.  I finally told her that’s fine, that we should just continue to talk about it.  I told her I would bring up the idea of implants every now and then and that maybe we could come to the conclusion that she needed to have the work done.  

“Does that sound like a successful plan?” I asked.  “Do you think that will get us there?”

She looked at me, straight into my eyes, without a flicker of a grin and said, “I don’t know, it’s sure not my plan.”

That’s where we are.  She doesn’t want to do it; it’s not in her plans at all.  She is worried about the pain; she can’t get past the fact that her teeth don’t currently bother her.  I understand her trepidation, the whole dental thing freaks me out, I really don’t like the dentist.  Sorry, I had bad experiences early.

The good news is that we have options, or at least we don’t have to do anything now.  I fear if we wait too long our options will be limited and we don’t want that.  The other good news is that Marty Jean is fully engaged in the process and in her own inimitable fashion she is having her say.  

I like that part of Marty, I always have, it takes patience, but I like that part.  Now I just have to find a plan where we have agreement.  Our negotiations continue and somehow I feel like I’m in familiar territory…..the short end of the negotiation.