Thursday, September 29, 2011

Names, Names and More Names

Names.  Marty Jean, daughter of Ethel Jean and Arty Jewell, you can see where they found her name.  Larry Carlisle, son of Bettye Lou and Larry Carlisle Sr., I am a junior; it’s part of my heritage.  My nickname, Ginger, is a part of our family lore.  Our names don’t define us, but they are gifts, of a sort, for our past.

The names we carry are signs of where we came from, where we started.  Marty never particularly liked the name Jean, her mother went by Jean because she didn’t like the name Ethel and I was married to Marty for 20 years before I knew Arty’s middle name was Jewell, he truly wasn’t a Jewell kind of guy.

Marty and I worked hard to provide our children names they would be proud of and wouldn’t scar them in some way.  It’s my memory that I named our children, I’m betting Marty remembers differently, but since I’m the scribe, I named our children and named them well.

Matthew McCauley is a great, strong name which has fallen to the derivative Matt, but it really fits my son, he is Matt.  The McCauley is a family name, people who raised Marty’s maternal grandfather and at the time we wanted to honor Marty’s family but Arty and Jewell just didn’t seem to work in 1979.

Our daughter’s name is Erin Elaine mostly because I liked the name Erin, it’s a Celtic name and we aren’t Celts, but I liked the name anyway.  Elaine came about because it was my sister’s middle name….sorry Martha, not really, it just seemed to fit with Erin and Erin Elaine rolled trippingly off the tongue.   

I tried to exert what patriarchal influence I thought I might have when grandchildren started to appear.  I strongly lobbied for a good strong Texas name that would reflect the powerful lineage of both families, a Larry on our side and a Robert on the mother’s side led to the logical name, Larry Bob.  Larry Bob died a long death, and morphed into Noah Robert which is probably a better reflection of the budding train engineer that is Noah, but I’m going to call him Noah Bob and I don’t care what they say.

When daughter Erin came to be with child they decided they didn’t want to know the sex prior to birth, it was to be a surprise, much like the whole being with child thing.  Because husband Lyle’s family has an L thing going with names and because Erin had put dibs on Luke for a child’s name since she was 12 the boys name was to be Luke something or other, we didn’t get to the something or other because we got a Lily, a perfect little baby girl.  In fact, we got a Lily Jewell and got to use Marty’s father’s name in a very appropriate fashion and I get to sing “Hi Lily, Hi Lily, Hi Lo” endlessly when I hold Lily Jewell.  

Now we have a new one on the way, a new baby girl.  My son and his wife are keeping names close to their respective vests.  Sarah, Noah Bob’s mother, keeps saying she just doesn’t feel any of the names proffered.  I keep reminding her of the plethora of strong family names we have, Ethel, Beatrice, Lula, a Bettye Lou, Ebba Bird or Grace, all kinds of really cool names.  I’ve offered Sally Jo but that was a no go.  I suspect they will know her and her name when she comes next month.

The semi-remarkable thing about all of these names is that Marty knows them, remembers them, recites them.  All along she has been remarkably good at remembering names and faces of people she knew before the strokes, but she struggles with names of people she has since come to know. 
 Marty trusts our three amazing caregivers, Nikkie, Renae and Erica, completely.  She spends hour upon hour with them, listening, talking and getting to know them.  She knows who they are, she knows what they do for her, she struggles with their names.  If you say their name, recognition, if you ask what their names are, the recognition is there, but the names are not close to the tongue, her brain knows who they are; getting it to the mouth doesn’t work.

Her grandchildren however, she knows and remembers their names.  She can’t get down and play with them on the floor, she can’t really interact to the degree she would like, but she is absolutely enchanted with both Noah Bob and Lily Jewell.  She knows she is attached, she knows they are hers; she knows they are a part of her life.  Marty knows their history and their names are in forever in her brain and on her tongue because they are a part of her.   

I like my name; I like the fact that it ties me to my family and is a part of my past.  I really like the fact that Marty remembers her grand kid's names, I really like the fact that she is still here to see and appreciate her children passing on names and passing on her family's past.  Mostly, as always I really like the fact that she is still here, with me.

Monday, September 26, 2011

Our Longest Argument

I have written before about the longest and as yet unresolved argument between Marty and me, who’s smarter.  It’s a 35 year plus disagreement where we are both completely entrenched in our positions.  We both really believe one of us is smarter we simply can’t agree on who that is.

Yesterday we sat in the living room doing some exercises with plans to go on a regular Sunday afternoon drive, kind of like old people in the 50’s but with $3.50 per gallon gasoline. 
We are thinking about replacing our car before maintenance costs add up to more than its worth so I have been looking at various transportation alternatives which suit our very specific needs.  I’m trying to figure a way to avoid a mini-van.  I think mini-vans are very cool, we used to have one, but my coolness quotient would take a massive hit if I had to drive one every day, it could destroy the last vestiges of my manhood.

I had mentioned to Marty earlier in the day that I would like to drive her by the cars I was looking at to get her opinion.  Regardless of her impairments I still need and want her agreement and approval to spend this kind of money.  It’s important to me and to her that she be involved.

I asked her, “Do you remember what we are going to do on our drive?”

She said, “Yes, you’re going to show me a couple of cars?”

Being the wise-ass that I am I reply, “See you’re not so dumb are you, you remember stuff.”

Marty, “I’m not dumb, just a little brain damaged.”

Me, “Absolutely right you’re not dumb.”

I bent down to wheel chair eye level and kind of whispered in her ear, “Do you still think you’re always the smartest person in the room.”  Marty was not always the most secure person you would ever meet but she was always secure in her intellect.

Marty looked me square in the eyes and said, “Sure do, in fact I know I’m the smartest person in this room.”

Just for good measure, she smiles and with those blue eyes twinkling she said, “Look around the room, I am the smartest person in this room,”

I had to laugh, she got me again.  In my youth someone surely would have hollered, “She really rocked on you.”  She did rock on me pretty good.

I’m really not ready to concede on this 35 year old fight of who’s smarter, but there are days, even today, even with the brain damage, I know one of us is clearly smarter.

Thursday, September 22, 2011

The Inevitable Conflict of Want and Can

More often than not Marty was at the center, she was in the middle directing people, places and things.  She was loud, brash, funny, incredibly smart and did I say loud?  I shussed her once at some hoity toity museum in London and man did I pay for that little faux pas, big duh on my part. 

Marty thrived on being at the center, she liked being involved, being in the middle of the discussion or project, it was just her intellectual and instinctive nature.  She’s the one who would be in the kitchen giving advice on the stew or in the garage trying to miter cut crown molding, or at least telling you a better way to do it.

In her new life Marty really doesn’t want to be noticed.  She is very self-conscious about her condition, her appearance and her capabilities.  When she is honest with me she tells me she is afraid people are judging her, making value judgments about who she is and what has happened to her.  She wants to be as far away from the center of attention as possible.

Even with a family who knew who she was and understands who she is today; she is not entirely comfortable.  Everyone dotes on her, everyone loves her, everyone is truly amazed at her spirit, but she is still incredibly self conscious.  More often than not when faced with the chaos of a crowd she gets quieter, more internal and withdraws and would just as soon be having a one-on-one conversation with my mother away from the crowd.  

I can understand it.  The unfocused stimulus around her just floods her senses.  I know her instincts tell her to be right in the middle of things but her brain just won’t let her, it won’t fire fast enough with enough information and it won’t allow her to get up and walk and be right in the center of the action, so she gets self conscious.  Her instinct to be involved is short circuited by the limited capacity of her fractured brain; and her natural inclination to be the eye of the family hurricane can’t really be sated. It must be incredibly frustrating.   It’s a classic clash of want and can.

The single biggest loss for Marty has been her ability to think and to think quickly and to absorb information from multiple fronts.  She is aware enough of her life and her limitations to know what is working and what isn’t working.  She hates the struggle to say what she really wants to say and do what she really wants to do.

She listens, she watches, but she doesn’t really participate as she once did and my whole family misses that.  I worry I put her in situations that does nothing more than make her feel worse, that just intensifies her sense of loss.   It makes me wonder if I am doing her a service by putting her in the middle of the family and friend chaos at birthdays, celebrations and holidays.

After our recent trip to Dallas to fete our son on his birthday I asked her if she liked going up and doing that and she said, not really.  I told her I was sorry that I knew it was hard for her to go.  She said, as she often does, so very simply, “You didn’t make me go, I wanted to go.”  

It is what she wants to do, she wants to be a part and parcel of all of this, she wants to celebrate her family and her friends, she will always choose to go and do, she just might not like it because it is so hard for her to just “be” in those situations.

Years ago my Mom and Dad went to China and stayed for about a month.  Right after they got back I asked my mother if she enjoyed the trip and she said, “I will in about a month.”  In other words, you do things that are out of you comfort zone, you participate in life that at the time may seem difficult but in the end are wonderful experiences.

That’s how it is with Marty, she wants to go, she often doesn’t like the doing, but she really likes the fact that she did.  She is too often out of her comfort zone, her very life today is out of her comfort zone, but in the end, as we look back, being out our son’s birthday celebration is not only the right thing to do but an experience that builds both of our lives.

Saturday, September 17, 2011

Brain Dump

I am a stream of consciousness kind of guy, full of random thoughts that spill out in no particular order.  Marty was pretty much the same way, though a much more focused thinker.  As I have not been able to write a coherent sentence for a few days I thought I would simply write down a few of these incredibly insightful and intelligent thoughts:
  • ·         We went to see Marty’s neurologist this week and I updated him on Marty’s recent health.  I hadn’t realized it but she hasn’t taken an antibiotic since the middle of May.  I do count, that’s four months, that’s fantastic.
  • ·         My son who is a loyal young man and a faithful reader is convinced I never had sexual relations with his mother.  He just couldn’t get past the first two paragraphs of my last post.  Sorry big guy, I was there at your conception, your sister too.
  • ·         I’ve been thinking about my fears lately.  My fears range from messing up something that hurts Marty to dentists to snakes.  A new fear – President Rick Perry.  He makes George Bush look measured, reasoned and intelligent.  You have to wonder why we have to replay the Scopes Monkey trial all over again.
  • ·         In the last five years I have had two minor bouts of cellulitis, a virginal introduction to poison ivy, two stomach viruses and one minor episode of food poisoning.  Now I have the shingles.  I have learned two things from all of this, the shingles really, really hurt, I am allergic to poison ivy and I clearly need to wash my hands more. 
  • ·         I have had some of the kindest and most understanding notes and comments about my blog post on sex.  It is so meaningful for people to say, in so many ways, they understand the loss of this most basic part of our life.  It really is touching.
  • ·         We celebrated my father and mother’s 83rd birthdays in August and September.  We celebrated Marty’s birthday in August and we are going to Dallas to celebrate my son’s birthday to be followed by my grandson’s birthday, the birth of our third grandchild (the baby to be named later) and my daughter’s birthday in November.  Clearly my family tends to procreate in the winter months.
  • ·         Unless he commits some heinous crime I will still vote for Barack Obama.  Given the circumstances (a $1.5 trillion deficit he inherited, the economy contracting by 5% and shedding 200k jobs per month) I think he has done more right than wrong.  Though I tell you, if the rumors that he really is a Muslim, Buddhist, Wiccan, Marxist trying to establish a USA caliphate and he has used his secret Muslim scientists to cause the drought in Texas then he can count me out.
  • ·         I wish a very quick recovery to my children’s other Mom, Sue.  Surgery sucks, two surgeries double suck, three times in the hospital, well it’s just a major drag.  So sorry for you and aren’t you proud of your children and your husband.
  • ·         I worry that my Texas Tech Red Raiders are going to be a team without a country when the Big 12 implodes.  All of this blowing off of tradition kind of makes me sad and that makes me feel like an old fogey.
  • ·         I skim the obituaries for people I might know.  Does that make me old?  When I read them and talk about them to my friends and then talk about having the shingles that makes me old.  Having a 32 year old son, a 29 year old daughter, a 2 year old grandson doesn’t make me old, it makes me happy.
  • ·         I sometimes worry I don’t try enough new things for and with Marty.  I’m not sure I am doing enough to really keep her stimulated.  It takes a lot of energy for both of us to do things and go places and step out of our routine.  I hope when I look back on these days I see that I kept the right balance for her and for me. 
  • ·         Flu shots get your flu shots, it’s easy and they don’t hurt, much.  HPV, get your HPV vaccine if you are young enough and your parents will let you, preventing cancer is a good thing.  I like it when I can find a reason to agree with my Governor.
  • ·         Last, from the what I learn from Marty file, cut people some slack.  No matter what I do to Marty, no matter how many times I bang her foot into the wall when I’m pushing her wheelchair, or how many times I simply hold her wrong, her action is always very simple.  She forgives and completely moves past the bump, every day she cuts me slack.  It makes me want to do better.
I told you they come out in fits and spurts, it’s just random.  That’s why sometimes I have to let the ideas flow and spill out or my brain just gets too crowded.  My brain feels better now.

Thursday, September 1, 2011


I am a fortunate man, I know that.  I still have Marty, I can still reach down, hold her, hug her, feel her breath, listen to her beating heart when I lay my head on her chest.  That she is still with me is a blessing.  I miss intimacy; I miss a passionate kiss, a gentle caress of the cheek, a hand on the middle of the back moving slowly up and down.  Let’s face it, I’ll tell the truth as best I can, I miss sex.

I miss the tactile, sensual, carnal, visual, passionate, instinctive part of having sex (sorry kids you weren’t adopted).  More important I miss that sense of connection, the emotional and physical intimacy you find when making love to and with someone whose heart you hold dear.

I miss the closeness and the touching of the body that only happens when you are sharing that most intimate, that most personal of acts.  There is nothing in the world that connects two people like sex.  Those people in life who say sex is not an important part of their relationship are clearly having sex because when you’re not, you feel the importance of that very simple and complex act of loving.

For me, as I matured, I was able to see sex in a couple of different ways.  As a teenager and a young man the carnal, visceral aspect of the act of sex ruled my understanding of the process.  As I grew up and gained insight I was able to understand that sex was more than the instinctual carnal part of the psyche, it was a way we satisfied another instinctual part of our being, a singular intimate connection to another person.  This is a consequence of the strokes, this is what both Marty and I miss, as connected as we are, as much as we have grown together, we both miss the power of sexual contact.

There is nothing in life that replaces it, that captures the intensity of human connection.  Sex, the physical act of loving, our outward sign of giving and taking love cannot be replaced in a caring, loving relationship.  It’s the ultimate connection, and it is a force of nature, it is beyond the drive to simply procreate.  

Marty and I are able to laugh at ourselves and our forced celibacy but it is a part of our life I really miss, Marty, not so much, it’s not really on her top ten things she misses.  It doesn’t come close to missing walking, thinking, talking, all of that stuff. 
Celibacy, at 57, is not something I have chosen, it’s not a part of my life I would want to adopt, but it seems it is a part of my life that is gone for now, I don’t think I want to say gone forever, I can’t deal with forever.

It’s a real conundrum.  I find myself at loggerheads between desire and reality, past and present, new and old normal.  I want something that appears to be in my past, that I am not ready to forget or forgo. 
I do realize I have options.  There’s infidelity, assuming I could find an appropriate and willing infidel, but there are way too many emotional, psychological and moral issues with infidelity.  An affair causes too many people too much pain and the associated guilt would be too much for me to handle. 
I thought about a trip to Las Vegas and finding a resident call girl, but that doesn’t really do much for the important part of a sexual relationship, the thing I most miss, intimacy and connection.  Besides, that carries with it a certain ick factor, not that there’s anything wrong with women making money anyway they can.

Neither of these options really addresses the seminal (pun intended) part of sex, the connection, that psychic, emotional raw connection that only real love making provides.  Sex brings a sense of attachment, an intimate knowledge and understanding of a couple’s emotions, passions, feelings and love.  It is the most outstanding outward display of an internal feeling.

All this sex stuff is decidedly uncomfortable for me and it is difficult to confess my angst about the loss of it.  It is one of those issues where real honesty comes hard because sex is such a personal part of our lives.  It’s not something I have ever talked about with friends, though I bet Marty did, I hope her friends think of me fondly.   

All of this is quite simply another part of a difficult journey; it is another aspect of being a caregiver to one you love.  As our journey has gone on it is my truth, my discovery about loss due to Marty’s strokes.   

I am a fortunate man, I know that.  I still have Marty, I can still reach down, hold her, hug her, feel her breath, listen to her beating heart when I lay my head on her chest.  That she is still with me is a blessing.  And that is the most important part of our life.