Marty and I have a heritage rooted in Christianity. We continue our Christian confession in spite of or more rightly because of our liberal proclivities. Our faith is our foundation; it is our past and our present. Marty and I were both raised in a Christian church, stayed in a Christian church and raised our children in a Christian church, it is part of who we are, part of how we think, hopefully, it drives how we act toward others.
Marty was raised in the Baptist tradition, a bit more conservative than my Presbyterian foundations, but largely the same. The only real difference, as I see it, is the emphasis on God’s grace and church polity. Baptists focus on humanity’s actions; Presbyterians focus more on God’s actions for humanity, a small but telling difference for Marty and me.
My faith in God and what that means has been tested over the years, certainly no more than the past five years when Marty’s strokes changed our lives. The idea that God never gives you more than you can handle has been sorely tested in my eyes. While it may not have been more than I could handle it’s certainly right to the very edge of my emotional and intellectual capabilities. I have been alternately grateful, angry, thrilled, depressed, faithful and faithless through all of this. To say these past years has been a test of my foundation is a complete understatement.
Amazingly, Marty’s faith, her basic belief system, her foundation has never been shaken and never been stronger. When we talk about religion, our faith and belief in a higher power, she has never wavered, she has never expressed anger or disappointment in her God for what has happened. She has only said I believe God carries me and cares for me. I think if anything her faith in this higher power, her belief in God’s action for humanity is stronger than ever.
Personally, I have a hard time finding God sometimes. I get angry and I lose my faith on a regular basis. Not Marty, I don’t understand why she doesn’t feel anger, why she doesn’t whine about the unfairness of her situation, why she doesn’t moan about God taking her most precious gifts from her. She simply doesn’t, she simply, very simply believes, very simply holds faith, very simply knows God holds her in God’s hands.
Marty‘s evolved view of Christianity is simply, “God is with me.” She has managed to avoid the trap of humanizing her God by blaming God for her strokes; she understands her illness is not of God, by God or for God, it is human illness caused simply and completely by the frailty of humans.
She knows intuitively not to ascribe human characteristics to God, she believes God is infinite and she knows we have but finite understandings causing us to cast our fears, our anger, and our own prejudices as God’s. Marty knows we can’t excuse our frailties by making God frail.
Her God is not one of hate or retribution, her God, my God; the God of our Christianity is one of benevolence and grace. Marty doesn’t blame God or hate God for allowing the illness she is just grateful for her continued life and the chance to continue her life. She believes God is with her.
There are days I want to blame God, to rail about the inherent unfairness of Marty’s loss. On too many days I have found more hard questions, more friction in my beliefs and faith. My doubting times are much more frequent and much stronger than ever. I wonder, I doubt, I lack the clarity of my faith. I’m not Marty, I don’t have her strength, I don’t have her faith.
Marty, like Job has accepted her life and her fate and said I will live as I am, I will live with my faith in a God that is with me and loves me. She knows that better today than ever. I am constantly amazed at what I learn from Marty.
Monday, February 28, 2011
Tuesday, February 22, 2011
Touching, Feeling and Pulling My Chain
I am a touchy-feely kind of guy. I like to hug and be hugged, I like to touch and be touched. It’s not necessarily a prurient kind of touching, though I’m not opposed to that at all, I mostly crave human contact, that tactile, warm, gentle touching and hugging that people bring to each other, that gentle grasping and physical recognition that makes us all human.
I think physical contact has always been important to me; after all I did play doctor from a very early age, if you know what I mean.
After Marty’s strokes confined her to the wheelchair helping her stand or move from chair to chair precipitated physical contact. To facilitate upward movement from the wheelchair she would take her right arm and wrap it around my neck and hold me tight as I would grab her under her arms and lift. Sometimes we would stand there for three or four minutes with both of my arms around her, with her holding tight around my shoulders, hugging, holding, warming each other through our tenuous hold on each other.
When she broke her right arm most of that hugging and holding stopped, she simply cannot raise her right arm high enough to hold on to me and my girth doesn’t offer the same purchase for her as my shoulders. We still stand as I hold her, as I grip her tight and hold her close to me, but it’s not the same.
Most nights we sit in the living room and watch scintillating television like Survivor, American Idol and The Big Bang Theory (absolutely hilarious). Marty sits in her lift chair, I sit in my own recliner and we trade coughs and pithy remarks about the entertainment fare.
The other night as I got up to turn the night over to the bathing process I stopped in front of Marty in her chair. She was sitting with her feet up, quite comfortable. I stepped over and straddled her legs that were propped up on the bottom of the recliner, no easy feat for a man with short legs. I leaned over pressing up against her and slipped my right arm around her back and kissed her on the neck. With my left arm I took her right arm and put it around me and whispered to her to hold me. She moved her arm around me and said, quietly, in a breathy whisper, “Don’t breathe on me, you stink.”
“Do what?” I said, pulling my head away and looking into her soft blue eyes.
“You stink,” she said. “You smell like egg salad.”
“No I don’t,” I protested. “I haven’t even been around egg salad.”
By now she was laughing so hard she started to choke and cough and my quiet romantic moment was pretty well DOA. Marty has always thought she was the funniest person she knew. Egg salad indeed, Marty’s version was the only egg salad I ever liked so it hasn’t pass my lips in five years.
At night, after Marty’s bath, our caregiver takes her to bed and starts doing all of the things she needs to do to prepare for the night’s rest. I always go in and check on her as part of the nightly ritual. I went in and listened to her chest and checked her vitals, still paying doctor as it were. As always I bent down, kissed her on the forehead and told her I would come back in before I went to bed.
“I love you,” I said as I was kissing her forehead and then her cheek.
“I love you too,” she whispered, “but brush your teeth before you come back in, please.” She giggled a little bit like a young girl and then smiled.
Marty was always at her best when she was in charge, when she was pulling my chain. I like our lives best when she still tugs hard; for me it really is just like a hug from her.
I think physical contact has always been important to me; after all I did play doctor from a very early age, if you know what I mean.
After Marty’s strokes confined her to the wheelchair helping her stand or move from chair to chair precipitated physical contact. To facilitate upward movement from the wheelchair she would take her right arm and wrap it around my neck and hold me tight as I would grab her under her arms and lift. Sometimes we would stand there for three or four minutes with both of my arms around her, with her holding tight around my shoulders, hugging, holding, warming each other through our tenuous hold on each other.
When she broke her right arm most of that hugging and holding stopped, she simply cannot raise her right arm high enough to hold on to me and my girth doesn’t offer the same purchase for her as my shoulders. We still stand as I hold her, as I grip her tight and hold her close to me, but it’s not the same.
Most nights we sit in the living room and watch scintillating television like Survivor, American Idol and The Big Bang Theory (absolutely hilarious). Marty sits in her lift chair, I sit in my own recliner and we trade coughs and pithy remarks about the entertainment fare.
The other night as I got up to turn the night over to the bathing process I stopped in front of Marty in her chair. She was sitting with her feet up, quite comfortable. I stepped over and straddled her legs that were propped up on the bottom of the recliner, no easy feat for a man with short legs. I leaned over pressing up against her and slipped my right arm around her back and kissed her on the neck. With my left arm I took her right arm and put it around me and whispered to her to hold me. She moved her arm around me and said, quietly, in a breathy whisper, “Don’t breathe on me, you stink.”
“Do what?” I said, pulling my head away and looking into her soft blue eyes.
“You stink,” she said. “You smell like egg salad.”
“No I don’t,” I protested. “I haven’t even been around egg salad.”
By now she was laughing so hard she started to choke and cough and my quiet romantic moment was pretty well DOA. Marty has always thought she was the funniest person she knew. Egg salad indeed, Marty’s version was the only egg salad I ever liked so it hasn’t pass my lips in five years.
At night, after Marty’s bath, our caregiver takes her to bed and starts doing all of the things she needs to do to prepare for the night’s rest. I always go in and check on her as part of the nightly ritual. I went in and listened to her chest and checked her vitals, still paying doctor as it were. As always I bent down, kissed her on the forehead and told her I would come back in before I went to bed.
“I love you,” I said as I was kissing her forehead and then her cheek.
“I love you too,” she whispered, “but brush your teeth before you come back in, please.” She giggled a little bit like a young girl and then smiled.
Marty was always at her best when she was in charge, when she was pulling my chain. I like our lives best when she still tugs hard; for me it really is just like a hug from her.
Monday, February 14, 2011
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.
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.
Tuesday, February 8, 2011
Crying Over the Right Things
Out of the blue she said, “You’re doing a really good job,”
I said, “Of what?”
“Taking care of me.”
In my life I have done some things, I have been some places, I have received some accolades. I have been praised by people in high places who had good reason to praise me, I have received awards, I have even had standing ovations after I spoke at a couple of gatherings. I love praise and admiration; I loved it when I was successful at my job, I’m a middle child, I live for approval.
None of that compares with the sweet, unprompted praise from Marty, “You’re doing a real good job.” The things that are most important, the words that mean the most have changed for me. Perspectives change as life affects you.
Somewhere along the line my feelings, the intensity of my feelings, my emotions have been amped up several notches. Small words of praise and kind phrases mean more, failure has more consequence, and fear is very real. In our previous lives Marty was the fiery one, the one who laughed the loudest, cried the longest and savored life the most. I enjoyed things, I felt things, but not like Marty, not to the same degree or extent she did.
Today, Marty’s affect is pretty flat. I know she experiences joy, fear, sadness, and the entire panorama of emotions; she simply is not as obvious with her feelings, you have to really know her and understand how her eyes speak for her. Me, my eyes, my mouth, my facial expressions have all combined to betray my faux stoicism. I have become the one who cries easier, who laughs louder and who carries their emotions more for the world to see.
The reason for the role reversal is very simple; the journeys we have been through have created a complete new normal for both of us and have emphasized the critical stakes of our day-to-day existence. Normal life mistakes, sins of omission, inaction have much higher consequences. When life’s events present you with the opportunity to look at your wife and see her slipping away from the here and now, when you have the chance to say to her, “don’t you leave me now”, it gives you a different perspective and life feels more intense and decisions feel more impactful and important.
In our life fear, guilt, distress and anxiety are all more amplified but, so are the joy, gratitude and love. Hearing Marty say, “Good job”, or “I love you” means more to me today than ever before and have a lasting impact on my day and my entire life. These simple words of praise far outstrip any past successes.
Perspective is an interesting thing. So often we don’t even know we have lost it and then we can’t find it when we most need it. Too often we bask in the unimportant, we revel in the minor. For me, for us, it took earth shaking changes to gain perspective, to understand what is really important for our lives together. I’m glad I found it, I’m glad I have a better understanding of the importance of our union and Marty’s approval, I wish I hadn’t wasted so much time searching for the golden ring in other places.
The words, “You are doing a really good job,” have never meant so much.
I said, “Of what?”
“Taking care of me.”
In my life I have done some things, I have been some places, I have received some accolades. I have been praised by people in high places who had good reason to praise me, I have received awards, I have even had standing ovations after I spoke at a couple of gatherings. I love praise and admiration; I loved it when I was successful at my job, I’m a middle child, I live for approval.
None of that compares with the sweet, unprompted praise from Marty, “You’re doing a real good job.” The things that are most important, the words that mean the most have changed for me. Perspectives change as life affects you.
Somewhere along the line my feelings, the intensity of my feelings, my emotions have been amped up several notches. Small words of praise and kind phrases mean more, failure has more consequence, and fear is very real. In our previous lives Marty was the fiery one, the one who laughed the loudest, cried the longest and savored life the most. I enjoyed things, I felt things, but not like Marty, not to the same degree or extent she did.
Today, Marty’s affect is pretty flat. I know she experiences joy, fear, sadness, and the entire panorama of emotions; she simply is not as obvious with her feelings, you have to really know her and understand how her eyes speak for her. Me, my eyes, my mouth, my facial expressions have all combined to betray my faux stoicism. I have become the one who cries easier, who laughs louder and who carries their emotions more for the world to see.
The reason for the role reversal is very simple; the journeys we have been through have created a complete new normal for both of us and have emphasized the critical stakes of our day-to-day existence. Normal life mistakes, sins of omission, inaction have much higher consequences. When life’s events present you with the opportunity to look at your wife and see her slipping away from the here and now, when you have the chance to say to her, “don’t you leave me now”, it gives you a different perspective and life feels more intense and decisions feel more impactful and important.
In our life fear, guilt, distress and anxiety are all more amplified but, so are the joy, gratitude and love. Hearing Marty say, “Good job”, or “I love you” means more to me today than ever before and have a lasting impact on my day and my entire life. These simple words of praise far outstrip any past successes.
Perspective is an interesting thing. So often we don’t even know we have lost it and then we can’t find it when we most need it. Too often we bask in the unimportant, we revel in the minor. For me, for us, it took earth shaking changes to gain perspective, to understand what is really important for our lives together. I’m glad I found it, I’m glad I have a better understanding of the importance of our union and Marty’s approval, I wish I hadn’t wasted so much time searching for the golden ring in other places.
The words, “You are doing a really good job,” have never meant so much.
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