Strokes Suck -- Forever

It doesn’t happen very often, but occasionally I look around, I think of Marty’s brokenness, I focus on what was and what is now and I get angry, I get pissed, I feel completely imprisoned by my life and I scream in my mind, “What the hell am I doing and how did I get here?”

I’m not proud of these moments, these feelings, but I can’t, I won’t deny them, they are very real, serious feelings that at infrequent times define me.  The anger, the feelings of profound frustration  are not focused on anyone, not me, not Marty, it is all about the disease, it is all about the results of the disease, it is all about the loss, it is all about the missed moments of my life with my wife.

Marty and I are at a stage in our life where we should be able to enjoy and reap the fruits of our years of labor and saving.  We have the financial means to do things, to enjoy things, to see things, to dance on the deck of ship, to drink wine in a valley, to see the masters at the Louvre, to wade in the ocean with our children and grandchildren.  The disease makes all of those things, those dreams, stay just that, dreams of the past.

The losses often seem endless and the barriers to do the simplest things seem insurmountable.  Almost everything is exponentially harder to do; getting up and going to church, having dinner out at a favorite restaurant, or going to visit friends is often so hard as to deter doing any of it.  Doing anything quickly or spontaneously just doesn’t happen, what we do requires advance plotting and planning to care for Marty’s needs.  You can’t just go anywhere because of the wheelchair or Marty’s limited capabilities.  What we do, when we do it is always constricted by this damn disease.

Then there is the isolation, the feeling of being alone in a fortress.   As someone who is comfortable with solitude I never thought I would feel isolated, alone.  I hate the feeling of being alone and it’s an unfortunate but a real part of caring for someone with a long-term, debilitating disease.  It just happens, the disease, the recovery from the disease, the caring for the sick becomes the obsession, focus and the driver of your life and you use the disease to help build a wall around your life to create a fortress.  There’s not enough bandwidth to deal with the outside world and what lies ahead.

How about what’s ahead, what the future holds?  I try and stay away from the future, it’s always too overwhelming.   The reality is that sooner or later the repercussions of the strokes will overwhelm Marty’s systems and take her away from me, take away my obsession.   Being alone, aging alone is part of the future I avoid.  Its part of what the anger is about, it’s the worst part of these strokes, the only way to be truly free of this disease, the only way for me to erase the disability, the only way for me to live a different life is for the love of my life, my wife, to be done.  Then I get to be old and completely alone, so yes, it pisses me off.

Then, like the cherry on the sundae, I hit myself with a little guilt for recognizing and railing about the curses of our lives.  It’s not right to be angry at loss when you have so much good in your life, it’s ungrateful, it’s self-pity, it’s whiney, it’s ignoring blessings, it’s unbecoming, uncool, and pathetic.  One shouldn’t just focus on the loss, one should only focus on what is good, that’s what the strong and stable do, they persevere, they march through the rain, smiling. 

I swear I know how fortunate I am to have had the time to become reacquainted with Marty.  I swear I understand the blessings of our marriage and how Marty has made me a better man, a better human.  I swear I know we are lucky to be able to live and carry on and see our grandchildren born.  I know we are blessed to have such a wonderful supporting family and cast of characters around us.  I got that, I really do, I still get mad as hell at the disease and its cost on Marty and me.

I do that a lot, recognizing our blessings, but occasionally, when I look around and see the couple walking down the sidewalk, or when I see a man and woman walk effortlessly into a diner, or when I see a couple gliding across a dance floor I mourn what was and will never be again.  Then, because it’s what we all do, because it’s how humans do it, I move on and say thank you God for keeping her here with me.

Sex

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.

Loss is Not the Whole Story

A friend, a 20 year friend, sat with us in Marty’s room. A welcome, sporadic visitor, she sat on the hassock at the foot of Marty’s bed and told tales of friends and family and we laughed together. She is where we get wonderful information about the lives outside our sphere buzzing around us. She is a friend of old who knows Marty now but knew Marty then, the best kind of friend, one of those who have read the whole book.

This good friend had told me the other day when we met by chance in the grocery store of the suicide. It was a short conversation like many conversations when you are standing in the grocery aisle trying to avoid the careening carts of the old and young alike. It was a conversation that needed more time.

She came over to talk about many different things, not just the black news. Marty’s legacy dictated that I had to ask, ask how she was, how she was feeling. It’s exactly what Marty would have done with her good friend. Marty would have looked at her and said simply, “Tell me how all of this makes you feel.” Our friend said she was looking for a place to put this new event and she wasn’t sure she was there yet. She then talked briefly about the other suicide in her past, one that left scars from so many years ago.

She then said, “I really don’t like to talk about it to people who aren’t close; I don’t want this to be all people know about them.” She then talked about the two people and how accomplished, how smart, how capable both had been before, before the act, before the deaths tended to define them.

Our friend sat there and told us snippets of lives we could never know, she painted a picture of people who were bigger, broader and more nuanced than just suicide. In our brief conversation she created lives lived, not just lives lost. She conveyed what was real about these very real people, she kept the book of their life open just a bit and didn’t let their untimely on purpose deaths define them for her or for us; they were not just people who willfully decided to leave life, they were people who had a much larger story, a much longer book.

I don’t know and can’t imagine the complex emotions survivors of suicide must have. I do understand trying to keep memories alive, I do understand trying to clarify the present for those who did not know the past. I have spent the last five years trying to ensure Marty’s legacy, trying to help people know more of Marty than today. It’s why I prize, why Marty values all of the people who knew her before the strokes. They’ve read the whole book, they get the whole story.

The day of the first stroke part of Marty left forever, the day of the 2nd stroke so much more was lost, so much of what made her Marty was now gone forever, dead for her, for me. We are fortunate because her life, her doggedness, her perseverance continues. She made the very conscious decision in the midst of all of this loss to “not go gently into that good night.” She made the decision to stay and live with the losses.

Like our friend who doesn’t want the past to be forgotten by the suicides, I do not want Marty to be just the strokes or what has remained from the strokes. We cherish the people who remember Marty’s humor, her intelligence, her bawdiness. It is my job to make sure those people don’t forget who she was and to educate the people who didn’t know her, to help them know who she was, and remind all that she is more than the strokes, she is more than just the most recent pages of the book, she is, was the whole book.

Our friend knows this of Marty and the people she loved and lost. If you really want to know people, you have to read and remember the whole story.