Wednesday, June 29, 2011

Poor, Poor Me

Poor, poor pitiful me. Poor, poor, pitiful me. Oh these boys won’t let me be. Lord have mercy on me. Woe, woe is me.

 Warren Zevon

Oh woe is me, life is too hard. I don’t know how we ever got to this place, why is this happening? It happens in a flash, I can go from a feeling of contentment to a full blown pity part in seconds. All it takes is for me to see a picture of people enjoying a vacation or a couple walking down the street and all of the sudden the stark reality of my life with Marty hits my pity button and sends me into full bore whine. Why us?

It can be pretty easy to live awash in self pity. I could throw a pity party for us most any day of the week and some days, at times, I have to check myself and make sure I’m not wallowing in our tragedy. Some days, at times, I have to “hitch’em up” and simply get over it to make sure the stark reality of our life doesn’t overwhelm our life as we live it today.

Self-pity, feeling sorry for yourself, is one of those deadly sins of care giving. It robs you of who you are, it casts you into the role of a victim and you can’t really care for anyone if you are a victim. Self pity gives power to the circumstances and saps you of your ability to live through those circumstances and enjoy the life you have before you. Self pity drives you to focus on what has been, not the promise of what will be.

It’s easy for me to fall into the trap of complaining about how hard life is for Marty and me, how unfair the strokes are to both of us. After all, why should this have hit Marty, why should anyone, especially me, a good hard working Christian, white, American have to deal with all of this? We worked hard, we saved, we gave money to our church and other charities, we volunteered, why us? Living in a shroud of “why me” can just absolutely suck the very life out of you, it very simply magnifies any unfairness, any tragedy, any calamity that is a part and parcel of any life.

It is my personal struggle. I see people living their lives, enjoying the things Marty and I so wanted to do and I get envious. I see the couple in the grocery store and it reminds me of how much is lost. I see my friends picking up and going places and I feel restricted, imprisoned by my wife’s tragedy. I can’t work, I can’t travel, I can’t go anywhere without the concerns for dear Marty creeping into and controlling my thinking. It’s just sad bordering on pathetic, don’t you think?

There are times I could live in that sadness, that ego-maniacal self-pity, but it is such a clear and blatant waste of time and waste of the hours of our lives. Self pity inculcates itself into every aspect of your life and very simply gains control of it, self pity lets the tragedy of our life, the strokes, define who we are and what we do. I can embrace the sadness of what has happened to Marty but I must never let that sadness, that grief morph into feeling sorry for myself.

I see Marty, I talk to Marty, and she has never uttered “poor me” words. I’ve asked, I’ve pushed her and not one time has she succumbed to the sin of feeling sorry for herself, I’ve never heard her once wander into that swamp. There have a been occasions where she has said, “I’m pathetic”, but even then it’s not about pity, it’s not about feeling sorry for herself, it’s about the loss of her ability to control her circumstances, a recognition that she is limited in what she can do for herself. It’s not a fine line, it’s embracing the difficulty, it’s facing the facts, it’s dealing with reality.

That’s the difference, that’s the line a caregiver can’t cross. There is a big difference in recognizing reality, feeling grief and sadness and living with self-pity. Reality, grief and sadness help clarify; they help you to move to a healthier place where care giving is possible. Pity, well, it just helps you stay wondering what calamity, what “woe is me” moment is about to happen and if you are always waiting for another hammer to fall it makes it really hard to enjoy the life you have, at least that’s what Marty teaches me.

Wednesday, June 22, 2011

Hope for Lily

You got to sing like you don’t need the money, Love like you’ll never get hurt

You gotta dance like nobody’s watching; it’s got to come from the heart if you want it to work.

Kathy Matea – Come from the Heart

There is a new soul on this earth. She is born of my baby girl, a miracle of life, a testament to life always moving ever forward, a statement from God that we are still in favor.

I have hopes for this child as I have hopes for our other grandchild, Noah, as I have hopes and dreams for the grand-daughter to be who will be born in October. Hopes are what we bequeath to our children, to the next generation, hopes are what we provide to the next in line, hopes and dreams are our gifts to those we love that live their lives as ours have reached their zenith.

I hope and dream this child is able to recognize the miracle that is her life, the miracle that is life, that she is and always will be a child of something greater than herself, that she is a child of God.

I hope she lives and feels life with the passion of her grandmother and, like Marty, I hope she is able to see and feel the intensity of the colors of her world. I hope she possesses the same courage and sheer persistence of her grandmother and the knowledge that life requires us to constantly move forward.

I hope she finds a passion for her life and is able to live that passion.

I hope she learns to cry for the right reasons and at the right times, but mostly I hope she never has to cry too much. I hope she smiles a little every day of her life and that she laughs every time she can.

I hope she laughs out loud and embraces the sheer enjoyment of a moment as much as her daddy Lyle.

I hope she has the same empathy and tolerance for others as her mother, Erin. I hope she can cry and laugh with friends and family and wrap her arms around them with the same compassion and intensity as her mom.

I hope she has the love of family and the loyalty of her Grandma Eileen and the happiness and frivolity of Grandpa Larry.

I wish her the health and verve of her great-grands and I hope she gets to know how special their love for her is.

I hope she grows to know and understand that all of the women in her life, her mother, her grandmothers, her aunts and her greats-- are all remarkable, brave and strong, and that’s a really good thing and that she can be and do anything she can conceive.

I hope she finds someone to love and someone who loves her intensely. I hope she lives long enough to enjoy the singular joy in loving others and being loved by many.

I hope she has a wonderful, long, healthy life filled with hopes and dreams and that some of those hopes and dreams come true. I hope I get to dance at her wedding and hold her children and hope and dream for them as they are born.

Mostly I hope she finds a way to enjoy her life completely and that she gets to “dance like nobody’s watching” her whole life.

Tuesday, June 21, 2011

Having a Baby -- Semi-Live Blog

I'm about to head to Dallas sans Marty to sit out in the waiting room and wait for grandbaby number 2.  We don't know if this is Luke or Lily, but we know it's coming.

My baby girl went to Presbyterian Hospital (I love that it's a Presbyterian name) last night.  Erin is having consistent contractions, the baby has headed to the out door and everything is on go. 

I'm on go too, with promises to Grandma Marty to keep her informed and with help from Nikkie and Erica to keep me from worrying about Grandma Marty so I can focus on worrying about daughter Erin and baby Luke/Lily.  I'll keep you posted.  It's really pretty cool.

1:20 p.m.
In the room with Erin, Lyle, Larry and Eileen -- it's a party.  Mother to be is doing well, she has lots of wires connecting her to lots of things that provides lots of information.  She is progressing, slowly. 

Just so you know we will not be talking about dilation, fluids, or effacement.  I have a hard time writing about my baby's cervix -- so just quit thinking about it.

It's a nice room, big, with lots of really cool bells and whistles.  It's a long way from when our first was born and they wouldn't even let me in the delivery room.  Now they deliver in the room and even have a baby toaster ready and warming.

I suspect it will take a while for all of this to really climax, so to speak.  Luke/Lilly will greet the world at the right time, we are waiting.

3:20 pm
Still here, still in labor.  The contractions are working and they are a bit more intense and more frequent.  Epidurals have really made this whole process much more civilized.

This is one of those times when I really miss Marty.  She would have been right in the middle of the whole thing, knowing the right things to do, the right things to say and the right ways to offer comfort.  I'm a substitute, but a pretty poor one, I keep telling her everything will be all right, that there are babies everywhere that have been born, yadda, yadda, yadda.

Erin is doing great but I suspect she misses her mom too.  Eileen is here and she helps.  Having that maternal caressing is really important and wonderful for to see for the grandpa to be.  We miss Marty.

Lyle is doing wonderfully.  He's rubbing, caressing, getting out of the way, being present. 

We are waiting for the doctor to return and check the nether regions again and the nurse, who is Austrailian,  is checking her contractions even as we speak.  They will then decide if they need to increase the pitocin, crank it up so to speak.  More later.

5:46 pm

They just ran us out of the room, finally.  Frankly it was a tad nipply cold in there.  The baby has decided to start seeking the doorway to the world.  Luke/Lily now has a clear path and has dropped into the right position and they are ready for Erin to start pushing the puppy out the door.

She had done remarkably well.  We had left for just a bit before the doctor came to check her and when we returned she was in really good cheer for someone who has been in labor since early this morning.  She is doing well, a bit anxious about what lies ahead, but that is the way it's supposed to be, it's anxiety about the new child she and Lyle will have and it's an anxiety all parents feel for the rest of their lives.  Welcome to the club.

We are now in the waiting room, a place not completely unfamiliar for me, but at least we are waiting for good news, good things, instead of waiting for news about surgery. 

It reminds me a lot of when Matt was born, 30+ years ago.  Thirty plus years ago in Paris they wouldn't let me in the delivery room.  I stayed for the labor, coached my little heart out and then was sent to the sidelines to pace.  Time is excessively slow in any hospital waiting room.

We shall see if it's a Luke or a Lily soon.

7:10 p.m.
Lily Jewell, born at 6:15 p.m. weighed in at a hefty, but really cute 8 lbs. 11 oz..  Tonight she has blue eyes and ten fingers and ten toes and is perfect.  She is laying on her new mother's chest even as I write, gurgling and squirming away and starting to nurse.

My baby girl and her hubbie did a great job.  It didn't take too long once the little critter found her way to the out door.  It's pretty amazing.

I don't think there is anything like it in the whole world, seeing a new born, a new baby, a new soul for this world.  She is a blank slate and in my mind can do anything she wants to do with the rest of her life and the rest of her life is all ahead of her, how cool is that?

What can I say -- it's my new grandbaby and I like it fine, pretty perfect.

Sunday, June 12, 2011

Dealing with the Guilt

Guilt. Husband guilt, father guilt, survivor’s guilt, caregiver guilt, it’s pervasive, if not ruling. It’s always there. Guilt too often drives behavior, thoughts, and feelings, its real, its palpable; it’s a part my being with Marty. It’s a part of who I am that I must confront and it can be a part of what I do to others from time to time. After all what are parents if not purveyors of a little bit of guilt.

I know her strokes were not my fault, I know the trauma was beyond my control. It’s incredibly narcissistic and grandiose to think I could have prevented Marty’s strokes, to think if I had somehow made her quit smoking, if I had been more present, been a better husband she somehow would not have gotten sick. It makes no sense to any rational sentient person that I somehow feel guilty about her strokes, but sometimes I do feel that guilt, that ugly emotion, which clearly brings into question my rationalness and sentience.

The first couple of years after Marty had the strokes I felt guilt for almost everything. That little nagging inner voice kept haranguing me with I wasn’t doing a good enough job in caring for her to avert the second stroke, I wasn’t aware enough of illness signs or hygiene processes to catch or prevent the latest life threatening infection, or I wasn’t being attentive enough.

It’s weird to feel guilty for smiling or feeling joy but I did. It’s just plain crazy to feel psychic pain for enjoying a round of golf or a trip to see your children, but for a while every time I smiled; every time I enjoyed myself I felt it tinged with this sense of remorse and guilt. How could I feel anything but grief, sadness and remorse when Marty was lying in bed, broken by strokes?

It happens most often when I am somewhere or doing something I know Marty would have enjoyed. It hits the hardest when I am living our life with our children without her. The day our grandson was born I went to Dallas, alone, promising her I would take her the next day. It was a hurried trip, a quick turnaround trip that required going quickly and on the spur of the moment. I beat myself up the entire way to the hospital, why didn’t I just load her up and go, why didn’t I take the time and the trouble and go the extra step to take her, instead of Marty I took guilt with me in the car.

I know Marty; I know she would never wish the burden of guilt on anyone, she felt it too often in her own life with her own mother. She can’t make it go away, it’s in me and too often I can’t get completely away from feeling that pang. It’s a futile and useless emotion in our life’s situation.

Guilt became something I could use to make me feel as damaged and hurt as Marty. In a strange way I used guilt to punish myself, I used guilt to make me at least as frail and needy as Marty. Guilt, feeling bad about feeling happy was a tool to make the caregiver, me, sick too.

In time, over time, guilt for all things bad in her life and the burden Marty and I put on our families and friend’s lives abated. Understanding I was using guilt as a crutch helped; recognizing I’m not responsible for all bad things helps, knowing I’m not everything to everyone helps, living the life helps, time helps.

It’s still there from time to time, every now and then. It still creeps into my psyche on occasion when I have missed something, when I forget to make an appointment, when we miss a medicine dose, when I let my guard down for just a minute, guilt for all perceived sins past and present breaks past my guard. Eventually you just have to learn that life happens and we simply can’t take responsibility for everything, we can only do our best. It’s all we can do.

Thursday, June 2, 2011

Just Because You Can't See It....

We were living in Muenster in the early 80’s when she threw a full glass of Diet Coke at my head. I can’t remember what we had argued about but I’m sure it was some earth shaking thing like leaving the toilet seat up. Marty could get really angry, really fast, she also laughed out loud easier than anyone I have ever met.

Marty’s passion about almost everything was visible, up front and out loud. All of this is to say I could never get by with telling Marty I didn’t know how she felt about something. If she was angry, I knew it, if she was happy I knew it, if she was sad I knew it. How she felt, what she was feeling was always pretty apparent, except when she was scarred or when she felt insecure, then her false bravado would kick in, she would not accept people seeing fear.

Then she had two strokes, two assaults on her brain that altered her personality. Today, in our new normal, it can be hard to figure out what she is really feeling. There are the logical responses to logical events, events that clearly cause nervousness or anxiety to rise but generally her affect is pretty flat, except when she finds something really, really funny or really, really moving in which case she laughs, at both, it’s just what happens.

At the lake we have a large pontoon boat in our boat house. The boat is on an electric lift and I can get the boat level with the dock and move Marty on the boat for an afternoon or evening cruise. She has a really good life vest and generally enjoys being out on the water with her kids and others, though at times I think it scares her just a little.

The other day we had finished one of our evening cruises and we pulled into the dock and I started lifting the boat with the electric lift, out of the water and up to dock level, it’s about four feet now that the lake is down a bit. I got the boat just barely out of the water when the boat quit rising, the lift quit lifting and we were stalled about four feet below where I could roll Marty off the boat in her wheelchair. It was a conundrum.

It was hot, the boat was not completely out of the water and was moving back and forth and there sat Marty in her wheelchair, in her life jacket with her blue sun hat and sunglasses on, just a little askew, stranded on the boat. No one really panicked but I was racking my brain for a solution.

I’m a big burly guy but there is no way I could lift her that far on my own. It just so happened number one son Matt, a bigger and burlier guy than I am was at the lake with us. We called him down and I explained what we needed to do to get Marty to dock level. We needed to get on each side of Marty, under each arm, under each leg and lift, first to a chair, then to the dock, then to standing, then to her wheel chair.

Piece of cake, right?

I knew we could do this and tried to represent a level of confidence to Matt, Marty and Nickie our caregiver. I don’t know that anyone was buying the bravado but everyone agreed to try it. I moved Marty to a bench in the boat and Matt handed Nickie the wheelchair. He then got on Marty’s right, I got on her left with one arm under her arm pit and one arm under her left leg and Matt did the same on the right side.

I looked at Marty and said, “Okay?” She nodded one of those what else can I be but okay kind of nods and I counted to three and Matt and I lifted to the first level, the boat rocked and we went back down, gently. The next attempt we agreed to go all of the way to dock level and with another one, two, three up Marty went until she was sitting kind of snickering on the dock. I don’t think she was amused.

Matt and I both clambered up to the dock, grabbed arms and legs again, stood Marty up and Nickie slid the wheelchair under her, crisis averted, no broken bones, no dislocated joints, just another tale to tell.

Later that evening as we were retelling the story to each other one more time I asked Marty if she was okay, to which she said she was fine, a pretty basic, ordinary response for her. I asked her if she was afraid while we were lifting her and she nodded and said, “yes, I was, I was afraid you would drop me.”

I said, “I will never, ever drop you, not now, not later, but I understand why that was scary. You didn’t act like you were scared.”

“Well, you might not see it on the outside but I was really pretty scared on the inside and you can’t see that and just because you can’t see it doesn’t mean it isn’t there.”

Another lesson learned, remembered from our life together. All that stuff, all that joy, happiness, anger, sadness and love are still there, it’s all still a part of her, barely manifested at any given time. All that stuff, all of the emotions that drove Marty to throw that Diet Coke at me so many years ago, is still there, deep inside. It’s like she said, just because you can’t see it doesn’t mean it isn’t there.