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.