Tuesday, August 23, 2011

A Biting Response

The act and art of physical therapy for a stroke patient should be part of any ongoing recovery strategy, it’s not, but it should be.  We have had the great good fortune to have a physical therapist visit our home twice a week for the last month.  Great and Wise thought it a good idea for Marty to work with a therapist to help with her overall strength, her flexibility and improve the use of her right arm, broken over a year ago.  
The therapist who is working with Marty is reasonably gentle, knowledgeable, relaxed and a good conversationalist, all important traits to do therapy with Marty.  The ability to hold a reasonable conversation is a must for me as I am always full of questions and pretty much always present, I have the need to supervise.
Last week the therapist was dutifully stretching and taxing Marty’s right arm, the one she broke in March of 2010.  The therapist was supporting Marty’s right arm with her right hand while reaching across Marty with her left arm to pull Marty’s arm up and across the front of her body; thus stretching and taxing.  The break in Marty’s arm has healed but because of her general lack of strength and mobility its very stiff so the amount and the direction the therapist was moving it hurts, I could see it in Marty’s face.  

I sat across the breakfast table watching the process unfold; the therapist slowly moving Marty’s arm to the point where Marty would sort of grimace and the say “Quit it,” then back again.  Generally I accept and reasonably tolerate this sort of benign abuse of Marty; it really is causing pain for her a good cause.  I don’t like it but truly the means justify the end and I Marty knows that, most of the time.  

As I sat watching the process and making mental notes for when I would do what the therapist was doing I caught Marty’s eye just briefly and saw the flash in her eye, I saw that part of her that hates the lack of control in her new life start to surface.  I could see it before it happened as Marty said stop and grimaced each time the therapist moved Marty’s arm to the point of pain and each time she moved her own arm slowly in front of Marty’s face.  Marty’s eyes lit up, Marty’s brain engaged, old Marty started to resurface as she grimaced, as she felt helpless at stopping the pain, as she thought about her only way to get release from the pain and assert her control.

I started to say something but I was a bit slow on the uptick and before I could warn the therapist Marty reached over with her head and tried to clamp her teeth into the fleshy part of the therapist’ bicep.  I swear I could see it in Marty’s eyes before she did it, I could see in her face she going to put a stop to this nonsense in the only way she could.

The therapist stopped quickly, and pulled her arm out of harm’s way.  I said, “Marty, don’t you dare,” and the therapist retreated and the pain in Marty’s arm stopped, immediately, exactly what my diminished wife wanted to accomplish, stop hurting me.

Her response, biting the arm that was hurting her arm, was almost childlike; it was a way for her to gain control, a way for the person who had the least control to assert her will.  It was clearly a premeditated action; Marty knew exactly what she was doing, she planned it, she exerted control in the only way a person with limited physical capabilities can, she consciously used the tools, she had at hand, so to speak.  Marty has always, always used her mouth to control the outcome of events, she just never bit anyone before, she simply outtalked everyone.

There are times, moments, when Marty exerts control over her life, over her circumstances and says in her actions, “I’m done, quit damn it.”  Sometimes she just shuts down and won’t talk or won’t participate, she becomes passive aggressive.  There are other times when she’s simply had enough of being handled, of being poked, prodded, moved and hurt and she drops the whole passive part of that act.  The lesson learned is if you are going to push her that far, it’s best not present her with an option; she might just take a bite.

Wednesday, August 17, 2011

Lookin' for Wood

I’m not a superstitious guy.  But, just to hedge my bets; I never walk under a ladder, which seems pretty prudent regardless of superstition.  I also will occasionally spit when a black cat crosses my path and I immediately seek some wood to knock on when talking about good things happening in my life.

With that being said you will understand why I’m knocking because I want to report that in the grand scheme of things Marty has really been “healthy” lately; hear the knocking on wood? 

She has not been in the hospital for almost 18 months.  We haven’t seen the inside of an emergency room in almost a year and we only went to see Great and Wise a couple of weeks ago so I could brag in person about beating him in scrabble.  Rap, rap, rap on real wood.

Over the last six years we have seen more of doctor’s offices and various hospitals than many see in a life time.  There are a lot of people in this world who have never been hospitalized.  For us, the nurses on 3rd floor south at Providence Hospital knew Marty by name.  For a while we had personal relationships with most of the ER doctors at our favorite emergency room and the nurses would come in and ask about our kids.  I liked them all but would have preferred to have met and known them from the Cryin’ Shame bar down the street.

Marty has survived so much.  She has lived through so many things so many times it’s a bit mind numbing.  From seizures to pneumonia to urinary tract infections to broken limbs, she has done it all, multiple times.  At one point in time, at least in my mind, I just knew she would ultimately lose her battle for life to some rare infection with an obscure Latin name.

As days have moved to weeks, months and years things have gradually changed, we have learned, we have grown, we have gotten better at dealing with illness and the illnesses have become more sporadic. We have not conquered the most difficult part of stroke recovery, chronic and constant illness,  but we have fought it to a draw. 

The disability part of the strokes is hard but it’s never been the hardest part, the wheelchair has never been the most frightening part of the strokes.  The frailty, the constant illnesses and need to be on constant guard for a new sickness has been the most difficult, stressful part of our new normal.  It has been the only prayer I have prayed, to give us some relief from the constant infections, the repeated trips to the hospital.  I’ve not prayed for a cure, I’ve not petitioned for Marty to walk or talk, I have simply prayed for Marty to feel better longer.

For the last months instead of sitting in Great and Wise’s waiting room, instead of taking antibiotics, instead of getting Marty stuck in the arm to get blood we have been enjoying the peace and comfort of being infection free.  I’m not watching her blood pressure or her oxygen levels like an old maid, I’m not trying to shoe horn a doctor’s appointment into our day, I’m not waking up in the morning with a surge of adrenalin wondering what bug has crept into Marty’s bloodstream threatening her life.

Marty clearly feels better.  Antibiotics have saved her life, but she simply doesn’t feel as good, as sharp when taking the medicine.  The length of time between bouts of upper respiratory infections or pneumonia have allowed her lungs to heal, to get stronger, to better support her in every way.  The very simple blessing of being well feels good and has a cumulative effect on her demeanor and her quality of life.

It is such a relief to not have to constantly be watching Marty for the next sign, it is freeing to be able to leave the house and not worry about what is happening at home.   It feels great to not sweat out a medical report.  I know Marty feels a sense of relief that I am not constantly watching her every breath, cough or wobble.  It is so much better to go see Great and Wise and not worry about test results but to talk about the scrabble words he uses that I don’t recognize, he’s a good scrabble player.

There are times in our lives where we want to celebrate but we are afraid because the celebration might somehow jinx the cause of the celebration.  That kind of thinking tends to limit celebrating the bright spots in a sometimes dark life.  Not being the superstitious kind of guy I’m thinking I’m going to do the happy dance to celebrate the past few weeks, while knocking on some real wood just to be safe.

Tuesday, August 9, 2011

An Old Video Tape

Our son and his wife celebrated their 8th wedding anniversary this weekend and I had the distinct honor of hosting my almost two year old grandson while they took some needed respite from parenthood.  Noah was the perfect house guest and in the eyes of his Grandpa is really very close to perfect.  When he looks at you with his almond shaped clear blue eyes and takes your hand and says, “Come on Pa,” what are you going to do?

You are going to go to the zoo early in the day to avoid the oppressive Texas heat, you are going to take him to the grocery store for snacks you think he will like, you are going to go to the park and slide down the slide that is just barely wide enough for your behind and you are going to revel in him clapping his hands saying, “Yeah” and “More.”

I’m not sure why, maybe I just needed to sit down and breathe and was burned out on  “Dora the Explorer” but on his last day here I popped in an old VHS Christmas tape (yes, I still have a VCR) Marty and I made with the kids way back when.  We made the tape to send to family and close friends for Christmas of 1994, its one step more narcissistic than the Christmas letter.  

The tape was originally my idea, just something different the Christmas letter to bring our faces to people we would not be seeing for the holidays.   Marty, took a good idea and made it better by adding humor, wit and sharpness to the family production.  She often made my ideas better; I just refused to believe it at the time.

The tape has the four of us parodying our lives at the time.  We have the typical 15 year old boy learning to drive with his mother wearing a crash helmet, the 12 year old girl constantly on the phone and me lip syncing Silent Night with Matt, Erin and Marty as my back-up singers.  Family and friends watched it, family and friends smiled and laughed.  It typified life with Marty, just a little bit over the top.

I wanted Noah to watch it because it was one of the  tapes I knew we had with Marty on it, the Marty before she was sick, the Grandma I want Noah and Lily and the baby to be named later to know.  I wanted Noah to see Grandma when she could walk, talk clearly and laugh easily. 
I know he recognized me because he pointed and said “Pa”.  I know he didn’t recognize his peach fuzzed 15 year old father to be, I don’t think he made the connection with Grandma, with Marty, she was too different for his two year old mind.

I watched this little eight minute tape with Noah and watched as my wife talked and laughed on the television.  I watched as she nuzzled her face next to mine and snickered at the idea of making this video and generally acted silly.  

My tears surprised me.  I have seen this video before; it’s a prized possession because of what it contains, my wife smiling, my wife laughing, my wife.  The tears welled, a small catch in the throat, pressure, then tears gently rolled down my cheeks.  The depth of my emotion surprised me a bit.
I wiped the tears, watched the video as Noah ran circles around me. Watching the snippets of our past helps me understand where we have been and reminds me of the imperfect but rich lives we had.  Watching Noah, he of the smooth, alabaster skin, of the easy smile, of the blue eyes reminds me of the blessings of our present and how Marty’s life, her essence will continue.

Watching and remembering the tracks of our lives always leaves me feeling, deeply.  Watching Marty as she was makes me wish I had been better at living in the moment back then.  Watching the past makes me regret the time wasted with minutia.  Being aware of what “used to be” pushes me to spend my time enjoying the simple pleasures of being with the people we love.  Noah didn’t recognize Marty in the video, but I did, and those memories make every day with her important.