Friday, August 23, 2013

It's Marty's Birthday

Today is Marty’s 59th birthday.  

Today we are nine years post diagnosis of her multiple sclerosis.  Today we are eight years past her ruptured aneurysm.  Today we are seven years past her last stroke.

In those years Marty has been in the hospital literally dozens of times, endured brain surgeries, countless indelicate procedures, taken way too many antibiotics and fought against death more times than I care to recount.

In those years Marty has lost her ability to care for herself, to walk, to drive, to work, to think clearly and independently.  In those years Marty’s life, our lives, our perspective and basic understanding of each other and the people around us has radically changed.

In those years Marty has seen her baby girl graduate from college, twice.  She has danced at her daughter’s wedding, seen the birth of three grandchildren and kissed each one as they were baptized.

In those years since the strokes Marty has seen both of her children grow, develop more independence and thrive in their own lives with their own families.

In those years Marty has touched her ailing mother and eventually buried her, and she let go of part of her history, her past.

In those years Marty has touched and affected the lives of countless strangers and friends who have come to know her in her “new normal”.  Marty has brought new people into our lives we would never have know otherwise and we are better for it and so are those new people.

In those years Marty has beaten the odds, she has survived an uncompromising disease and disability.  In those years Marty has exemplified Dylan Thomas’s thoughts about, “do not go gently into that good night.”  In her own inimitable fashion she has “raged against the dying of the light.”  In those years Marty has become the symbol of living through adversity.

In those tumultuous days, weeks, months and years since the first stroke, when no one thought she would live or come home Marty has felt pain, loneliness, fear, hopelessness and love.  Marty has seen the love of her family, she has felt the love of a husband, she has known the loyalty and steadfastness of her children.  

In the years since the events Marty has taken a rare and dangerous survival trek and because she chose to survive, because she did survive, she wins, she gets to know something many will never know, on this her birthday, she knows she is loved without pause and without condition.

It’s a really difficult trade, but sometimes you have no choice and you must search for victories.  

“And the greatest of these is love”.

Tuesday, August 6, 2013

God Envy

I have God envy.

No I’m not envious of God though the whole omnipotent omnipresent thing does have its appeal, especially during football season.  Red Raider and Cowboy fans would be happy happy. 
I am envious of how some people are able to live and accept the trials and tribulations of life by their faith in God.

I have good friends, friends who I admire, friends who I respect, friends who have gone through stuff, who have had trials and tests in their lives and I envy how they can grab hold of their faith, turn to their God and lay their burdens at God’s feet.  

I sit in a combination of admiration and envy of those fellow travelers, fellow Christians, who can really “give it to God and let go” and they are able to really let go.  I don’t know how to do that, maybe my faith, my understanding is too weak, maybe I’m too much of a narcissist to think its okay for me to let go of my obsession.

I don’t know if my friends really do let go and then blithely walk away unburdened and unstressed but the simple act of letting go for God seems to help them through their own tribulations.  I envy that; I can’t find a way to let God have my burdens, I can’t turn over my angst and anxiety to God.
I try but I can’t turn off my head, I can’t stop the adrenaline.   

Marty gets sick, Marty seems tired, Marty coughs, Marty says “oh”, my ears perk up like a dogs and my adrenal glands sputter and cough and kick into gear and the juices flow and anxiety awakens and I can’t turn it off.  

I look at my wife, I look at where we have been and what we have been through and then I find myself looking at the road ahead and my nerves start to rattle and hum.  I feel it, I feel it all over, and to quote the Troggs “I feel it in my fingers, I feel it in my bones.”

My anxiety about Marty’s condition(s) is without a doubt my steepest climb to normalcy and the ever elusive contentment.  It makes it hard to focus on anything, it makes it hard to live a fulfilled life, it makes it hard to be nice.  It is a complete pain in the ass.

I’ve tried, I’ve tried to say, “Okay, I’ve done everything I need and can do, it’s now up to …..Whatever.”  I take a deep breath and walk away and try and make a conscious decision to turn my worry meter off, I then turn around and walk right back into Marty’s room where I start going over her medicine, checking her machines, checking everything to make sure we are not causing a problem.  

I am going to cure her, I know I am. 

I know I am not going to cure her, I also know I am not going to shed my role as an anxiety ridden, worrying, hovering caregiver.

It’s clear to me, I know I don’t have the faith of some of my friends, I’ve been aware of that most of my life.  It’s a hard thing to admit, it’s a hard thing for me to understand.  At times I’m afraid of my doubts and I think that if I admit those doubts then the scary God some want us to worship will rain hell on my head.  At times I think that my doubt is why I can’t “give it to God”.

I want to give this worry, this constant sense of dread to God, hell, I want to give it to anyone, it makes me tired, it makes me grumpy, it makes me less than what I want to be.  

I guess it also defines me as human, as a concerned caregiver who loves his wife and who wants to believe in something greater.  It makes me a man who has a very tenuous hold on his faith, but ultimately believes God wants us to fully live and that part of fully living and loving is, we worry, part of how we keep faith with each other is that we feel pain, hurt and anxiety when another of us is broken.

I admire the ability to set things aside  I can’t get there now, I can’t get over the fact that I feel responsible, that I feel the need to control, that by paying hyper attention we will get through the next day.  I think that’s what God really wants from me today.  

I wish it were different.

Saturday, August 3, 2013

Caregving Upheaval

It was our first Christmas with our first born, Matthew.  We were in Dalhart Texas some 600 miles from our fairly new home in Paris Texas.  Matt was only 3 months old and Marty took the call from our new nanny in Paris.  The news was bad, catastrophic, as any new working parent can understand; the sitter wasn’t going to be able to keep Matt anymore due to some health issues.  Christmas was turned on its head as we tried to figure out child care for our new born baby.

We are going through a similar upheaval with our current caregivers, only this time I’m the one dealing with it.  I suppose its a little payback for that Christmas years ago when Marty took the brunt of the responsibility.

We have four caregivers.  Two, Renea and Nykkie, who are sisters, have been with us over seven years.  They have been with us from the start of this odyssey.  That’s really pretty remarkably in the care giving business.  We have two more, one, Erica, has been with us over three years and the last, another Renee, has been around almost two years.  

When you have to trust the life of your loved one to other people, when you have other people essentially living in your house with you, continuity and consistency are a God send. We have been lucky.

Renea recently finished her PhD in psychology and not so remarkably is going out in the world to ply her new trade for much better compensation.  Marty and I are very happy sad about this.  Renea came to our house when we were in turmoil trying to find our way in our new life.  I needed someone I could trust, I needed someone who I knew would be there to help me, we found Renea and she brought a sense of calm to my life.

 Nykkie has been with us for two stints but is the one who has been working all day most days for the last five years.  She loves Marty, she loves our family, she is a constant in our lives and is like our 2nd daughter.  Dr. Renea has inspired sister Nykkie to go back to school to get her RN.  She must now work nights only to go through a compressed and rigorous nursing program, more happy sad times for Marty and husband.  

It’s an upheaval.

I have always jealously guarded my personal space.  Its uncomfortable having someone in your home with you 24 hours a day, it makes it hard to run to the fridge in the middle of the night in your boxer briefs.  You have to learn when and how to do that, it takes time to acclimate yourself to the extra body.  Having someone there that you know, that sat in hospital rooms with you,  has held your wife’s hand as she went through difficult procedures, that has given you the confidence you are doing the right things is incalculably valuable.  

Changing all of this, changing the personalities, changing the guard is a big deal.

I don’t mean to intimate that it is the same as losing child care when you desperately need it.  I can cover with Marty, I don’t have to leave the house to work, I can do all of the things the caregivers do, I just can’t do it all of the time and have any ability to take care of the rest of life.  Caring for Marty is not a one person task…it just isn’t.  

Renea, Nykkie, Erica and Renee do more than just watch and bathe.  They are the buffer to my frustration with our life’s situation and keep me in check and they are the people who do the dirty work every day every hour work with Marty.  They spare me, they save Marty.

It’s a big deal when we have a defection.  We have kissed a lot of caregivers to find the four princesses we now have and I’m not sure I’m up to kissing that many new faces to find another keeper.

Fortunately, we have found a cousin to Erica, LaShonda, who just completed her first work week with us.  She came to work, she was cheerful, she was careful, she was on time and she didn’t scare Marty.  She appears to be a keeper.

All the same, it takes time, energy, effort and repetition for all of us to start to establish the kind of trust I(we) need for this to be truly successful.  It will take us days of being with La Shonda, it will take weeks of working with La Shonda and weeks of dealing with Nykkie’s new night schedule to get to a place of comfort and trust.  

Life moves on, people, people you love and cherish, come into your life move on and do different and better things.  We learned from Renea, we will continue to learn from Nykkie and Renee and Erica and now La Shonda.  

We will continue our life with this company of people, people who never would have been in our lives if not for Marty and her journey.  It’s funny how love for strangers can come to you.