Sunday, December 26, 2010


Our lives are filled with many days, which are filled with many moments. We look at our lives and we see good days, bad days, and days that are just marking time. Each of those days, like Christmas day, like this very day, are filled with moments, good moments and bad moments.

I’m a golfer, well I’m not a golfer so much as I play golf, badly. When I play golf, I enjoy the fraternal time, I enjoy the time outside, I enjoy moments of the golf. A round of my golf is generally comprised of about 100 swings at the little white ball. Fifty of those swings are reasonably satisfactory, forty of those swings make me wonder why I play golf, and ten of those swings are sweet, solid and pure. Those swings, when the ball flies straight and true, are the reason I love to play golf.

Thus is life, comprised of moments of great joy that can erase the bad and raise the mundane.

Christmas day, a holiday centered on the family and the birth of hope, is an intense study in this cycle of life. It is filled with the mundane, the cooking, the cleaning, and the putting up. It is nicked by bad moments of arguments, ill memories, missed gifts and the emotional trash we all get to carry.

The day is also painted and frozen in time with moments of pure bliss like watching your baby grandson walk through the living room banging together two pieces of a cardboard box like cymbals. Those moments, many or few, raise the day.

Marty was just coming out of her room for the day as my sister and her family made it to our home. My sister, Martha, was wearing a necklace that was a small replica of a string of multi-colored Christmas lights that lit up and blinked off and on. As she bent down to greet Marty and kiss her on her cheek Marty noticed the necklace and commented on the lights. Martha asked Marty if she had a necklace like that to which Marty said no. Martha looked at Marty, lifted the necklace from her neck, gently placed it around Marty’s and said, “You do now.” Marty wore the necklace the rest of the day; Martha raised the level of the day.

As lunch time approached Marty and I sat at the dinner table and watched as our children worked to prepare the Christmas meal for my whole family. There was a lot of cooking, some cleaning, some hustling, some bustling as our kids stepped up to feed my parents, my sister’s family and my brother. They were dealing with the reality of the day; we had the gift of being able to watch the ebb and flow of the moments of the day.

As Marty and I sat at the table our daughter-in-law, who is almost six foot tall and wonderfully slender walked out of the bedroom carrying our grandson, his smooth alabaster skin matched with the alabaster skin of Sarah, his blue almond shaped eyes sparkling as he shook off his nap. It was a beautiful young mother clutching and holding her perfect apple-cheeked child. It clearly was a moment above the mundane amidst the chaos of the day.

Tonight as we watched a football game after the carnage of the day, after all of the presents, the food, the visiting, the cleaning, I sat, half watching the game, the other half listening to Marty hum as she watched the game and then hearing Sarah, as she sat beside her start to hum just slightly, the two of them humming almost in perfect sync without any mind of the other; another moment that overwhelmed the mundane, that conquered the any bad parts of the day.

Days like today have the potential to be nothing more than a torrent of overwhelming stimuli. Days like today have the potential to push Marty to exhaustion. Days like today have the potential to push every anxiety button I have. Today, though, was one of those special days that was raised past the turmoil and pushed past the mundane to a level of contentment and bliss. It’s a whole lot easier to find the great moments when you are looking for them and when you have lots of help.

Friday, December 24, 2010

Changing Expectations of Christmas

It’s Christmas, that most wonderful time of the year, so it’s prime time for me to get my fretting and angst going full speed. It’s the perfect time to set unrealistic expectations and make false assumptions.

For holidays when I was gainfully employed I worried about getting time off, I worried about getting called in, I worried about who we were going to spend the holiday with, I worried about people liking the gifts I had chosen, I worried about getting and paying for the gifts; all really important stuff if your life is normal.

Our new life dictates an entirely different set of concerns. Today, with Marty, I’m mostly focused on how she feels, to the point where she accuses me of being just a tad bit hyper vigilant. Yes, that pretty well paints my picture; I’m on point like a German short hair.

The new Christmas worry, dictated by the strokes, is will we get through the holiday without a medical issue, will we make it through the celebration without an anxiety driven meltdown by me or a real medical crisis by Marty. The holidays, especially the primo holidays like Thanksgiving and Christmas, are just ripe for me to obsess about Marty’s health, especially since we actually have things we really want to do. When you then realize the doctors’ are not available it ratchets up the anxiety meter even higher.

I also find myself worrying about fulfilling our family’s expectations by being at all or some of the family functions. We want to be with them enjoying family warmth but we never know what might keep us from making a trip or hosting an event, this is when the whole living day to day thing gets harder.

I also worry about meeting our own expectations desires. We both want to be a part of the celebration in as many ways as practical without exhausting both of us. I love taking Marty places and doing things with her and I think she really enjoys being in the thick of the holiday chaos, but it takes a lot of energy for both of us and there is a fine line between exhausting and enjoyment.

Since the strokes we have missed some holiday celebrations, we have missed some birthdays, we have missed part of the ebb and flow of life. Since the strokes we have needed to adjust our expectations but it is especially hard this time of year to make that adjustment. Feeling separate from the happiness of special times is one of the hazards of our life, it just is. We don’t choose it, we just live through it remembering there are many days in a life and real happiness comes when most of those days are good.

It really does come down to setting appropriate expectations. It really does come down to establishing reasonable preconceived notions of how things “should be.” Take for instance this recent conversation I had with Marty while sitting watching some inane television show. It’s a perfect example of expectations gone awry.

Without looking at her, I say, “Marty, I really love you.”

“I love you too, a lot.”

“I love you more than you love me, “I answered, playing the I love you more game, fully expecting, fully assuming she would come back with the appropriate, “No, I love you more.”

“I bet you do,” she says, never taking her eyes off the TV.

Flummoxed, I just sat there for a minute and started to laugh. “That’s not what you’re supposed to say.”

She laughs a bit and said, “I know.”

You have to watch out for expectations because everything changes, even sweet nothi

Monday, December 13, 2010

We Don't Get to Choose

Wednesdays are movie days for Marty and me. We go early in the afternoon when there is virtually no one else at the theater. For someone who has worked all their life going to the movies in the early afternoon in the middle of the week is positively decadent, but then I’m a real bon vivant.

This week the movie choice was “Love and Other Drugs” a decent sort of romantic kind of comedy thing starring Jake Gyllenhaal and one really hot Anne Hathaway. The plot follows a shallow pharmaceutical salesman (Gyllenhaal) who meets weird Maggie (hot Hathaway). They have a lot of naked sex, eventually fall in love and break up because Maggie has stage 1 Parkinson’s. The line that got me was when she said, “I will always need you more than you need me.” It felt so familiar.

Gyllenhaal’s character, Randall, is faced with the most basic of questions, will I stay or will I go. Maggie bullies Randall into leaving and eventually he leaves Maggie to the natural course of the Parkinson’s. Randall is just like most a lot of us who are faced with a partner and catastrophic illness, we ask ourselves do I leave or do I stay.

I would be lying if I didn’t admit to thinking about bugging out from time to time. I have plotted; I have calculated how I could do it and still feel like a human being. I could find a great retirement home for Marty; I could get her set up, then leave, just go and never look back except to call the kids from time to time.

The overall feeling of anxiety and stress for caregivers is at times overwhelming. The worst part is that care giving is never-ending and the only true end is the worst end, death. The concept that cures are not forthcoming and that Marty will never really be better than she is right now, has always been the most difficult part for me to accept. I can do anything for a finite period of time, forever is a difficult concept when you are talking about caring for someone who cannot care for themselves.

I’m not entirely sure why leaving or staying was never a real choice for me. I’m not amazing, I’m not particularly benevolent or selfless, I’m not a natural caregiver, I’m none of those things. It has always felt like staying and taking care of Marty was the only right thing to do, it was the only thing I could do. Staying was not just the right choice, it was the only choice.

I remember wondering why Marty’s father did not put her mother into a nursing home after her health continued to decline. Marty asked him. He said it just wasn’t the right thing to do. Marty thought he was afraid of loneliness and facing the reality of his wife’s situation. I know it’s because he never really had a choice, it was what he had to do because he loved her, because it was what he promised her when they married, that he would care for her even when it got hard. I didn’t understand before, I do now.

There are millions of people today who provide some level of care for their spouse, their child, their parent, their partner or their relative. I can guarantee that almost all of them have at one time or another said, “screw it, I’m out of here,” and then in spite of it all stayed, not because they were saints but because it’s just what so many every day people do, it speaks well of the human condition.

Every time I have ever thought about ditching the whole thing I see Marty, I see her sitting in her wheelchair or laying in her bed and what I see is my wife who I love and I know loves me even when I want to run. What I see is a woman, who has had so much of the best parts of her taken away, yet she still smiles, she still laughs, she still loves the people around her, she still corrects me and completes my sentences, she still really loves me and she really needs me to be better than I am. When I think about it, when I think about the line in the movie about her needing me more than I need her, I’m not sure. I suspect the cold truth is I need her every bit as much as she needs me and I’m happy with the choices I’ve made.

Tuesday, December 7, 2010

Finding Graceful

Marty and I watched and listened as the trio gently played their strings. The classical music filled the lobby and the three college students, fixated on their instruments, entertained the frail, broken audience in the sub acute care center. The crowd was largely old and mostly very ill or recovering from being very ill. I sat there in the faux living room and thought about how our somewhat inauspicious introduction to sub-acute care had not necessarily belied the physical and spiritual grace we would find there.

Our first day there had come after a tough stay at a very crowded hospital. When they came to move Marty from the hospital to the new facility we were not suspecting or even looking for grace, we were both simply afraid.

Marty and I were in her hospital room when Big John, a huge man with an irrepressible smile, came and quickly and effortlessly scooped Marty out of her bed and into her wheelchair. I had seen how difficult it was to move Marty at this stage and held my breath, trying to help, trying to stay out of Big John’s way. His smoothness and his grace for such a big man were perfect.

As we made the move from the hospital to sub acute care fear, concern, and emotional exhaustion just flooded both of us. I was afraid of what I did not know, I was afraid because Marty was afraid..

As it turns out Marty’s room wasn’t ready so we had to sit out in a small living room area. The television was on, the sun was coming through the windows but all I could focus on was the overriding, oppressive, sweaty fear. Marty was cold, it was January, so I wrapped her in a blanket and sat as close to her as humanly possible.
It was the start of a three month stay there and a six month ordeal to get her home.

Over the next days and week we found a rhythm and got to know the nursing assistants who were the caregivers, the people on the front line caring for Marty. Knowing the people, knowing the routine didn’t completely dispel the fear, but the routine and rhythm began to help. I spent almost all of my time there with Marty; she was so vulnerable, completely unable to advocate for herself, so I stayed with her or one of our children stayed with her. Marty did not spend one night alone there; someone from her family was always with her. It’s good to have remarkable children.

As I watched the caregivers come in and help care for Marty I caught on quickly to the fact that the more you engaged them, the more they began to see Marty as Marty and not just a patient. We developed a rapport as through their actions they started training me in how I would care for Marty.

Back to the music. What struck me that day as I listened to those artists play their instruments is how similar their artistry was to the caregivers who helped care for Marty. As they moved Marty, as they turned her to bathe her or dress her, as they secured her to help her stand and move to the wheelchair, the best among them were doing it with as much grace and artistry as the musicians playing their instruments.

What I saw in the days, weeks and months at the sub acute care wasn’t always perfect, the lack of perfection drives the need to be there to help advocate for the most vulnerable. What I saw were constant little acts of grace and heroism each day.

I saw the old man come each day to be with his wife who clearly had been hit with a devastating stroke. He was there in the morning before I got there and still there on the days I would leave. His stamina, his desire to be there for his wife was simply astounding.

I saw the really large nursing assistant who came each day when we were there to help clean and dress Marty. I watched as this woman who didn’t appear to be particularly tender talk to Marty in quiet tones as she rolled her back and forth to first put on her shirt and then her pants. To see this woman you would never think of the word grace, to watch her care for Marty it’s what I still think today.

Those men and women who come to your room every day, the men and women who see so many Martys in their career are the people you count on to care for you or your loved ones. Those men and women, when they are good, ply their trade like a practiced cellist, moving with grace, passion and tenderness as the music they make with their work stays running through our minds even today. It makes you want to be graceful.

Saturday, November 27, 2010

Dear God -- Hello

Marty and I both grew up in church-going, God-believing homes. Neither of us grew in God-fearing ways, but in God-loving, gratitude ways. Growing up we always, always said grace; we always said a short prayer before eating. It was the same for Marty and it’s how we raised our children. Someone at our table said a prayer of thanks for God’s food and God’s grace at each meal.

As the kids grew out of the house the concept of prayer at dinner time flew out with the kids. Certainly after Marty’s strokes grace at meal time just kind of vanished, a casualty of busy minds, busy mouths and the distraction of helping Marty eat.

A big holiday meal, meals with our whole family is still graced with prayer, though. Its part of the ritual, its part of our tradition and a means of bringing our family closer together as someone prays blessings on all and gives thanks. I don’t see it as particularly sacred; I see it as a way of remembering our humanity and our relationship to something greater than ourselves.

This year we had a pretty toned down Thanksgiving as my sister and her family was off giving thanks at her husband’s parents and our kids were doing the same with their respective in-laws. So there we were the grouchy old man and his frail, disabled wife all alone.

No, not really. We recruited my parents and brother and they came down for a Thanksgiving dinner at our house at the lake. Since we were out our house, I’m the prayer boss, I either get to pray or designate someone as the prayer deliverer.

As I am bringing Marty from her bedroom to the dinner table I asked her if she felt like offering the prayer. This is not without precedent, she has done this before and she likes being intimately involved in the whole process and I think it makes her feel in touch with the family and our families traditions. She has been pretty talkative of late and I thought she might enjoy this rather low pressure way of standing out in our happy little group. She was just fine with having a chat with God.

I pushed Marty’s wheelchair to the table and we all gathered round, reached out and grabbed hands. Since I was on Marty’s left side and she can’t move her left arm at all I very simply rested my hand on her shoulder, looked at her, gave her a gentle shoulder squeeze for assurance and told our small gathering Marty would offer grace.

I squeezed Marty’s shoulder again and said, “Go ahead Marty, you can start now.”

Marty takes a breath and starts to pray, “Dear God,” she pauses then loudly says, “Hello.”

Never one to close my eyes during prayer in case some fun might break out, I peaked at Marty and she was looking straight ahead and smiling ear to ear like the Cheshire Cat from Alice in Wonderland. It was clear the “hello” was not inadvertent, it was my Marty, the Marty I married saying to God in her casual unpretentious way saying, “Hello, we’re here and we’re ready for a chat with you.”

I waited, we all waited for seconds with Marty snickering and me smiling and stifling a laugh when she continues, “hello God, it’s been a while, it’s been a long time between meal prayers.”

I mumble to myself, “Thank you Marty for pointing out my spiritual failings and lack of religious discipline at our table, I’m sure God appreciates the recognition.”

At this point she could no longer contain herself and she started chuckling, then laughing at her prayer. I couldn’t really help but laugh too as everyone else around the circle kept their heads bound and laughed to themselves.

I prodded Marty just a bit and kind of gently hissed, “Finish it.”

“Thank you God for these people and this food, in Jesus name we pray, Amen,” came out of Marty’s mouth as she continued laughing and smiling. Through her laughter she says, “Goofy prayer.”

I said, “No, it’s perfect, I will always remember, Dear God, Hello.” And we all laughed some more.

It was a small, somewhat non-descript Thanksgiving meal. It had all of the requisite food items, turkey, dressing, potatoes, gravy, peas and some killer chocolate brownies. We shared the meal with people we love and the best part is we said hello to God in a way that exemplified nothing but comfort and realized gratitude. I think God answered with a smile and a laugh.

Wednesday, November 24, 2010

We Live a Miracle Every Day

We are the fortunate ones. Marty and I are lucky to have the means, the time, the energy to make a life with chronic illness livable. I am grateful every day for our ability to live a semi-normal life. I am acutely aware of the wonderful people that have come into our lives over the last few years, people who have made a remarkable and tangible difference in our lives, people who are part of our lives today because of Marty’s illness and God’s serendipitous nature to whom we are always and forever thankful.

I am thankful for Marty’s caregivers. Erica, Nikkie, and Renae are at times like our daughters, at times they are like extensions of Marty, they are always more than just caregivers. My partner, my wife always made me whole; she always was another pair of eyes, ears, another heart, another mind who made me better than I am alone. I miss that part of Marty more than I ever thought. Erica, Nikkie and Renae fill part of that void. Erica makes sure I don’t go around dressed like the old hippie I am, Nikkie has the courage to tell me how I’m acting and Renae lets me be afraid and angry. They are all a part of our family, new daughters that make a difference in our lives.

I am thankful for Great and Wise and all of the people who work with him. He is the doctor who sets the standard for a faithful and caring provider and his staff emulates him. These people care for Miss Marty, they smile when they see her, the touch her, they talk to her, they recognize who she was and who she is, they treat us both like people. More than any group I know, from the nurses to the wonderful ladies who answer my phone calls, they have made our lives better, they have made my job of caring for Marty manageable. Great and Wise practices the art of medicine like a classic artist, with consummate love and passion.

I am thankful for my daughter’s boy Lyle and the insight of my daughter in finding him. Who knew? I am thankful my daughter had the wisdom to move past other men and find a one who knows how to love someone else, who is kind, who is attentive, and who has an actual job. I am thankful that I can trust him to be a true and willing partner to my daughter.

I am thankful for my grandson, now one year old. I have never seen a smile so pure and eyes so blue and perfect. When he walks, when he smiles, when he reaches his arms to you he reminds you of how beautiful life can be and he gives me assurance, every time I see him, that God is real. He is a gift, a gift from God, given to the care of my children who have been wonderful, doting parents.

There are so many, so many people. Our family, our children, and our friends who touch our lives daily; who are all active in our lives each and every day cheering and loving Marty. Their faith and loyalty move us forward each and every day.

Travelling our life, moving through our journey, getting to this part of our journey is nothing short of a miracle. For Marty to be here, with me, and for us to continue to grow together and strengthen our relationship is the most incredible part of our life. There have literally been hundreds of people who have been part of our trip and one way or another helped get us to this place. I know you all; I remember each of you.

Monday, November 15, 2010

A Call and Response

“You are my sunshine.”

“My only sunshine.”

“You make me happy.”

“When skies are gray.”

A call and then a response; I would make the call; “you are my sunshine,” she would respond, “my only sunshine.”

She lay there in the bed, barely awake, barely alert, and barely conscious. She was only tenuously connected to the here and now. I didn’t know what she knew, what she understood, how connected she was. I was lost and didn’t know what else to say or do so I whispered in her ear, “you are my sunshine.”

I don’t know what I expected, I know what I hoped. I hoped for a response but I wasn’t sure I would get one. I wanted to know if she was connected enough, if there was enough cognitive functioning to recognize a song she had so often played. I wanted to know if her memory was working well enough to remember a song sung so many times.

Some of our best times were with Marty playing the piano and me sitting on the piano bench beside her. She played all kinds of songs but we mostly sang from a Reader’s Digest Book of Treasured Songs like, “You are my Sunshine”, “Side by Side”, “Down by the Old Mill Run”, and “Show Me the Way to Go Home” (her Dad’s favorite). We sang those songs countless times because I knew the melody and could stay on the melody while she sang harmony especially if I stuck a finger in my ear so I couldn’t hear Marty sing; otherwise I had to sing the same notes she did. I’m not a skilled choral voice. These were easy, fond memories I hoped were stuck in parts of her brain unaffected by the strokes.

It’s immediately what I reverted to when Marty was so sick from the 2nd stroke and laying in the ICU at Providence. It was my test for her cognition, it was my way of finding out what parts of her were still there, and if she knew I was there. I simply whispered in her ear, “You are my sunshine.” It was the best way I knew to tell her what she meant to me.

Day after day I would do the same thing. I would quietly call, “you are my sunshine,” she would respond in a faint, “my only sunshine” and we would continue the call and response all the way through the song, even through the pointedly poignant 2nd verse: “the other night dear, as I lay sleeping, I dreamed I held you in my arms, when I awoke dear, I was mistaken and I hung my head and cried.

Every time we did it, every time I got a response to my call I felt better, I felt connected, I felt it meant she was still there for me and she knew I was there for her.

We sing together today, not very well, but we sing. The strokes apparently robbed Marty of the fine vocal muscle tones needed to make a fine musical tone because we are off-key, at best. That’s all right, I don’t care, we still sing. She has taught me all of the words to “I Love You Truly” and that’s what invariably comes out when I say to her, “I love you.” Then we sing, a duet, completely off tune, completely out of sync, embarrassing all within ear shot, except us.

Thursday, November 11, 2010

Looking for Passion

Great and Wise, Marty’s amazing doctor, once told me a brief story about a bad weekend he once had. He told me he was home with his family and he just didn’t feel himself and was being a bit of grouch around the house. Apparently Mrs. Great and Wise caught on to the bad mood kind of weekend he was having and sent him out of the house, to work. He said he went to his clinic, talked with a couple of patients and actually saw a couple of people and immediately felt better. This is a guy who loves what he does, who is driven to help. What I heard was a man living his passion.

I read and follow the blog of a woman I have never met named Kit. Kit is a remarkably multi-talented woman who occasionally posts videos of herself playing Native American flutes she has made. She once posted a succession of videos of her working and smoothing and then playing one of her flutes. What I saw was a woman passionate about what she was doing. I don’t know Kit, I admire Kit, and I could see through the filter of the electronic maze how much she loved what she was doing.

My trainer, Gretchen, loves to make me sweat. She has this really delicious and wicked smile when I groan just a bit as she hands me the medicine ball. She starts her day somewhere north of 6 a.m. with something called a boot camp which I suspect is about as bad as it sounds. She is still jazzed, smiling and challenging at the end of her day because she loves what she does. Gretchen is driven to physically challenge herself and her clients because of her passion.

Marty was a passionate woman about many things. Marty would play the piano until this one little spot in her back really started to ache. I can’t tell you how many times I watched her play, eyes closed, head moving just a little to the beat of the song, completely lost in the music. Our first major furniture purchase was a piano, it was not a nice to have, it was a must have because of her passion, her need to be touched by the music. She felt a palpable connection and passion to the piano and the music she made from it.

We once had the opportunity to tour the Sagrada Familia, a Catholic cathedral in Barcelona Spain. It’s been under construction since 1882 and is still only about ½ finished. That’s what I saw, this immense very elaborate cathedral that needed to be finished. Marty, looking at the church with different eyes and with a different heart was entranced by the soaring spires, the carvings, the stories the building told her. She walked around the building completely amazed with tears in her eyes, she was moved, I just kept moving and looking and watching her.

I have always been envious of people like Great and Wise, Kit, Gretchen and Marty. I always wanted to have a vocation or even an avocation where I felt great passion. It just never was.

Yes I loved and cared and was passionate about my family and my children. Yes, as a born and bred Texan I was and still am a Dallas Cowboys fan (as hard as that is now), but I have always struggled, I have always wanted to feel that burning, driving need to do some thing. On the whole I enjoyed my work, I loved working with people, but I never once felt a compulsion, an obsession to do it. It just never was, until…..

…..Until I saw Marty lying in the ICU at Parkland Hospital after the surgery from her first stroke. As I said, I had felt passion before, the good and bad kind, the love and anger; I just hadn’t felt it the same way I did when I first walked down the aisle of the ICU and into Marty’s curtained off area. When I saw her laying there with all of the tubes and machines and blood crusted in her hair I found my great drive, my beautiful obsession, my passion.

Marty always wanted me to be more passionate, more demonstrative about things, about her. She clearly went to a lot of pain and trouble to get me there. But there I am, what never was, is. I now completely understand and I feel the obsession, I feel the compulsion, I feel the need, I feel the passion. It took me 50 years to find my passion and it turned out, like so many things, it was always there, right beside me.

Saturday, November 6, 2010

Small Gifts

I once wrote that we gauged how good or bad our weeks were by the number of times we visited the offices of Great and Wise. By this measure, and by almost any other measure that makes sense for a chronically ill woman, we are doing great. I hesitate to trumpet this too much lest I be guilty of moving past the living day-to-day thing, but all-in-all, Marty is doing well, consequently Marty’s husband is doing well.

Since May Marty has been medically ill enough for antibiotics just once and I suspect that illness was a virus because she gave it to me, bless her heart. I, who have the good health and constitution of wonderful ancestors, have been on antibiotics more than Marty over the last few weeks due to my little tookus issue last month. Given Marty’s history of infections this is wonderful territory for us.

This is not to say we haven’t had some issues which led to a couple of fascinating doctor visits. A swelling face due to blocked salivary ducts and shooting blood out of your eye like a horned toad will lead to some teachable moments. Neither of these issues was serious, in retrospect, they were both a bit titillating to the uninitiated.

As the months of favorable health have moved on (yes, its six months and I’m counting) we have been able to do more things, see more people and experience more life in general. As the months of feeling good pile up its clear Marty feels better and is somehow just a little bit stronger, a little more attentive to her surroundings and a lot more communicative.

Yesterday as I read her our last post, about me trying to understand what she is thinking and feeling, she listened intently as I read. The last line of the post read, “Just once though I would like to really be able to see behind those clear blue eyes and know and really understand what it really feels like for Marty.”

I looked at Marty and asked the obvious, “What do you think? Is that okay?”

She looked at me for second and said, “No you don’t.”

“No I don’t what?” I asked.

“Want to know what it’s like inside my head.”

“Why not?”

“Because the inside of my head is awful, it sucks, and it just doesn’t work right” she replied, looking straight at me.

There wasn’t much for me to say as we looked at each other. Aside from the birth of our two children Marty was always most proud of her intelligence, her communication skill and her ability to understand her surroundings. The strokes took what she thought was the best part of her.

I think the strokes have proven that her perseverance and spirit are and have always been the best part of her.

It was time for lunch and I asked her if she wanted to go supervise me as I made her world famous, minimalist tuna salad. Equal parts of Miracle Whip, sweet pickle relish and solid white tuna is all that’s required (I know, way too sweet for most of you). She wanted to go oversee my cooking.

I got up, turned her around and pushed her into our kitchen and started making the tuna salad while making small talk and asking her if I was using the right proportions. She was pretty comfortable with my technique but threw in an occasional hint.

I picked up the bowl, moved over to the other counter, set the bowl down and looked at Marty to ask if she wanted me to toast her bread. Before I could ask her she looked at me and said very simply, “I love you.”

I like it when she feels good even though the improved cognition can sometimes magnify her losses. I like it because she sometimes surprises me with small gifts.

Tuesday, November 2, 2010

Seeing What She Sees

I look in her eyes. They are still blue, still clear, and always searching. I look in her eyes trying to see past the eyes, trying to see inside her to better understand how she sees me, her family and the world around her. I try and see and understand what she sees and understands I want to know what her brain tells her about her life.

Before the strokes Marty‘s brain was a marvel. Her mind was quick, sharp, very deep and constantly moving and working. Marty’s working brain and her narration of its working was constant. She drove all of our conversations, she initiated most of our deep and shallow discussions, and she could literally fill the air with thoughts. Honestly, it could be exhausting trying to mentally keep pace with her.

For Marty, nothing was ever over, nothing was ever just right; no solution was perfect because she was constantly perfecting everything. For Marty the last word was hers, always. It could be painful and unproductive but Marty was always thinking and trying to find a better way. I find it completely remarkable that I miss that dynamic. I fell in love with Marty’s mind and her quick verbal skills and I have spent 30 years trying to get inside that amazing head and understand how her thinking drove her behavior and often times, my behavior.

The first stroke, the ruptured aneurysm, slowed her brain. Marty was no longer overt in her thinking, she was not proactive in conversation and she became completely reactive. I would watch her and see how she reacted and I think, for her, thinking, problem solving must have been like using a memory clogged computer, it works it’s just really slow and monumentally frustrating.

The change was real, markedly different and sad. I was stuck trying to initiate conversation and trying to carry discussions. There was a lot of unfortunate silence as I tried to step up to my new role. At the time I didn’t realize how much more there was to lose.

The 2nd stroke took a lot more of Marty’s brain and made it even harder to get inside her head and understand her and her perception of life. When we first came home Marty was so weak, so strained in her thinking it was painful to watch her try and verbally communicate; we eventually surrendered to a short-hand sign language to get a simple yes or no.

The brain, Marty’s, mine, yours is a remarkably resilient organ. Over time Marty found new neural pathways and is much better at talking and communicating. It is almost exclusively in a responsive manner, but it is talking and communicating nonetheless. Communication is still slow, it’s still stilted, it’s still completely reactive but her ability to talk with you, to you, has improved a lot, it’s like we defragged the computer but the hard drive is still really slow.

What I want from Marty is for her to be able to advocate for herself just a bit. I want to know if she’s hot or cold or hungry or thirsty. I want her to be able to help self-diagnose, to be able to say without my prompting, I don’t feel good and this is what doesn’t feel good.

Mostly I want to know if she feels secure, if she feels safe, if she feels some sense of contentment and happiness. Gone are the days when the woman who drove our lives and our discussions so much of the time. We can live with that, we can live with more silence in our lives; we can and will live with what we have. We have come so far and I am forever grateful for our life and where we are. Just once though I would like to really be able to see behind those clear blue eyes and know and really understand what it really feels like for Marty.

Wednesday, October 20, 2010

This is Way Too Much Information

The saying goes something like this, “everyone has one, an opinion and a hole in their butt.” Women have them, men have them, children have them, and even senior citizens have them. We need them, we have doctors especially for them, we laugh about them, and Marty finds amazing humor in talking about them, the hole in our arse.

For the last week Marty has been laughing at me because of the hole in my posterior. You are about to get entirely too much information and this is way too long, I know that, but what follows is a big event in my life and for reasons that will become painfully apparent I have learned an entirely new way for my body to say, “hey, wake up I’ve got a surprise for you."

About a week ago I began to feel a bit of pain “down there.” It wasn’t bad, it wasn’t something new and I did all of the requisite pain “down there” kind of remedies. I complained to Marty, told her I had pain in the hole of the butt and she said, “I’m sorry” and then laughed as I rose gingerly from her bed and waddled down the hall. At least I was providing some comic relief for my bride.

The pain steadily increased. I didn’t sleep well that night, the ibuprofen was providing no relief and I found it amazing how often one uses the internal muscles of the butt to sit up, to get up or roll over. Every time I moved it hurt.

I had planned to tough it out for the week to see if the home remedies for hole in the bottom pain would finally take hold. By the morning I had given up on being tough and called my doctor and managed to get in to see him that morning. I told the good doctor of my pain and for my troubles I got to assume the position, elbows on the table, pants down around the ankles. I told the good doc what I was experiencing and he looked a bit concerned and said it didn’t sound like typical pain “down there” kind of stuff. He performed the requisite exam (I know, ewww), asked about fever, gave me a couple of scrips and said call back in two days if I didn’t have marked improvement.

I did not find any relief over the two ensuing days. I waddled as I walked, Marty laughed as I waddled and I could only find comfort in my bed on my side. I went back to the doctor as instructed, it was a Friday.

He looked at me and said, “You know, people are going to start talking about us if you have to keep coming in here for this exam.”

I said, “Yeah, we have a hell of a relationship going, I just can’t look you in the eye anymore, but then I guess that’s not what you’re looking at anyway. Maybe you should read some poetry, or something like that.”

We went back to our uncomfortable, but now familiar positions and he did his job and I winced with pain. He said let’s see a surgeon today. In 15 minutes I had an appointment to see a colorectal surgeon that afternoon.

Colorectal surgeons used to be called proctologists. The best advice for picking a proctologist, check out hand size and never go to one that can palm a basketball. I walked into this guy’s office and was immediately impressed with the size and appointments and thought there must be good money in hole in the butts.

I met the doctor, we talked, had a mini-date and he told me to remove my pants and cover up with a flimsy paper blanket. Here I got to lay on the exam table as he wheeled up his stool and put on his head lamp for a better view. I heard him snap on his rubber gloves and when I heard a “thrmmp” sound I said, “That wasn’t me” trying to introduce a little fart humor into a really uncomfortable situation. “No, I know,” he said, “it was my KY jelly.” I’m thinking we’re having fun now. I’m just hoping I really don’t have an attack of flatulence as he peers intently at my tookus.

Dr. Procto (an alias) says I think you have what is called a perianal abscess. Go ahead, look it up, find pictures, it’s impressive. He says it needs to be fixed by draining it and he can do it in his office right now but it would hurt a little bit, just a little bit, but draining the abscess would provide immediate relief. I figured the pain couldn’t be much worse so I breezily said, “Give me a bullet to bite on and bring it on.” My bravado did not last long.

A really cute 30’ish woman who I had already met came in to assist. I’m thinking, can this get any more humiliating. My ass is bare, there are bright lights on it and two people are getting all kinds of sterile (I hope) metal instruments ready for an introduction to the most delicate part of my posterior.

What follows next can only be described as, well, really, really painful. The doctor said I’m going to give you a couple of doses of pain meds and then drain the abscess. His assistant, the really cute and I’m sure competent medical assistant that I will never be able to look in the eye again, grabs my right cheek (not the cheek on my face) and pulls up while the doctor jabs me several times in a very private area with needles meant to alleviate pain. The pain the needles created was a lot worse than hurting just “a little bit.”

I have to say I don’t know exactly what was going on back there, it’s not like a bordello with mirrors; I can only go by what I felt and I felt pierced, sliced and squeezed. I have been through some painful stuff, I have had broken bones, but I have never cried out in pain. At some point in time I was clambering in bare air for something to grip, gritting my teeth and trying really hard not to kick and I finally just hollered, “Ooooh, that’s more than a little pain.”

“Almost done,” Dr. Procto said as he pushed just a couple of more times. “You will be happy to know my diagnosis was correct and the abscess is now clear.” Tears are running down my face onto the exam table and I think, “Was there a doubt?”

The doctor starts putting gauze up my heinie to tamp the flow of goo and blood from the 2nd hole in my butt and suggested I go buy some panty shields. I can’t resist, “So to top off this painful and extremely humiliating experience I now have to wear feminine hygiene products? What a great day.”

It took me a minute to get up which was good because I couldn’t look the doctor or his assistant in the eye. I sat up, no pain; I stood up, no pants yet, but no pain. I got dressed, set up a follow-up appointment and had no pain. It was a relief to be able walk without hurting. I took a tentative cough, it was okay, but I didn’t want to push it too hard. It seemed the assault had reaped great rewards.

Now I know this is way too long, I know this is way too personal but I write this to make my wife laugh and to say those of us with hole in the rear issues require a support group, I’m thinking NAHIB, National Association of Hole in the Butt Issues. Or, maybe just PIA, because that’s really what it is all about, a pain in the ass.

Tuesday, October 12, 2010

Here's Blood in Your Eye

Blood, just a small drop, barely noticeable welled up in the left corner of her right eye. She coughed hard several times as just a tiny bit of blood began in the right corner of her right eye and slowly started to trail down her cheek as she continued to cough. I carefully pulled the long thin catheter from her nose as the blood from her eye moved further down her right cheek.

Erica quickly took a soft tissue and dabbed the tiny bit of blood from Marty’s cheek and said, “That’s new.”

“Yeah”, I said, thinking, “I hate new.”

We sat Marty up from her supine position in her bed as she gasped for the air I had just suctioned from her lungs along with the sticky phlegm. I looked at her right eye and didn’t see any more blood pooling in the eye. I didn’t see any sign of broken blood vessels or any redness in her eye, only the tiniest remnants of blood and tears.

Marty struggled to catch her breath and to breathe normally as I looked at her and as calmly as I could I got her attention on me and said, “Everything’s okay, take slow deep breaths.” Erica gently placed the nasal cannula under her nose and turned on the oxygen. Marty’s breathing slowly began to return to normal as the trauma from the suctioning abated.

I looked at her eye again and could not see any sign of blood and I internally decided to ignore this new event. I was an experienced caregiver, I had seen “new” before and in most cases it was nothing more than an anomaly, a one-off, I could be cool for a change and not obsess about this little event.

It was late. Marty had settled into her bed comfortably, Erica was with her, I went to get ready for bed. I sat in the living room and ruminated on what had just happened. It was bound to be something simple. She had coughed, she had coughed really hard as I had suctioned, it must have been just a small capillary that had burst and leaked a little bit of blood. That was the simplest, most straight forward explanation. I checked on Marty and Erica one more time, they were resting, I went to sleep.

By the next morning I was patting myself on the back for my practical coolness in the face of “new”. I really wasn’t all that cool. Virtually every thought I was having focused on why Marty had blood in her eye. I was beginning to obsess and coming up with all kinds of very unlikely scenarios. It was time to call Great and Wise and see if he could see her today and make sure she wasn’t going blind in her right eye or having a hemorrhagic stroke or some other exotic ailment. I called and one of our friends at the office, Angie, figured out how to squeeze us in to see the good doctor.

When we got into the office I told Great and Wise about our rather harrowing experience and he began to examine Marty, looking at her eye, looking in her ears and last taking his little light and looking in her nose. He kissed Marty on the cheek and looked at me asking, “You ever seen the guy on David Letterman that can suck milk in his nose and shoot it out his eyes?”

He walked over to the ubiquitous chart on the wall diagramming the face, the nose, and the sinuses and pointed to where the tear duct runs down into the nose. He explained, “She has just a small cut in her nose where it bled just a little last night. I imagine when you put the catheter in her nose you nicked it just bit. When she was coughing so hard it probably pushed the blood up the tear duct into her eye pushing a bit of blood out the tear ducts. Just like the guy with the milk only with blood.” The man is a genius.

We left with me thinking better thoughts while talking to Marty about how weird and interesting this whole event was. My initial intuition was right in that it was an anomaly, but it was a really strange anomaly I could not over look. I guess that sort of defines anomaly.

I later relayed this story to Jerry and Luann, Marty’s brother and his wife. Jerry immediately identified with the story in that Jean, Marty and Jerry’s mom, used to literally shot smoke out of her eyes. She would inhale the smoke from her cigarette in her nose and push it through the tear ducts out of her eyes. Jerry said she didn’t do it often because it hurt. I bet it did.

Clearly the body will do some amazing things if you can shoot milk, smoke or blood out of your eyes. I have to tell you it’s really freaky to see it and I’m about tired of learning of new and fascinating body facts. I have become a veritable font of useless anatomical information. If I’m ever on a game show or if you need a phone-a-friend just let me know it may have happened to Marty.

Thursday, October 7, 2010

New Heights Same Life

I was introduced to a concept called the Ladder of Inference by a unique and marvelous consulting group from Dallas called Ann McGee Cooper and Associates. The essential idea behind the ladder is we all tend to make assumptions about events, build on those assumptions and make conclusions based on those assumptions sometimes without ever validating those assumptions. In other words, at times we make stuff up based on what we think we know, not what we empirically know.

Being the somewhat intuitive over reacting fellow that I am, I do this a lot, always have. The other day I was taking a shower (I’m very modest so everyone please close your eyes while reading this, and don’t go oooooh) when I heard my cell phone start beeping with a text message. Now I don’t get a lot of texts and most come from Nikkie, one of our caregivers. At the times she was taking care of Marty in Marty’s room as I showered.

Here’s how the ladder sometimes works. I get a text, I think it’s from Nikkie who knows I’m taking a shower so why would she text me, something must be wrong. My adrenalin starts to pump, slowly starting to overtake my normal good sense as I continue soaping.

My mind immediately starts to rationalize and list the calamities that might have occurred, another stroke, seizure, heart attack? I think it is most likely a seizure and Nikkie can’t leave Marty’s side so she texted me, good for her, good thinking. Now I move to, oh shit, we are going to have to up the anti-seizure meds, it’s going to make her sleepy, she won’t get out of bed and the new medicine will mask other symptoms, this really sucks.

I wash off as quickly as I can without panicking and momentarily think of running out of the bathroom with just a towel to help Nikkie and check to see if Marty is still breathing and recovering from the seizure. I decide to check the text instead. It was from Verizon telling me they had drafted my account for the amount of my bill.

I stepped down a couple of rungs on the ladder but I still hustled around quickly to dry off and dress (you can open your eyes now) because what if my superhuman intuitive powers were detecting some anomaly with Marty before it actually happened.

I walked out of the bedroom and into Marty’s room as fast as one can and still maintain cool points. Marty was dressed, sitting up in bed drinking Gatorade watching some lame move on the Hallmark channel. I said, “Everything ok?” I got, “Just fine,” from both Marty and Nikkie. I decided to step all the way down the ladder.

This is life, it’s certainly my life. I stand at the foot of the ladder of inference daily, sometimes I start climbing and stop, sometimes I get all the way to the top before I realize I don’t like heights and rational thought starts to creep in and I climb down. Ann and Duane, thanks for teaching me about the ladder. I still climb it from time to time but at least I know what I’m doing.

Sunday, October 3, 2010

Smokin' and Jokin' in Heaven

I don’t know how we got there. I never do, I just look around and there we are, sitting outside having another one of those conversations. We were sitting out on our patio enjoying a recent spate of cooler, meaning not over 95 degree, weather in central Texas. Marty really likes sitting outside and just soaking up a few rays. Invariably, without the competition from the TV or other distractions we talk, we actually kind of dialogue. Somehow, some way the subject of heaven and hell became the topic du jour.

Since I’m something of a provocateur, I looked at Marty and asked, “Do you still believe in heaven and hell….as a real place?”

Marty replies, “Yes, don’t you?”

“Not so much anymore,” I said. “I don’t know about places like that. I kind of think of heaven as something we can’t and don’t understand.”

Marty, “Well I still do.”

I just can’t resist so I continue, “Do you think you are going to heaven some day?”

“I don’t know.” Marty says.

A little surprised I asked her, “What about hell, you plan on visiting there?”

“Not unless I have to, no.”

About this time a small wind blew through our back yard and moved some of our wind chimes enough for them to make their music. We both love wind chimes and the sort of natural tones they drift into the wind. Before Marty got sick, right after her father died, she told me when she heard wind chimes it was like her father was talking to her. Consequently I bought more wind chimes.

As the wind blew and caused the chiming she looked at me and asked,  “What do you think he’s telling us now?”

“I imagine he’s telling us he’s up in heaven telling jokes and bossing everyone around. I can just imagine you and your dad in heaven telling jokes.”

Marty mulled this for a minute and said, “I don’t think so, my humor isn’t really all that heavenly.” She’s right, her humor has always been just a tad bit blue, actually a lot blue, but I suspect God would be fine with that because Marty can be really funny and really ribald.

In her previous life Marty was an inveterate story teller and heavy smoker. Smoking was her personal demon and she still feels guilt for having smoked all those years. She wasn’t one of those aggressive, in your face kind of smokers, but she liked to smoke and it was something she did not let go easily. She hasn’t smoked since January of 2006 but she still won’t admit she has quit. She plans on starting again the first chance she gets. All of which leads us to smoking and heaven, or smoking in heaven

Marty, “When I get to heaven I’m going to start smoking again.”

“No, you can’t do that in heaven,” I said. “They don’t have smoking there.”

“Yes they do,” she insisted. “There’s bound to be a smoking section there.”

Okay, you can’t tell dirty jokes but you can smoke, as long as you’re standing in the right spot, maybe like the smoking cage at the Las Vegas airport where they put all of the smokers in a glass room so the non-smokers can point and ridicule. I can see it now, sitting on heavenly clouds in a smoke filled glass room puffing away on your Marlboros with St. Peter calling out, “smoke’em if you got’em.”

I don’t know if any of this is right and I don’t plan on finding out any time soon, but I bet if you are in heaven’s smoking section they will be telling dirty jokes and laughing.

Tuesday, September 28, 2010

Finding Myself at Home

I asked Marty, with just a tinge of guilt and remorse, “Do you mind if I go this weekend?”

She looked at me and immediately said, “Not at all.”

“Does it make you mad, does it bother you that I’m not taking you?” I probed, trying to assuage my ever present guilt.

“Yes, but only because I’m not well enough to go.” she replied, letting me off the hook just a bit.

As I drove through central Texas to west Texas that brief innocuous conversation played in my mind repeatedly. Going to my high school reunion has always been a great trip, with Marty. I was going alone, flying solo and I wasn’t too sure how that would feel, I wasn’t too sure if I would be too sad, too melancholy, too lonesome to enjoy my return to my home town.

As the hue of the soil around me began to change from dark brown to red, as the oak trees began to shrink and diminish and the mesquite trees began to take over I got a little antsier, a little bit more anxious. “Yes, but only because I’m not well enough to go”, kept playing in my brain. I already felt a little lonesome; I already felt like I had left my wife behind and alone, I was building to a great pity party for myself.

I’m not a solo kind of guy. Marty and I have been married most of our lives and she was always a great security blanket and name rememberer at social functions. She was an anchor for me keeping my grounded. One of my best buds in school, Skip was going to be there so I designated him my weekend date to avoid the potential feelings of insecurity and loneliness. I didn’t consult him about the whole date thing, but what’s a best friend for anyway?

I discovered a couple of things at this reunion. No massive revelations, but a couple of things became clearer to me and made this past weekend almost an epiphany. I came to understand, by sitting and talking with old friends, where so many of my thoughts, feelings and opinions were born. I remembered, as we relived old days and talked of current days, how we would spend hours talking about life, about people, about God, about nonsense. I remembered how we wanted to reshape our world. I realized in this talking, in this arguing, in this exploring we were really developing our own thoughts and personalities; we were starting to become real people.

It wasn’t what we talked about so many years ago that was important, it was that we talked. It wasn’t what we argued about, it’s that we argued, it wasn’t what we discovered as we explored it’s that we explored. These people, these same people from 40 years ago helped me develop a way of thinking, a way of exploring and the freedom to think outrageous thoughts. This is where the parts of me I most value started.

I also discovered that it’s really hard to feel alone when you are with and around the people who helped shape you who know your foundations. I realized that regardless of the years and time this town, these people, has had a permanent, indelible effect on me. While feelings of loneliness are an inevitable part of all of our lives and certainly more present in mine than ever before; while I did miss Marty, while I often thought of how she would have enjoyed herself, I was with friends and felt a sense of community and common bond I have not felt in years. Personally, I had a great time.  In fact we had such a good time, just like years ago, our hostess with the mostess had to ask us to leave, both nights, it was worth it.

I lived in Colorado City for 12 years, for my first grade to graduation. I haven’t lived in this remote, dusty west Texas town in almost 40 years. I hadn’t been there for any time at all for 20 years. It’s a long way away, a long time ago, it’s in the middle of sage, cactus and mesquite trees and I have very little reason to visit. I lived there only 12 years of my life almost 40 years ago, but somehow this remote outpost of Texas is still my home, I’m from west Texas.

Tuesday, September 21, 2010


We sat there together and heard it week after week, Sunday after Sunday.  We heard it from Jimmie our minister and we heard it from other ministers at virtually all of the other churches we have attended.  We heard it and were moved by it as my niece spoke the words at her own ordination.  It is one of the things Marty remembers, it is one of the things that moved Marty then, it is one of the things that still captures her.
Go out in to the world in peace;
have courage;
hold on to what is good;
return no one evil for evil;
strengthen the fainthearted;
support the weak, and help the suffering;
honor all people;
love and serve the Lord,
rejoicing in the power of the Holy Spirit.
The charge fits at the end of the service, the time when you receive instruction to carry your faith from the safety of the sanctuary to the ugliness of the real world.  To Marty it was always one of the most meaningful parts of the service, consequently she can still recite it. 
Marty was certainly not an overly religious woman, in fact she was and still is irreverent, but she was and remains a spiritual person.  She felt a fellowship with the brokenness of the church, she was moved by the forgiveness of the people of the church and the concept of undeserved grace, and she drew hope from the teachings of the church.   She found a home in the Presbyterian Church because, as she said, “Presbyterians are like the Miller Lite of Christianity, all of the religion but a third less guilt.”  Rim shot.
She, I, am often amazed at the sense of connection felt in our church; never more so than when I sat in my sister’s church in a service of ordination for Presbyterian Preacher Kate.  I sat in the sanctuary next to my brother, next to my father, next to my sister watching my niece be ordained.  I sat in the sanctuary and listened as my niece spoke the words of the charge in her new role as a Minister of the Word and Sacrament, “Go out into the world in peace.” I sat and listened to the words as Kate read them and in the background, just barely audible I could hear Marty’s hum as Kate continued, “have courage, hold on to what is good.”
I was touched by how the words coming from my niece connected me, my family, and the other people of the church to others who heard those words earlier in the day, “return no evil for evil.”  I was touched and remembered how the words Kate was reading reached Marty, “strengthen the faint hearted,” and I could hear Marty’s hum gently adding to the background of the moment, “support the weak and help the suffering.” 
I turned from where I was sitting, I looked to my right and behind me and saw Marty as the words continued to roll out, “honor all people.”  Marty had looked to where I was sitting and smiled, a smile of recognition, a smile of contentment, a smile of connection, “love and serve the Lord.”  I smiled at Marty, a smile that I hope said I love you and I’m proud of you, as Kate ended the charge, “rejoicing in the power of the holy spirit.” 
Marty continued to look at me and kept humming.  I was touched by the moment.  It was one of those serendipitous events that touch you so deeply you know as you experience the moment it will be etched not only in your mind but in your heart.  It was one of those moments where things were in balance, where the feelings of connection with Marty, with family, with church, with God, with history were in tune and clearly part of our life’s rhythm. 


Thursday, September 16, 2010

A Saint with Rhythm?

I like a rhythm to our life. While Marty was never a rhythm kind of person it suits her now. Some might call it a rut, I call it a rhythm. Having a rhythm to our life, having a time and place for doing things makes it a lot easier to care for Marty. Doing things in order, doing things when they need to be done, doing things how they need to be done makes for a little bit more predictable life for us and predictable ain’t all that bad in the care giving business.

Tuesdays I go to the grocery store, in our town it’s an HEB. It’s a great store, it’s a big superstore where you can get potato salad, zucchini, organic peanut butter or a big screen television if that’s what blows your dress up. The TVs make the place a little cumbersome but they have really good produce. I go to the store on Tuesday mornings because, well, that’s what I do to keep the rhythm in my life and keep our produce fresh.

Tuesday morning the store is populated with older folks and young women with young kids. It’s great sport to weave my basket in and out of the catatonic shoppers and crying infants as I make my way up and down the aisles.

As I was moving down the snack aisle, you know the one, the one with the chips (this is not a good area for a carbaholic) I saw a slight, older woman struggling to load an eight pack of water bottles into her cart. I pulled my cart beside hers, stopped and reached across her cart and took the water from her and asked her where she wanted it. She pointed to the front, I set the water down, she said thanks, and I continued my hunting and gathering feeling good about helping someone.

This little act helped this lady with her chores, this little act helped make my chore of gathering the weekly food supplies a little less mundane, a little more rewarding, until I got to the paper goods section. There are entirely too many paper towel options and when faced with this overabundance of choice, I choose to freeze. This is where I generally mutter under my breath that I wish Marty were here making these choices.

This frustration passed and the good feeling of my saint-like behavior returned, until the crazy lady in the parking lot almost backed over me as I was returning my cart to the cart landing strip. Of course it was her fault, would I ever wander the parking lot of HEB with my head in the clouds? Maybe she wasn’t that crazy, maybe I’m not a saint.

Doing small things for others, the somewhat trite random act of kindness is good for the soul and a proverbial poke in the eye of all of the angst and discord around us. Marty was big on doing little things for almost anyone. She could not pass the random homeless guy standing on the street corner without giving them some money, the whole “least of these” thing kept hammering her. She actually made chicken noodle soup for sick people and I think it might have cured some lame folks down the street.

With all of the bile and vitriol, the hate, the bigotry, people trying to burn books, I still see, on a daily basis, people doing small good deeds for others. I see people hustle to get ahead of Marty in her wheelchair to help with doors, I see people reach down and pick up the towel she dropped as we pass by, I see the man offer to return the shopping cart for the older woman in the parking lot so she doesn’t have to walk in the heat, I see it every day and it makes me almost forget all of the nastiness that seems to pervade so much of our society, it literally makes me feel better.

Marty sees it too. I know she is positively affected by the people who take the time to touch her shoulder and bend over to her eye level. I know she is forever changed by the kind words, thoughts and deeds we see on an almost daily basis.

I suspect we all see these small good things. We just are moving too fast for them to register in our brain; sometimes they just don’t seem to hit all of the right neurons so we remember them. We really need to make it a habit of filing these random acts in our psyche and learn to recount them for other people to feel, hear and maybe, just maybe gain a little hope.

I know I’m not the only saint in HEB, heck I may not even be a saint, just don’t tell my Momma, she still thinks I am.

Friday, September 10, 2010

Would You Have a Stroke?

I wake up most mornings, check on Marty, eat a bit of breakfast and then hit the treadmill. As much as I walk you would think I would be thin as a rail, it’s so sad, not even close, but I continue to walk. As part of the walking ritual I watch DVDs from series television shows I have missed over the years. It’s a great way to watch some pretty good shows like The Wire, Rome, Deadwood, MI-5, X-Files and on and on and on. I’ve walked and watched a lot over the last four years.

Most recently I’ve been watching a show called Six Feet Under. It’s kind of a downer really, in a funny sort of way, normal people living normal lives in a funeral home. On a recent episode one of the characters was looking at their somewhat screwed up life retrospectively and mused that they wouldn’t really change anything, because if you changed one thing it would change everything and they didn’t want to change everything.

It got my head to buzzing just a little so naturally I had to bring Marty in and get her head buzzing with me. I still love to have philosophical discussions with Marty. The conversations are more stilted and I have to lead and guide them and be more patient than is sometimes comfortable for me, but I like talking with Marty a lot.

Marty really mulls over some of my more esoteric questions and she almost always has a thought or an opinion, you simply have to wait for the words to take the long way around from her brain to her mouth; the shortcut that used to plague her and cause spontaneous verbal assaults is no longer open for her, the strokes closed the road.

I’ve never been one of those to say I would change nothing about the way I have lived my life. I’m sorry to say I have regrets, there are things I would do differently, hopefully better. But, the question is, would you make those changes if you knew it would change other parts of your life you really liked, would you then fix the regret? Would you choose to repair some damage you have done if you knew for a fact you would lose things you have gained?

I asked darling Marty, “You know how much you are loved?”

She says, “A lot.”

“You know,” I continued, “It’s the only up-side to the strokes, you have been able to see how much people care for you, right?”


This has always been a big deal for Marty. So often in life she struggled with feeling lovable, feeling loved. She always knew how smart she was, she knew she could be funny and even captivating with her stories, she saw the trappings of her success, she just never felt any real assurance of the clearly delineated self-sacrificing love she now sees and recognizes every day.

Now the real question, I asked Marty, “Is it worth it, is knowing you are loved, valued and cherished so much by your family worth what you have given up? Would you change anything?”

I waited, I watched, I fidgeted. I asked her, “Are you thinking, or do you need me to ask the question again?”

“Thinking,” she says.

I really assumed there would be no question or hesitation on her part. I assumed she would say she would rather have never had the strokes. I assumed she would choose a different path for herself and choose her normal cognition and health over the assurance of love.

She never really answered. She kind of mulled, waffled, answered both ways and gave every indication she wasn’t going to give a straight answer. I know she was conflicted, I know how important her mind was to her and how much she truly misses the ability to communicate smartly and quickly. I also know how much it means to her to see our love for her played out in so many different ways.

I recognized it was time to move away from our postulating and on to our music or a game of Strike a Match. Marty instinctively knows the best way to answer a theoretical question, a question that changes nothing, is sometimes you just don’t answer it.

Wednesday, September 8, 2010

It's Really Been 39 Years

In about two weeks I am heading to the hinter lands of west Texas for my high school reunion celebrating 39 years since graduation from dear old Colorado City High. I know 39 years has absolutely no symmetry to it; nothing like 25, 30 or 40 years. I think the oddity of it fits my somewhat out of sync graduating class and people of our particular birth year where everything we did and experienced was just a tick off center.

Marty and I were both born in ’54, dead in the middle of the baby boomer generation. We graduated from different Texas high schools in 1972 and we have always believed our classes were a kind of bridge between eras.

We were too young to be a real part of the upheaval of the 60’s, the civil rights demonstrations, the antiwar protests, Chicago, Watts and Woodstock. On the other hand we were much too close to the 60’s and we wanted to be counter culture enough to eschew the yuppie, disco crowd (thank God). It seems we don’t really have an era, unless it would be the era of being on the cusp.

Musically we bridged the psychedelic era, progressive country and bubble gum. The Beatles had broken up, Waylon and Willie were just being found, the Archies were the leaders of bubble gum and the Bee Gees were just way too, well they were just way too. In 1972 we had “American Pie”, “Nights in White Satin”, “Ben” and “Puppy Love”. No wonder we are all a bit schizophrenic.

Politically we were awash in sea of chaos and confusion. Our older brothers and sisters railed against the war and the draft or railed against those railing against it. In 1973, our first year in college, President Richard M Nixon stopped the draft. We lost that particular freak flag before we could really fly it. In that my lottery number was 24 I was thrilled to lose this marching issue. I’m embarrassed to say I cast my first presidential ballot in a very self-serving manner and helped elect a felon.

In spite of our somewhat confused era, or lack thereof, our classes soldiered on through life. We participated in and were the recipients of great change morally and socially. Women gained, freedom of expression expanded, lives became more chaotic, jobs offered less security and nothing was static.

Our era, that thing that defines you as a special generation, is simply the era of change, an era of radical, amazing, frightening change. Maybe that’s why having reunions every so often instead of 10 years suits my class just fine because we have always been a bit off center. I know I look forward to the every so often years to reconnect with those who have this era in common.

For me this reunion will be different because of Marty. She always enjoyed going to my class reunions. Over the years she become acquainted with many parts of my history and really enjoyed these trips treating them as a type of psychological archeology. A lot of my old class mates know Marty and have enjoyed her quick wit, humor and ability to keep me ever so humble.

Alas, I don’t think she will make this reunion. It would be just too hard for her and for me too. It makes me a little sad and a lot nervous to be facing all of those memories alone. When you have been together as long as we have, being alone, going solo, makes you feel like a part of you is missing, like maybe you aren’t completely dressed or your zipper is constantly down, you just feel a little out-of-sync, a tick off center; sounds about right for a 39 year reunion.

Tuesday, August 24, 2010

The 23rd of August

Yesterday was Marty’s birthday, the 56th, the fifth birthday since her first stroke, the fourth since her 2nd. For Marty, every day is a victory, every birthday is cause for a celebration of living; for me this birthday is a milestone therefore a time for an historical retrospective.

Five years ago on the 23rd of August we had a birthday party celebrating Marty’s recovery from the cerebral aneurysm. While she had clearly lost part of herself to the brain injury she had made a remarkable recovery. We celebrated with friends, music, singing and tears. Somewhere along the line I had become a real crier. Marty was clearly different and cognitively diminished but we looked to the future with hope for recovery and I felt secure in beginning a search for my future.

Four years ago on the 23rd of August we looked back on the past year envious of what had been. What we lost with the 2nd stroke during those 365 days was huge. Marty was no longer able to walk or care for herself in any way. She rarely talked and never really initiated any conversation. She used very simple sign language simply to say yes or no. This birthday was a milestone, but it was devoid of hope and I was more focused on Marty dying than her living.

Three years ago on the 23rd of August we had marked time and seen some improvement. Marty was not as sick, but she was still ill and weak a good part of the time. We did some therapy, we learned to watch for signs of illness and we established a remarkable rapport with Marty’s doctor and his staff. We had finally found excellent caregivers and we had learned to live and work in tandem with them. Death did not seem as close. We again celebrated Marty’s life, not just her birth, but her continued life with family and close friends.

Two years ago on the 23rd of August we had the celebration at our home with family. For Marty’s birthday we had a photographer come and take family portraits. This photograph now hangs over the mantle in our lake house as my personal ode to narcissism. It reminds me of something the Cartwrights of the Ponderosa would have had on their wall.

The year was marked by another very close call in November and for the first time our doctor, Great and Wise, asked me the question, “Do you know what her wishes are?” Not a question you want to be asked, but it is a question where you better have already talked about your answer with people who care. I hated the answer.

We, meaning me, had learned several critical procedures over the previous year. I learned how to better care for Marty; the chief lesson, how to deep suction. It’s an awful procedure but one that allows Marty to fight infection better. While we spent some time in the hospital, we had finally found a rhythm to our life, I was finally seeing how we could live and enjoy our life instead of waiting for an inevitable death.

Last year on the 23rd of August we had a party at our new lake house. It was a great gathering with family, friends, a pregnant daughter-in-law and an improving and reasonably healthy Marty. That year we lost Andrea, but added Erica to our caregiver stable of Nikkie and Renae and we found great comfort and peace in strong, reliable women helping us through our life. These three women are one of the biggest improvements in our lives. We had to kiss a lot of frogs to find them…..actually, maybe they found us.

This August 23rd was a scaled down day-of party. Being the domestic god that I am I did cook the requested chicken fried steak, mashed potatoes and cream gravy. The CFS was great, the potatoes were perfect, the gravy was thick, heavy and not really white, I’m still in training. We will have a bigger birthday bash with the whole fam over Labor day. We have a raft of birthdays in August and September; apparently our family likes to procreate in the winter months.

Over the past 12 months I have continued to learn, I have continued to become a better caregiver. We have all gotten better. We experienced one devastating seizure and equally devastating broken arm which drove us to new meds and new methods of care for Marty. We have learned new things about infections and maybe, just maybe have turned a corner on the frequency of said infections because for the first time ever we have gone three months, a quarter of the year, antibiotic free. That’s a really, really good thing.

Our progress over the last five years has been nothing short of amazing, but then you have to know I married an amazing woman. We have gone through the proverbial peaks and valleys of life and I suspect we have more hell and heaven in our future as we continue our journey. I think when we look back, when we look at our history, when we see the tracks we have made we gain perspective on that journey. As I look back and see how Marty has gone from a woman barely able to talk and constantly under a death watch to my wife who clearly sees, feels and enjoys significant parts of her life I can see how amazing our journey has been. I have moved to hopeful.

Friday, August 20, 2010

Advice From My Brain Damaged Wife

I've said it before, Marty says it again, I hover. It’s just part of who I am, I have a problem, I admit it, my name is Marty’sHusband and I hover.

Before Marty's strokes I was a hoverer. When we had an argument, when things were off with us just a bit, I would, in her words, figuratively”take her pulse" or "check her temperature" to the point of driving her a little crazy. I would circle her, watch her every move and pretty much drive her crazy trying to get her temperature and the temperature of the room. I guess all of the practice of figuratively taking vitals helped me in the transition of literally taking her vitals.

I still do the same thing, I still hover, I still buzz around Marty like a big gnat with a beard watching for signs; now I simply check for different things. But, just like our little dachshund, Maggie, who is always up my butt, driving me crazy, I'm always up Marty's derriere, just watching, looking, checking to see if everything is alright; of course I drive her a tad bit nuts.

One of our caregivers, Nikkie, has a 14 year old daughter who has been having more than her share of physical problems, not the least of which are severe seizures. I've seen Marty have a couple of seizures, it's not for the faint of heart, and in fact it's one of the most frightening, disconcerting events I have ever seen. Xaveria, Nikkie's daughter has had several episodes of multiple seizures. I understand the stress Nikkie feels.

At lunch the other day Nikkie confessed her own hovering proclivities; it’s in her paternal DNA. Who can really blame her for excessively watching over her baby girl, who can blame any of us who hover incessantly?

I asked Marty if she thought I still hovered too much, thinking maybe I have done better with her recent spate of good and stable health. She of course said, "Yes, you do, all the time." One of the things about Marty that has not changed is you should never ask her a question if you are afraid of the answer, because she can be unfailingly blunt,

I looked at her and stumbled through my standard excuses of why I was a hoverer and how vital my hovering was to her well-being. I asked her if it kind of drove her a little bit, a tiny bit, nuts. She looked at me with her soft blue eyes, swallowed, took a deep breath, sighed, and said, "It drives me a lot nuts." I would hate for her to sugar coat it for me.

It’s why I fell in love with her, the frankness, and it never fails to amaze me. I said, "I just can't help it. I worry, I’m a worrier. I want to make sure you are all right. How do I quit that stuff, how do I quit hovering?"

Marty looked at me, stifled her laughter just a bit, grinned, and with all seriousness and wisdom said, "Just take two steps back."

Okay, from the mouths of the brain injured comes great wisdom. “Just take two steps back,” is great advice, but like so many things, easy to say, hard to do, to take two steps back.

“Two steps back,” is great advice for Nikkie, the caring mother, to keep from smothering her daughter, when she can. It’s a wonderful thought for me to keep from being the nagging husband to Marty. Its even great advice for those with Obama derangement syndrome, and it’s a perfect admonishment for those who are comfortable with discarding our 1st amendment to the constitution. In short, its pitch perfect for all of us who occasionally take ourselves, our tasks and our ideas too seriously.

Just listen to Marty and take two steps back and see if maybe, just maybe, all of the hovering and obsessing is actually helping; take two steps back and maybe your perspective will change, maybe it will be just a bit clearer for you. Sometimes seeing things from a distance really helps.

Thursday, August 12, 2010

The Marty Test

Before Marty's strokes, before she was relegated to a wheelchair, before her ability to communicate was burned away by the brain injury from the strokes I never really paid attention to people in wheelchairs. I was like most of the rest of the world, I saw someone in a wheelchair, I saw someone debilitated in some capacity, I saw someone who was different, and I looked past them. I wasn't necessarily afraid, I was unnecessarily uncomfortable.

I see it a lot now, almost exclusively with adults, a lot with young adults. It's a bit scary for them to see Marty, to see someone like her who can't move for themselves, who can't really take care of themselves, we are completely dependent on others. Some do as I did and look past her, some avert their eyes, the very young often stare because the wheelchair, the broken body is new to them, it's foreign to them.

I look to see how people react to Marty in her new condition. It's become something of a test, the Marty test. It's funny and a little bit sad the people who flunk the test. It's not a hard test, it's really pretty easy, you simply have to recognize that it's Marty, be able to engage with her on some level and touch her; so simple yet so hard for some. I do understand, though I no longer have sympathy for the failure to reach out and touch the least of us.

I've seen how a few, just a small number of her old friends, have been washed away by the discomfort. I'm not sure if it's the change in Marty from gregarious, engaging and physical to her new quiet, internal reflective self. I'm not sure if they think the stroke is communicable and they are afraid they will suddenly be "stroked". I suspect it is a little of both. I'm not sure I would act much differently if they were the ones in the wheelchair and I was one who just simply didn't understand the beauty of touching Marty as she is now.

Lyle, Erin's boy, and Sammy and Luke, family friends, always pass the Marty test with flying colors. Lyle is an adult who had to pass the test to move into our family, the other two are children who simply revel in the company of others. Since Lyle first came into our home he was never afraid to talk to Marty directly, to touch Marty, to kiss her cheek when offered. Lyle laughs with Marty, he jokes with Marty, he treats Marty as his prospective mother-in-law, and he passes the test easily. His comfort with Marty is part of who he is.

Luke and Sammy are kids. I’m not sure if it’s because their mother is a physician or simply because they are kids but they talk to Marty, they ask Marty questions and are thrilled when she answers them. The comfort they both have with Marty, and I suspect anyone like Marty, is what gives them the passing grade, they aren’t afraid, they aren’t restrained, they treat Marty like a regular person which is all that’s really required.

Here’s the truth. Marty is different. She is different in many ways from what she was; she is different in many ways from the norm, whatever that is. What so many overlook, what so many don’t understand is that Marty still feels, she still is very intuitive, she still knows who is comfortable around her, she still listens and understands clearly, she just doesn’t carry the conversation anymore. I don’t think that kind of thing is that important to her any longer.

The test, oh, there really isn’t one. Maybe there should be. Really it’s just a way of saying and recognizing some people who have difficulty relating to people who are different. I can tell you, if there was test, all you would need to do to pass is treat Marty like a real human being, like the person she has always been, and then just maybe touch her a little bit, she likes that, so do I.

Thursday, August 5, 2010

A Wedding is Coming

My baby girl is getting married. The little girl who captured my heart 27 years ago when she was born with the roundest head I had ever seen. The little girl who I rocked to sleep, who often snuck into our bedroom to sleep on the floor next to her mother, who learned to snow ski between my legs and cried all the way down the mountain in a blizzard, who could be soft and cuddly or rough and tumble, who could throw a softball and catch a bass, my baby daughter who is somehow a child of the sixties is marrying some guy named Lyle. Oh, shit!

It's not a big surprise, in fact, it's time, and even I accept that it's time. Lyle is a good guy who has passed the Marty test, Erin is special, they are a match, a good match, it’s very clear they love each other.

I don't have the first clue about weddings and I’m in over my head. I miss Marty. I know all about marriage and I'm a veritable font of unwanted, unneeded and unheeded advice about marriage. I know zero about the social graces and rules and societal laws which apply to this process on which we are embarking. That's where Marty would have been my guide.

When Marty and I got married 35 years ago my job was to keep Marty from having a hit put out on her mom and to be where I was assigned when I was told. When Matt, our eldest got married, my job was simply don't make things harder and get out of the way. Somehow this seems like it’s going to be more complicated for the father of the bride.

Marty was one of the world's great idea people. She would have been perfect in some very esoteric think tank. Her innate ability to see things others don't see and to capture different perspectives were an incredible complement to my more basic view of, well, everything. Sometimes she made the simple complicated and the easy hard, but she never settled and she would have been dead smack in the middle of planning this wedding and she would have found unique ways to craft every minute of the event. It was an integral part of her nature that the strokes took away from all of us.

That's just one part my wife I miss. I know the kids often miss the consummate "mom" part of Marty and I know Erin feels this deeply. It's when we are faced with milestones like a wedding or a baptism or a birth that I miss the old Marty the most. The feeling of my loss, the knowledge of her loss, the feeling of being on an island alone is sharpest and most poignant when we are faced with touchstone moments in our life. It's when I am most reminded of what has changed, what is gone forever and how different life is for us.

As happy as Erin is about this union she feels a very real, almost tactile sense of loss. There are times Erin misses her old mother. She doesn't miss the love, because the love is still there and obvious in the way Marty touches her and looks at her; Erin simply misses the mothering Marty did so well, both of our kids do. I try, I truly try and remember how Marty would have handled a situation or what she might have said, but I'm just a big ol' hairy, occasionally impatient Dad, it's just not the same, I don’t have the same skills. They are stuck with a good father but a poor substitute for a wise and sage mom.

We all realize we are lucky to have Marty in any capacity to participate, to help choose, to simply be there for the wedding. We all appreciate and recognize the good and great gifts Marty still brings to all of our lives. Those things are very real; you just can't forget what was.

The best part of what will transpire over the next months in planning this little soiree is Marty and Erin won't be fighting as many mothers and daughters do while planning a wedding. The sad part is that Marty and Erin won't be fighting as many mothers and daughters do while planning a wedding.

The plan for now is to involve Marty in all elements that seem reasonable and in ways she tells us she wants to help. She wants to be involved, she wants to help choose a dress, and she will be great at helping with the cake (me too), we simply want to keep her engaged to the extent it feels good for her and for Erin. She has already helped me go through the first pass of a guest list and she has started planning in her own mind what she wants to wear as the Mother of the Bride.

For me, I know, I get it, Father of the Bride's main job is say, "okay, that's sounds great." I got that down, now I just need someone to help me with where to stand, and Marty has already offered to tell me where to go…..

Saturday, July 31, 2010

Stings and Arrows of Good Fortune

Clean phlegm and pee, it's a dream, it's real, it's real cool. Marty has been clean on both accounts for roughly two months now, for two months she has been antibiotic free, she has been infection free. It’s a world record for Marty. But, please remember the drill, you must now find wood and knock, three times and spit if it suits you.

Marty is fine, Marty's Husband is equally fine, maybe more so. When Marty is good, Great and Wise, UberNurse, and other associated folks are finer than frog hair. It's a fine time to be in Marty's house. I gave her injections of Rochephin for an upper respiratory thing in May; last spring (makes it sound longer). We are drug free for the longest period of time since 2006. These are good things that deserve celebration.

We are still checking, we are still watchful, we are still appropriately paranoid, but we are enjoying not worrying, we are reveling in the relative good health which most of us take for granted. The old saw of "at least I've got my health" is more than an old saw, its truth.

Marty's health, when it's good, makes me feel good. Every morning when I first swing my legs out of bed the first thing to enter my groggy, bed head is Marty. When we have extended periods of feeling good I don't start with a rush of adrenalin every day, I don't dread going to her room to check her vitals, I don't wake worried that the worst is upon us. The sense of relief is physical and real.

Marty is clearly more of herself than ever, every day through her comments, her requests, her one-word orders and directives I see more and more of my wife.

Me, probing for short term memory, "Marty, do you remember what we had for lunch?"

Marty, recognizing the folly in my probing, "Yes."

Me, "Well, what was it?"

Marty, looking at her caregiver and companion, mulling over her smart-ass answer, and then turning to me, smiling, "It's a secret."

You see, she didn't remember, she knows she didn't remember, she doesn't care she didn't remember and her effort was not in remembering it was in zinging me. It's like home, it’s like old times, it’s the best part of nostalgia.

Erica, companion and caregiver and promoter of culinary sin, "I know, I shouldn't have brought the chips but I was in a hurry and thought you guys would like them."

Me, the generous, carb addicted boss, walking out of Marty's room leaving Marty and Erica alone, "It's okay, it's a test for me to leave them alone."

Marty, quietly to Erica, "I want some of the chips, would you get me some please?"

Me, of the hard of hearing, except when people are whispering behind my back, "What, what was that, what did she say?” I asked looking at Erica.

Erica smiles, looks at Marty, Marty looks at her then over at me, thinks for just a tick of the clock and says, "I told her I didn't need any of those chips, so please don't bring me any."

Liar, Marty, my wife, liar, liar, pants on fire.

How could one ever miss the little white lies, the little arrows we all shoot at our loved ones? I don't know, but I do, and the glory of these last two months is on occasion I get to remember and feel those little stings, those little stings that remind me of who I married. Its okay, they keep you awake, aware and in love.

Knock on that wood people.

Thursday, July 29, 2010

Death is No Way to Learn

Marty’s father died suddenly after routine surgery, six years ago. He died old enough to have lived a long, good life. He died old enough to see his two children’s successes and failures, he died old enough to see his grandchildren get married, he died old enough to see a lot of the world and know people. He died young enough for his family to see a full church at his funeral and to hear how much he was loved and admired by so many.

I remember sitting in the church for his funeral and I was struck by the outpouring of admiration, real affection and love for this rather gruff, self made agricultural entrepreneur. I heard countless tales about what a good man Arty was and how he had selflessly helped so many. I knew how much I admired him, I knew how much his family loved him, and I heard how his friends held him in high esteem. I wonder if Arty ever really knew how people truly felt about him. I wonder if he knew how much I cared about him.

Do any of us really know how much we are loved? We may think we do, but somehow we always manage to question our worthiness of this love and respect. Is that just me, or is that just Marty?

Confidence in being loved, assurance there are people in our lives who will steadfastly stand beside us and love us through our pain, is hard for some of us to grasp and believe. We rarely get this type of genuine affirmation in our daily life, we rarely give this type of affirmation until we or someone else dies, and then it’s just a tad bit too late.

I think Marty knows, I think Marty knows she is loved. I know she has seen it and felt it from many people. The cost of finding the love, the strokes, is way too high, but she is one of the fortunate who knows they are truly valued.

She didn’t always know; she didn’t always feel that lovable or deserving of love and affection. She didn’t always understand how much the people around her cared about her. She does now and she didn’t have to die to see it, just almost.

Every day Marty is cared for by three very special caregivers who always treat her with respect and admiration. She gets her cheek kissed every time she goes and sees her Doctor, the guy we lovingly call Great and Wise. The nurses and staff treat her like a minor celebrity and someone they genuinely love and respect. She is recognized at restaurants we frequent, movies we regularly attend and is always greeted with hugs and affirmation every time we manage to make it to our church. Marty is touched and loved in ways few experience, and I am sure she recognizes it.

Marty has seen the love of her family and friends, she has been the recipient of the love and care of countless medical professionals and she has earned the admiration of most that come in contact with her. She has been able to see her adult children care for her in ways parents rarely, if ever, see of their progeny, and she has lived to see me love and support her in ways neither of us thought I would be able to do. Knowing is one of the few gifts of the strokes and it comes at a too steep price.

It seems such a simple thing, telling the people we love and admire, that we love and admire them. We are not very adept at having sincere moments with each other. It’s not a small thing, we all want, we all need to hear it, we all need to feel it and we all need to know that the feelings are real, that we are loved. The sincerity of the moment does not require a funeral, it really doesn’t even require a catastrophic illness; these events just help push real feelings to the top. Marty knows that because she now gets to see how people really feel about her, she gets to see they love her, there should have been a better way.