Two Years and counting: My journey

[lilyjohn]

Two years and counting. My journey

I know there are many who like myself have recently lost the person who defined their life. I know only too well that feeling of having the world ripped from under you and the helplessness along with the desperation it causes. I also know that you feel like you will never know anything but that terrible pain that is ripping your insides apart.

I won't tell you that the pain will ever go away. I won't tell you that there won't be times when you want to just give up and die too. Those times will come. For many of you I'm sure it already has. I just want to tell you that it is doable. You can find a way to live with that hole in your life. It is not easy and often it is a very fragile thread that holds you together but it can be done. I'm hoping that some of my experiences may give you faith that things will get better. That life is still livable...

Four years ago I was at a turning point in my life. My children were grown and my grandchildren were growing up fast. I was still an important part of their lives but no longer one of the focal points of their lives. Still they were my whole life and it was hard to admit that their need for me wasn't as great. My marriage had never been the best. It was full of problems from the begining but I held on out of stuborness or desperation. I'm not sure witch. By the fall of 2000 I was facing 60 in a few years. I was also facing the fact that my marriage would never be fulfilling nor even peaceful. I saw nothing in the future but the same lonliness that had plagued me most of my life. I had no more dreams and was resolved to live the rest of my life just coping.. Not only had I lost my identitiy but much of my self respect. It was just too easy to go along with the prejudices around me than stand up for what I believed.

It was during that time while I was questioning when I had ever been happy and not stressed and was praying for a way to live the rest of my life with no more dreams that a dream turned my world upside down and changed my life forever..

I was trying to get the nerve to end my marriage of 40 years but I was afraid and felt that without my marriage I would be lost, a nobody in a world that I knew little about other than what was right around me. I also knew that if I ended my marriage that I would have to move back to my home state and leave my family behind. It was a decision that I just wasn't prepared to make. No matter how much was missing in my life how could I give it up and face a life with no one or nothing?

Then one night I dreamed about Johnny.. He was my first love. I had met him when I was just 15 and we had fallen immediately and deeply in love. Problem was he was 11 years older than me. Life and people conspired to seperate us and I moved on and married someone else. I had not seen nor spoken to him in over 40 years. I hadn't even heard about him in nearly 20 years.. Then out of no where I dreamed about him and couldn't get him off of my mind and soon realized that he had never really been out of my heart only buried very deep where I didn't have to face the pain of our seperation..

To make a long story a little shorter I searched for and found him.. I learned that on the night of my dream he had been overcome by fumes in his home and thought he was dying. He had prayed for God to not let him die alone with no one to love him. He asked for someone or something to make his life worth while. He was convinced that my dream was the answer to his prayer.

We talked on the phone everyday for a year. All during the time I was agonizing over my divorce and making one of the hardest decisons in my life he was there to support me. He never advised me to get a divorce in fact he made me really think and weigh what I would be giving up against what I would gain. He gave me support and made me feel like I deserved to be happy. In the long run once my decision was made we talked about our feelings for eachother and knew that they had always been buried somewhere deep inside of us..

I visited him twice but moved to California. I was trying to build a life for myself here and find a relationship with my family that was different but close, to somehow mend the problems that were caused by my leaving. They understood with their minds but in their hearts they were very hurt.. It was while in California trying to build a life and find a way to introduce Johnny as a part of my life that he got the word that there was a good possiblility that he had lung cancer. We no longer had the luxury of time. He needed me and I needed him. I dropped everything and went to Washington to start our life together and provide the care that he needed 43 years late.

I was with him only two days when I had to call 911 and have him taken to the hospital with pneumonia. Three days later he was diagnosed with lung cancer. I won't go into details about his diagnosis and the questions I have about it. I have talked about that before. I will say that even with him in the hospital for nearly 3 weeks our relationship was something that people commented on. They could not believe that not only were we not an old married couple but had only been together for a few days..

We moved from the hospital to an apartment that I sat up and furnished the best I could. His health steadily improved and we had the most amazing time of love and happiness that either of us had ever known. Things seemed to be perfect and his health was improving so rapidly that people were constantly commenting on it. Then one day a nurse made a fateful comment. He told Johnny that it didn't matter how good he was doing or how good he felt he would never be cured and would be on chemo for the rest of his life.. Johnny had convenced himself and everyone around him that he would be cured. As long as he believed that he improved. Once that hope was taken from him our lives became a nightmare of panic and anxiety attacks. I spent the last two months of our life together trying desperately to get help and never finding any.

When he died my world ended.. We lacked one day having 5 months together. Out of that 5 months nearly a month and a half was spent with him in the hospital. The first 3 weeks and the last two weeks. Still that was the happiest months of either of our lives. Then he was gone and I didn't know where to turn. I had nothing to hold on to. I have never known such pain or agony in my life.. I had no purpose for living and no desire for anything that life had left for me. I was adrift in a world that had become hostile to me..

I was also in a place that I had only lived for a few short months. I was alone with no family and no friends. I had his family but my relationship with them was shaky because I blamed them for much of the pain in his life. They had not been there when we needed them even more important they had not been there when he needed them before I got there. I had no more job and when I did finally start trying to find one nothing worked out. I would all but be told I had the job and a few days later get a letter saying that I wasn't qualified. I began to feel that because I was asking questions and filing complaints about Johnny's treatment that I was being blackballed.. Then there was evidence that someone had somehow gotten into my email and was spying on my instant message with Johnny's niece. I started feeling uneasy and afraid to go out at night.

Just 4 months after Johnny's death I had to make the decison to leave Washington and move back to California.. I had to leave the home we had shared. The place where we had been so happy together. The place where I still felt his presence. Once more my heart was being torn apart.

I was not only hurt but I was very angry. I was angry at the people who I blamed for his death and I was angry at his family but most of all I was angry at God. He had seemed to answer my prayer when I found a treatment center that was willing to treat both his physical condition and his anxiety. He had improved over night and I was so certain that he would be alright again that I ignored some danger signs that I shouldn't have missed. I saw things done to him that I knew were wrong but let them go because I was so certain that God was going to save him.. I just didn't count on people and what they would do. So I blamed God and felt that my faith had betrayed me.. Getting my final divorce papers and the aplication for the new treatment center on the day of his death just added to my sense of injustice.

Once back in California I started work again as a caregiver. I worked hard and tried to stay detatached but one day a man I was caring for gave me hope again.. He said something that made me know that life does not end when a person dies. I had seen so much evidence of that after Johnny's death but it was having it confirmed by that man that let me start to turn to God again. I still had to battle the anger and depression but it was a start.

Once again circumstances caused me to move just 6 months after being settled into a new place and job. My niece was moving and to be near family I had to make the decision to move too. It was hard but I did it.

Once here I decided to take time off of work and get my life back together. I spent 6 months nearly isolated here. I had no television and saw very little of my niece. I spent hours just meditating and writing the story of mine and Johnny's life together. I had little money and no insurnace so I could not afford to go to therapy and I was afraid of medication after watching Johnny die because of it. I had to find a way to make it on my own. That proved to be the best thing for me..

Slowly I became a part of this small community. I started meeting my neighbors and joined the small church across the street.. I also relived my life and searched my heart and soul to learn how and why I ended up here alone. Then a fire came and I had to evacuate and leave what little I had behind. I had little time and could take only a few things with me. I thought that I would lose everything. All of my personal belongings and all of the precious things I had left of Johnny's, everything that we had shared together from our bed to our dishes that I had bought just for us. I prayed for those things to be spared and by some miracle they were..

Sense the fire I have become a part of this community more and more. I feel like I belong here more than anywhere I have ever been except for those few precious months with Johnny.. I have lost most of my anger. I've learned that I can forgive without condoning and because of that I have made my peace with myself and Johnny's kids. I still have not gotten far enough to forgive the doctors in charge of his care and maybe I never will but I have enough faith to know that my God understands and forgives me for that weakness..

Slowly inch by inch I clawed my way out of that pit of depression. Sometimes I would be almost to the top then suddenly find myself back at the bottom again. I know that it is always there just waiting for me to slip back into it again and I have to guard against that.

I have come a very long way but I didn't do it alone. I have had the support of this message board and some very dear friends that I have made. I met one lady on this board who has become a special friend and through her another one who has become a dear friend. I have Johnny's uncle in Missouri that I have gotten to know and become friends with sense his death. I have the chaplin in Washington who Johnny had liked and admired who has been a friend to both of us. I have my friends and neighbors that I have met here and Johnny's family as well as my own.

My life is not perfect. I struggle everyday both emotionally and finacially. I work very hard as a personal caregiver. I have a few clients and most of the work I do is housework. These are people who have had no help for years and there is much hard work to get their homes clean and straight. I am not expected to do everything that I do but I do it anyway. I feel like if I give a little more I can make them feel like they deserve it. I know how important that would have been had someone done that for Johnny. I know what it would mean to me if I were in thier place. Unfortunately most of my jobs pay only minimum wage so I struggle to make ends meet. I am also very tired and at times wonder how long I will be able to continue at this pace. Still I feel like I am doing what I am meant to do.

There is not a day that goes by that I don't ache for Johnny. It is hard to live your life with no one to share little intimate things with. Sometimes I ache for a hug or a touch on the hand. I miss having him to snuggle at night and I miss having him to laugh and cry with.. Still I am making it. I won't say I am healing because I don't think my wound will ever heal. I am just learning to live with things the way they are and make the most out of it.

I have learned that sometimes we have to reach our darkest hour in order to reach down inside of ourselves and find the best that we can be. I know too that is when we start to realize that no matter how bad things get, how dark our lives seem we are never really alone but always surrounded by the awesome power of God's love. That knowledge sustains me.

I believe in God and I believe in miracles. After all wasn't my dream that brought us together a miracle? I have had so much evidence sense Johnny died that he is still with me only in a different way. I do get lonely but that is a lonliness from missing Johnny. Being alone doesn't bother me in fact I am very jealous of my time alone and make sure to protect it as much as I can. But I know that I am not really alone. I know that God is with me and I know too that even if I can't see or touch him Johnny is only a breath away.. I feel them both helping and guiding me though every day.

I try very hard to be patient and compassionate. I want to help people as much as I can, especially people who are getting older or those who are ill. I also still want to work to change the attitude toward lung cancer that I believe is partly responsible for Johnny's death and so much of the havoc in the lives of those who live with it every day. I'm not sure if I will ever meet those goals but I don't give up hope. I know that everything starts with one small step. I want to not be angry anymore. I want to be the woman that Johnny loved and admired. I want to honor him and make him proud of me. I'm not sure how well I do with any of those things but I try and that keeps me going.

There are still times I feel like life of fate or God played a dirty trick on me by giving me and Johnny a second chance then snatching it away. Then I stop and think about how close we came to missing the time we had together and I know that no matter how painfull my life is now that time was a special gift to both of us. Each night I thank God for giving us that.

So you see as hopeless as it seems life does go on even when you have lost the one person who completes you. It is a struggle but it does happen. It is not the life you had before, that life is gone and learning to live with your loss becomes another life. That is what survival is, not healing. If I look to the future it overwhelms me and depresses me. I have learned to take it one day at a time. Sometimes one minute at a time....Life does go on!

[pecola]

Lillian, yours and Johnny's story is a beautiful story of love and miracles - but I am even more impressed by your solo story of a woman who lives her life steered by her heart and eternal hope.

Thanks for sharing your heart with us Lillian. You continue to inspire me every time I read your words.

Love and best Wishes,

Gina

[Karen]

Dearest Lillian,

I want to be the woman that Johnny loved and admired. I want to honor him and make him proud of me. I'm not sure how well I do with any of those things but I try and that keeps me going.

You are absolutely the woman he still loves and admires. Your journey has not been an easy one and yet you take time to share it with others. You are a blessing to all of us and to the small community you have joined.

My mother-in-law has said she read somewhere that the cure for sorrow is conversation. I think that could easily include written conversations, whether those "conversations" are with a family of support group members across the Internet (you) or private conversations in a bound journal with God and a lost love (her). You both have dealt with your pain by working to heal while deep within its grasp. I think you are both two very brave and honorable women.

God bless~

Karen

[Ann]

Lillian, thanks so much for sharing these words with all of us. The love you and Johnny shared was (and always will be) very special. The kind of love you and Johnny shared only come once in a lifetime and only then to those that are very lucky. I had this love with Dennis. I think the wonderful thing about all of your stories is that you, Lillian, are a survivor. So many times during your painful journey you have doubted your abilities. Now, my dear friend, you know just how strong a lady you really are!!! Together, we will make this journey.

[lilyjohn]

Thank you Gina and Karen for your kind words. I have to be honest with you. I really do want to find a way to use my experiences to try to help others but much of what I do is selfish. Being able to write about these things and share them with others has literally saved my life.

When Johnny died I was lost and alone. All of my life I had taken care of someone from my mother when she was hurt and I was only 15 to my husband, children and grandchildren and then Johnny. Not only did I lose the love of my life but the one thing that I had always done. The one thing that seemed to be my purpose for living. When he died all I really wanted to do was just lay down and die so I could be with him again. Seeing the way he died and knowing the reason for it was the one thing that kept me going. I had to find a way to somehow let people know what I knew. I had to find a way to somehow work to change that attitude that I knew was responsible for his death. To do that I had to learn as much as I could about Lung Cancer and all that goes with it. I started to research.

All of my life I dreamed of being a writer. Words just come to my head and go round and round until I put them down. No one ever knew about that dream because I was afraid that I would be laughed at. I didn't believe I had the talent it would take. One time I showed a poem I had written to my husband. His response was that I should find something else to do instead of wasting my time on something so foolish. After that I wrote in private and never shared what I had written with anyone.

When Johnny and I first got in contact again I wrote him long letters. He told me that I had a way with words and should write. I had not told him about my dream of being a writer yet he encouraged me to do the one thing that I wanted to do. After a while he wanted me to write our story. He said our love that had lasted so long and the way we found eachother again was a love story for the ages. He said it would be a best seller. At the time he had no idea just how much our story would grow. How intense it would become.

Using my reasearch and the talent that Johnny told me that I have I wrote a paper stating that it is time for a change in the way cancer is viewed. At the time I was in contact with a lady at CTCA in Seattle. She asked permission to print my paper in her monthly news letter. She also suggested that I find some cancer message boards and post there. I took her suggestion and soon started getting letters from poeple. Some were telling me about their experiences with that attitude and others were thanking me for helping them.

I'll never forget two of those letters. One lady asked if she could print my paper in the monthly newsletter for her breast cancer surviver group. Another told me that she had looked for and printed out everything that I had written. She said that she kept it with her and when she started to lose hope she took them out and read them.

It was during that time that a lady from The American Cancer Society suggested that I join an experimental on line bereavement group for people who had lost a partner to cancer. I joined and between that and my writing I found a way to get through those first few weeks. It was not long before I realized something. Even those who had lost someone to cancer still had that same attitude toward Lung Cancer. That is when I knew that I had to do all I can do to work on changing that attitude. It gave me a reason to live.

I needed to find a way to honor Johnny's request and write our story. I just had no idea how to begin. I started keeping a daily journal. In that jounal I poured out everything that was in my heart. All of the fear, pain and anger. Every experience that I had went into those pages good and bad but at the time most were bad. I used the pages of my journal to write long letters to Johnny and I used them to document everything that I was learning about Lung Cancer and the medications that I knew had played a part in his death. I called my writing A journal of passions because that is exactly what it is. All of the passion inside of me from love to hope pain and anger are in those pages. I began to see that maybe someway I could use those pages to help support others who were going through the same thing. That gave me one more reason to go on living.

Everytime I see someone else who has lost their partner, husband , soul mate I go back to that time. I feel all of that raw pain again. I think that helps me to be a more compasionate person. I know that people mean well when they say all of the standard things. I have heard them time and time again. The truth is if they have never been there they just don't know. Often the ones who have been there will not tell the whole truth because they just don't want to take hope away from those who are just starting out on this journey.

The honest truth is that you never really heal. Time does not heal all wounds and time alone does not make it better or easier to live with. It takes love, faith, prayer and a lot of damn hard work to begin to live again. Even then it will never be the life that you knew before. Your world has changed. There is no more balance in your life. You have to learn to live in a world that is slightly off center.

Whenever you lose anyone you love your life changes. They take so much of you with them and they leave so much of themselves with you but losing the one person who you had the most intimate circle of love with increases those things one hundred fold. At first you find you have all of that love and nowhere to focus it. You no longer think that you still have the love coming back to you that has always been there. The most intimate relationship in your life has changed. The one thing that you have to realize first is that it has not ended. The love you have for that person is still alive and even if they are no longer with you physically their love still is. Once you learn that you can go on to the next stage of learning to live a different life.

One of the hardest things for me to overcome, and I'm pretty sure that others feel it too, is the feeling that if your heart doesn't constantly bleed you are somehow being unfaithful to the love that the two of you shared. You feel like without the pain the love will die. Getting past that takes the longest and the most work.

You have to realize that the pain does not go away. It just becomes manageable. I have one way to describe it that I think everyone can relate to.

Several years ago I found out that I have TMJ. I found out because I developed a constant ringing in my ears. At first it was so bad and so distracting that I felt cut off from the rest of the world. The same feeling that I had when Johnny died. It took months of work to get the ringing to a point where I can live with it. Because the damage had already been done it can not be reversed. Now I am always aware that it is there but most of the time I can live without it interfering with the rest of my life. Yet there are times when it is very quiet that I hear it just like I did in the beginning. I have that same sense of being disconnected from the rest of the world. The pain from losing Johnny is the same.

Everyday of my life I know that it is there. It is like a ache that never really goes away but I have grown so used to it that I can live with it. Still there are those times when once again the pain flares up and I realize that there is a part of me that will always be just as raw, just as displaced as I was that first day. The only way to really go one with my life is to accept that and learn to live with it and when the time comes that the pain gets too great I just let it comsume me for a while, then slowly I can pick up the pieces and start to live a little again.

I only hope that somehow I can really be of help to others. There is not a lot I have to offer but I think that really understanding is the first step to not only help others but myself as well.

[lilyjohn]

Bless you Ann for being the special friend that you are.