Thursday, May 27, 2010

The dance of a lifetime

It has been hard to write this now. Harder than I ever thought it would be. Even two years later, the mere thought that I am without him is crushing. There is not the anger that I would have imagined, only an incredible sense of helplessness. An incredible sense of loss, that nothing can fill. A deep void, where he once inhabited is now so empty.

I have added this paragraph, after I wrote the post below, because I can't believe that he is not here. I live with my memories each day. I get through each day knowing that he told me that he would be with me, beside me, no matter where he was. That the woman he loved like a daughter would be OK, that she would be my strength. The man she married would stand strong. Yes, I know that. I feel that. Yet.....knowing he is not within this realm, knowing that I can't ever hold him again, never see him smile with tenderness, never touch his hand again, is more than I can stand. All the well meaning advice, all the caring words do not take away this gaping hole in my heart. To understand this in its entirety is to have lived it, and it is something I do not want anyone to have to go through. Live your life with love.

I watch my daughter, rescuing animals, her eyes filled with tears at their pain, and I know what he meant. A cat, lost, found its way to her home. Her love, her tenderness with this pitiful little thing, filled my heart with such gratitude. She didn't question, she sought care for it, knowing she could not keep it, make it well, knowing it was so very sick. Her determination and her strength finds its way into my soul. This is why I go on....for those who need me still.

Today, I try to hold back the tears. They are stuck somewhere between my heart, my throat and my eyes. I am trying not to cry. Just as I do not want to see my daughter cry, my mother should not be burdened with my tears and grief. I hold it in. Later, when I am alone, holding his picture, smelling his aftershave, I will allow myself the luxury of those tears. I want them to heal this ache, to wash away the sadness. Like the salt water of the ocean, they burn.      

It wasn't always a waltz, but it was one hell of a tango! Eugene had a joy for life that was unsuppressable. He was from Michigan, originally, and often, on weekends, we would go to visit his dad, to take care of him in his later years, and visit with friends, while we were there. These were the friends who he had gone to school with, golfed with, and had kept in touch through all these years. He really loved them. In a guy way. There never seemed to be enough time. With so many to see, so many to try catch up with, it was always a whirlwind of activity. He would help his dad out with the chores that now were too hard for him, whether it was to cut a tree or mow the lawn, he would be happy to help. When his dad needed a tree trimmed, he climbed the massive tree effortlessly. Hanging in the branches, he would call down to me, knowing I was afraid of him falling, "Come on up, the view is great from here." He'd been in the construction trade before he met me, before he had gotten sick for the first time, and for him, climbing a roof was a no brainer. Oh, he banged his thumb enough times, he always seemed to want to get things done, now. It was a private joke, that when he worked, he concentrated so hard, his thumb would turn blue.

Then we would do the "Michigan thing." as he called it. Nights out to Greektown, White castle sliders, coneys at three in the morning, and Middle Eastern food in Dearborn. How many nights did we sit on Jim and Chris's enclosed porch, talking and laughing into the wee hours? How many moments with friends at dinner, or cocktails at some new place did we have that meant the world to us? So many, it's hard to think about today. The hole in my heart is still tender, even after all this time. Memories are sweet, but they can make me stop breathing with the sheer pain of his loss.

The guys would golf, and we would wait. And wait. They would inevitably be delayed. Laughing and being suitably remorseful, they would come home a little tipsy, for dinner, while Chris and I shook our heads at their antics. In Michigan, he was like a kid again. The annual golf outing that he attended was one of his favorite yearly trips. In touch with old friends he hadn't seen in years, he spent a weekend playing golf and renewing old acquaintances, doing whatever it is that guys do when they get together after not seeing each other in a while in many cases. He really enjoyed himself. On the way home, it was always the time to talk, about his mom, the memories of his childhood, his youth, and to tell me about his life before me. About the friends he had made along the way, and why each one was a special person to him. He never shied away from his feelings, nor his appreciation for his friends and all that they had meant to him. He was grateful he had a chance to be with friends that meant so much to him.

When we traveled, it didn't matter how long it took to get there. I often wanted to find some small, out of the way restaurant I had read about, in some obscure town on the way to our destination. It was before GPS systems, and I would navigate as he drove. Ooops, an hour out of our way, winding roads, dead end roads, turn arounds; we got there, only to find the barbecue joint was closed, or the great little seafood place was out of business. Sunday in the South! He wasn't angry, this would be just another adventure. We would find something else along the way, and it would be just as good.

We never went anywhere without a cooler.Of course not. What if we found great food somewhere and had to bring it back with us? He had the car packed with a cooler and water, sometimes even a change of clothes, and the adventure began. Vidalia onions tasted better if they were bought in Vidalia, Georgia, right?

We had planned at some point to take a road trip across the country, stopping at places he wanted to show me, places he had seen on his travels before he met me. The places that now he wanted to share with me, the places he had told the stories about. Oh we had plans! Lots of them. We would grow old together, and stop and smell the roses along the way. Walk on the beach. Watch thunderstorms over the ocean. It would be glorious. There was never a doubt in his mind back then that anything would so rudely take his hopes and dreams. And we would always hold on to each other. We both knew, together we were two parts of a whole. We were better together. We were stronger together. There was nothing we couldn't take on...together. He always told me that. He always reminded me of what we had done, and how together, we could take on the world and win. I knew it was true. I believed him. Like the James Bond song from one of the films, we were on "An all time high." One of our favorite songs.

When the illness began to take its toll, when the obvious was upon us, it was the hardest thing we had ever done. Even the illness he had borne all those years ago did not take from him his will to fight. His will to live. Now it seemed that he had come to a point where he had never been before, and I had to make him believe, again, that we could to this, we could get through this together. He had to believe!!!!!! For a brief time, he rallied. At first he fought the doctor and the Nurse Practitioner. Oh he fought. He wasn't ready for dialysis yet. He was sick. The nausea, the weakness, the overwhelming sickness became a part of his daily life. Still, he went outside to work in the garden, coming inside to lie down briefly, before going back out. He was becoming increasingly short tempered, his frustration growing with each symptom. He would not succumb to this, yet it was not up to him. The illness has a mind of its own. Progression was something he had no control over. He would need to begin Hemodialysis, soon, and emotionally, he was not going to accept the news. I didn't want to be the one to give him bad news. When the call inevitably came, the news was bad. Friday morning, the words reverberated in my head. Now. Today. His blood work had proven that he had no more time to waste. He needed to be on dialysis. Now. He had already had the surgery, inserting the Peritoneal Catheter into his abdomen, and now he was waiting to heal, to begin the CAPD, which would cleanse him of the toxins his body was no longer able to rid itself of.  No, not on Hemodialysis. Hell no. He was fine. "I can wait." He was stubborn in his refusal. Increasingly, I was afraid. The complications of his kidney failure could kill him.

"Eugene, you need to get a shunt placed into your neck. Today. At twelve-thirty, the surgeon will be waiting for you." It was his nurse practitioner on the phone. I had spoken with her briefly, when I answered the phone, and I knew what she would be saying to him. How would he react? Would he fight this news? She was a woman who was kind and compassionate, her knowledge and professionalism made him trust her; even more, he liked and respected her. I saw his features harden. His jaw clenched. His answer was terse. "OK, we'll be there." Three hours later, into the torrent of a thunder storm, we were at home. I stared at my sleeping husband, his face pale against the burgundy of his leather chair, the white bandage covering his neck, the hole in his artery where it had been inserted, visible to my minds eye, and I cried. Quietly, without sound, I cried. It would be the last time I would cry for the next three years. I would not allow myself the luxury of tears, because I knew then, if I started to cry, I would never stop.

His face pale and drawn, his knowledge of the impending dialysis treatment transformed the man I knew into someone who withdrew into his own world for the next few hours. We did not speak. We didn't need to. We both knew that this was inevitable. For now, this was the elephant in the room, and we could not ignore it. I would find a way, I thought, to keep this to a minimum. We would find another kidney. Medicine was amazing. Medicine had advanced so very far! Hope, Faith and love would get us through.  

How was I to know to know how very wrong I was.......     



Saturday, May 22, 2010

The Days of love and laughter, hope and prayer

I don't remember much of the days that followed his death, nor the year that came after. I was on auto pilot and lived (can I really call it living?) each day with no memory of the day before. All I knew was that he was gone. I didn't sleep, I couldn't eat, and the simplest of tasks would rock my world. I know that those who have lost loved ones know what I am talking about. Shopping at the grocery store, looking at things I thought I should buy and forgetting he wasn't there to eat them. How many times did I walk into the store, only to walk out to my car minutes later, so no one would see my cry? How many times did I pick up the cell phone to call him on my way back from my mom's house, to ask what he wanted me to pick up on the way home, only to be torn to bits knowing he wasn't going to answer the phone? I would call his phone and listen to his voice, over and over, and finally, I recorded it so it would never be erased from my mind. The sound of his simple message, "This is Gene, please leave a message." would leave me helpless, holding on to his picture, I didn't know how to make this primeval ache, this silent scream, go away. Listening to the music he had recorded for me, I could remember what it was that made it special to him, why he had recorded it for me, and how he would surprise me by filling my CD player full of new songs. But I could not remember what I was supposed to be doing at any given moment.

Intellectually, I knew he was gone. Gone...as in died. Not in another city, or country. Completely and with such finality, he was forever gone. In my heart, I would expect him to walk through the door at any second. I would awaken from a restless sleep, (the days and nights no longer had any meaning) I would fall asleep for mere minutes, not hours, and wake thinking he was there. Not knowing what else to do, I got into the car, and drove, so I wouldn't be at home alone without him. And I remember thinking that this was the most absurd escape I could think of? To drive around in the predawn hours because I was afraid to wake and find him gone? The house would be empty anyway when I came home, his shoes near the door, his jacket hanging on the hook. He was gone!!!!!! All I could think of was how true the following poem was. I did not want to be anywhere but where he was.


Funeral Blues by W.H Auden


Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,

Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.

Let aeroplanes circle moaning overhead
Scribbling on the sky the message He is Dead.

Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.

He was my North, my South, my East and West,
My working week and my Sunday rest,

My noon, my midnight, my talk, my song;
I thought that love would last forever: I was wrong.

The stars are not wanted now; put out every one,
Pack up the moon and dismantle the sun,

Pour away the ocean and sweep up the woods;
For nothing now can ever come to any good.

I wanted to lock the doors, shut the blinds, and never go outside again.

There were papers to go through, things to be done, my mind was blank. I could only play back his illness and his death. They say there are stages if grief, but I was numb. Shock? Realization? I have no clue. All I know is that I remember wishing the sun would stop shining, and recalled the above poem I had heard in the movie "Four Weddings and a Funeral." We had watched it together, and we had both been a bit choked up. But that was a long time ago. Now I was living the words I had heard. Repeating them like a mantra. Each time I thought I was getting better at coping with his loss, something else would happen to knock me back down into the abyss, into the black reality that I was truly alone. Without him.

When did the symptoms really begin? I don't mean the infection he had fought. I mean the beginning of his kidney failure. He was golfing that summer, but he was tired. I noticed that each week brought new symptoms that he tried to hide. First, it was the overwhelming exhaustion, the headaches, the short bouts of nausea. His doctor visits were frequent, and as they tried to rescue his transplanted kidney with medications, all with their own side effects. But they were trying, and I was praying that something would work. His headaches grew worse, his aches were more pronounced. But he wasn't giving up. That summer, he would golf when he felt well, work in the garden, and help my mom at her house. It was a slow decline, but it was an obvious one. He no longer had the stamina, and the medications were taking their toll. On him, the side effects making him sick and irritable: on me, as I silently watched him sleep after a golf game, the usual hour long nap turning to three hours, trying to smooth his irritation, offer encouragement, and bite my tongue. The summer turned to fall, and he wanted to spend time in Florida during the winter, and I began to make plans. He was not yet on dialysis, and since he was not yet on the transplant list, my hope still ran high. Perhaps the sun and gulf air would make him well? Certainly he would not become any sicker if he was there. I was so convinced it would be OK.
This time we would spend two months in Florida, he would golf, I would walk the beach and wait for him to finish. We would visit friends and laugh and dance the way we once did. To some extent we did. Friends came to visit, we visited friends in other cities. He golfed, but each time, it seemed to sap his strength a little more. He loved the game. Now, when he was able to afford to play as much as he wanted, he didn't have the strength to walk the course as he once did. Often, we would go to watch the sunset over the gulf, and with his arms around me, he would stare wistfully at the gulf, and smile. "We'll move here someday. You can walk the beach as much as you want, and pick all the shells to bring home for your fish bowls." Did I see his eyes mist over? His voice was very soft as he spoke again. "We'll be two old people, walking hand in hand, into the sunset." It was a phrase he had used many times during our marriage, but this time, it sounded so full of hope, I felt my heart skip a beat. Something was wrong, but I couldn't put my finger on it. He had many good days, and just as many bad ones. I saw the changes, but said very little. I knew that he would have to go for blood work while we were there, and he went; each time hopeful that there would be a down turn in the creatinine. After each test, when he called in for the results, he was quiet. I didn't have to ask. I knew. The levels were rising. Soon, it would be time for dialysis. He could not go on this way for long, or he would die. I knew he would fight it, for as long as he could, but it was an inevitable fact.

On one of my trips back home, to care for my mother and aunt for several days, he drove me to the airport as usual. This time, instead of dropping me off, he stayed. We had a drink in the lounge and talked to other passengers. I thought he would go, so he would miss the traffic back to the condo, but he stayed. When my flight was announced, he walked me to the security gate, and held me, very tightly. "I love you. Have a safe flight." "I love you too, I'll be back soon, don't worry about me." I told him. I knew he worried that I never ate enough if he wasn't around, he worried I would get sick from the change of temperature. Suddenly, he took my face in his hands. "Remember this moment. I don't think I'm going to make it this time." He kissed me, and turned away. "What are you saying?" I asked. "Nothing. I don't know. Go ahead honey. Your flight is leaving." I turned, stunned at what he had said. I could not believe I had heard him utter those words, and the moment I landed, I called him. I was so tormented by those words, I couldn't get them out of my mind. "It's nothing. I just know that I won't get a kidney this time. I know she won't come forward. I need a transplant now. I just don't think I'm going to make it, and I want you to be prepared. You won't be able to save me this time babe." Oh my God! What had brought this on? I reassured him, I talked to him, I reminded him we had gone through far more serious medical traumas, and he had survived. "I just have a feeling. I shouldn't have said anything. I don't know what came over me. Don't worry. I'm not going anywhere soon. Hurry back." I didn't know what to do. I stayed and took care of what I had come to do, rushing back a day early. He seemed normal, but he didn't want to talk about it anymore. He made reservations for our yearly brunch at the Ritz Carlton, and was his old self again. We had met so many of the staff there, we were almost regulars. He was full of laughter and romance. We took pictures on the beach, and more than once, I felt a shiver of fear when I looked at him. What did he know that I didn't? Our friends came to visit, and he enjoyed the camaraderie. He was a gracious host, but his sense of the absurd was absolutely hysterical. We took our friend John, who was more like a brother to us, to see the alligators in the Everglades National Park, and I knew he just couldn't get in and out of the car constantly, it was too taxing. John and I were standing at the edge of a deep pond, admiring the two gators lying on the tree branches, when suddenly I spotted an alligator that seemed to have had his face painted. I began to take pictures, when we heard two very loud splashes. They were coming directly towards us. We weren't sure, should we run, or stay? Realizing we were pushing our luck, we ran for the car, and heard Eugene laughing loudly. "What's so funny? We could have been eaten by those huge monsters." I said. "You were safe." His face lit up with a mischievous grin. "Yep. You would have been the appetizer, John would have been the main course. But didn't you notice? I left the doors open for you two hunters. I could have been bitten by a poisonous snake. Instead, I saved your butts. I'm the hero!" We went to eat alligator tail and shrimp at a local restaurant, while my husband played the hero role to the hilt. Another page for the memory book.

John stayed for a week, and we would wait for Eugene to come home from his golf games, then wander around doing touristy things. More and more, I walked the beach alone, while Eugene and John would sit under the shade of an umbrella while I trudged for miles along the waters' edge. If I walked far enough, perhaps I would think of a solution. It was clear now, his strength was waning. Soon, it would be time. The dreaded time. For now, though, we would live and laugh as though nothing was wrong, as though tomorrow this would all be gone, just a bad dream, and he would be well again.

He dreaded the knowledge that our time in Florida was growing shorter. He knew that reality awaited him, our time of dreaming over. He took me out for Stone Crabs, making special reservations, a special table, a special celebration, he called it. The pianist was fabulous, and after dinner, we sat at the piano bar and he requested "Moon Dance." by Van Morrison. Then he took me by the hand and as in so many times past, we danced to our special song. The pianist spoke with us. "You are in love, the two of you! You have a rare thing, I hope you keep it forever." I could feel the tears prick my eyes. I thanked him for that moment. He would never know how special that love was, and what we were facing. But as he watched us dance, to yet another of Eugene's requests, he saw the infirmity in Eugene, he saw us in a very different light, and in a private aside, he asked me if my husband was ill. All I could do was nod. He promised me that he would keep us in his prayers. "The kind of love you have is rare. You don't see it all the time. Both of you revel in each other. I will never play that song again without thinking of you both." I never went back to that restaurant after Eugene died. I wanted to, but I just couldn't do it. I could never go back again and certainly not alone.


Why am I digressing from the rest of the story? Because in some small way, I would like to let you get to know my husband and the kind of man he was. To omit this, would be so very wrong. He was here, on this earth, he lived, he loved, he had his faults, his moments of impatience, but he was here. In the days and weeks to come, I hope to leave you with a sense of the kind of man he was; the impact he had on those around him, the people's lives he touched with his humour and his kindness, because this story is not just about his death, but also about his life, our life. His feet were planted in my earth for such a short time.

Sunday, May 16, 2010

Promises to keep: To breathe him in once more

Promises to keep: To breathe him in once more

To breathe him in once more

Sleeping in my twilight world, I can see him. His profile sharp and clear. I reach over, to touch his face.....but he's gone. I wander the house, touching things, remembering. Today I am crying. Tears, unbidden, slide down my cheeks. How do I stop this ache? How does life without him hold the same meaning? The same joy? It never will, and I resign myself to this fact, not with bitterness, but with resolve to honor his wishes.
I sit in the leather chair he sat in, it still holds his form somehow. I feel his arms around me, in some strange and secret way, I feel him there. I still don't believe he isn't coming back. Ever. What dimension will I find him in if I look hard enough? What place does he inhabit besides my broken heart? It isn't as if I can deny his death. I was there. I saw it all. For four long years I watched as he struggled between false hope and despair. I watched and waited, still hoping there would be a time for compassion and honesty, a time of unselfishness and giving. It was not to be.

He tried to be strong for me. He didn't want to go, not yet. It wasn't his time, but he knew finally, there would be no kidney. There would be no reprieve from the pain.  I did not know that the promises I made to him would haunt me until I began his story.

I want to breathe him in once more. I want to feel his arms around my waist, his hand in mine. I want to see him laugh again, to swing a golf club, to hug a friend.

I go outside and look at his trees. The fir trees now tower over the yard, giving shelter to the same birds that have built their nests in them, year after year. The Lindens he planted stand tall, soon there will be the heady fragrance of the flowers, the bees harvesting their sweetness, and I remember how much he loved this life.  Each day, when the mourning dove comes to sit and cry on my deck, I wonder does she cry for me? For us? When the blue jay screeches his anger, I wonder if it is my anger that he screams to the morning sky?  

I can't bring him back, but I can talk about it now, and pray that another life will not be lost because of falsehoods. My life has been irrevocably changed. Why?

I am grateful to the ones who DID come forward to try. I am grateful for the wonderful care and love he received, from the doctors and nurses, from friends who truly loved him and I am grateful that I had him in my life, even though his feet were not firmly planted in this earth, he was of another place.

Saturday, May 8, 2010

Why now?

It has been almost two years since he died. Why now? Why am I finally putting this story online for the world to see? Because it is time for the truth. Not the truth as I wish it were, but the truth as it is. No fiction, no semantics, just the plain hard facts. Until now, I felt that I needed to spare everyone's feelings, to "suck it up" as I was told by a former friend. I then had the good fortune to speak with a person who understood the process of loss and grieving. You mourn a loved one forever, but grief hits you in the heart like a bullet, it shatters you to the very core. It comes, without warning, at the smallest of moments, and you cannot control it.   

There will be those who will be angry that I am telling my husband's story publicly, because it is so much  easier to pretend it never happened.    There will no longer be any questions as to how he became ill, how he waited for a kidney transplant, and how he died. There will be no more denials, fabrications, and lies. The days of pretense are over.

I will put these first words on the page, because they continue to haunt me every day. They are like shards of glass in my heart, and the memory of that moment can never be erased.

"Ask them, ask them! There were so many of them, why couldn't one of them have given me a kidney? They knew it was only my family that could, she knew, they knew. Ask them.  Promise me?" And his tears flowed from those azure blue eyes, onto my cheeks, mingling with mine. He held me, tightly, as I kissed him, over and over, not knowing, not wanting to believe that he would soon be gone from this earth forever.

I will continue to use his words "Ask them." in these blog posts, because to this day, the answers have eluded me. The truth obscured.  One thing I pray is that those who read this blog will remember the small reminders I place within these words.  If it saves just one life, it will be a tribute to the man I love. He will not have died in vain.    

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