Sunday, October 20, 2013
Saturday, October 19, 2013
Challenges
I don't expect others to understand what I'm dealing with, but it would be great if they could accept that I'm dealing with things they can't understand.
Friday, October 18, 2013
This year was all about Brian. Every minute was about him and his health. On December 31, 2012 we spent the day I the er. We knew something was very wrong, but we didn't know what. So every moment became about him - caring, worrying, wondering. Then on January 7th we went for what we thought was a doctor appointment with a gastroenterologist, and he never came home again. We lived in the hospital, we lived in hospice, he died in hospice. Every single moment became about Brian, about taking care of Brian, about the cancer.
Before Brian got sick, we were dealing with some of my problems. I had (still have) a serious and painful condition with my eye and also back problems. When my back went out and I was stuck in bed, Brian had to do everything for us - for me. When my eye pain escalated, Brian had to drive me long distances to see doctors, hold my hand during frightening and painful treatments, comfort me when the stress of chronic pain became unbearable. He was always there for me. He never complained. He never lost patience. I remember sometime last Fall feeling badly and apologizing for being so needy and for needing to much help and support from him. He smiled and assured me that there was no need to feel bad. He loved me and helping to take care of me was part of loving me. Then he said, "Someday I'll be sick, and you'll take care of me. It's all part of love."
I wonder if he knew something was wrong. Did he have some sense about the cancer? It was just a few months before he felt sick. The cancer must have already been spreading through his body? Did he know or imagine that that someday would be so soon?
And, of course he was right. From the time he got sick, through his diagnosis, procedures, treatments and stay in hospice, every second became about helping him. Of course he still cared for me too - he knew that my loss would be unbearable, and he tried to prepare me to survive without him, but life centered around Brian and the insidious cancer.
Since he has been gone, my life centers about pain the worst being unbearable grief. My eye condition has continued to get worse and causes me chronic and severe pain. The doctors don't know how to treat it and some of the medications we try cause side effects that make me very sick. My back problems have escalated and I have surgery planned for next month. My heartbreak is untreatable. So I have been suffering from severe and unrelenting physical and emotional pain.
Had he been here, Brian would have been my rock through all this. I feel the loss so strongly. In the face of so much pain I miss my love, my partner, my caregiver, my supporter, my comforter - the one person who could always make me laugh. And while I have amazing support through friends and family, I've lost the one person who brought me courage, comfort and hope.
I had a few doctor appointments today. One doctor had some new answers for me. The second doctor admitted that we really have no answers about my eye and are sort of stumbling in the dark with treatment. That was frustrating to hear, but no surprise. But the doctor with answers made some sense.
Initially I felt relieved to have some information that made sense, but that soon turned to sadness. Brian so lovingly look care of me for so long, but died before getting any answers. He knew that these conditions caused me pain, and when doctors had no answers and I began to question my sanity and wonder if the pain were just in my head, we would reassure me that I wasn't crazy. He saw my pain and watched me struggle, and he always supported me. So today, in the face of so much pain from so many sources, when I finally got an answer to one tiny piece of the pain puzzle, my relief quickly turned to despair that Brian will never know.
He knew me and always believed me. I'm the one that always needed validation to trust my own feelings - even pain. But the fact that I can't share this with Brian after he cared for me for so so long really hurts. He doesn't know that I'm seeing new doctors, struggling through new treatments, facing surgery and seeking answers. After all his love, support, and unending belief in me he'll never know the answers. Despite his amazing love and words, I felt that my pain and neediness were burdens, and it breaks my heart all over again that he helped me so much, but will never know as I get answers, new treatments and eventually some relief.
I still look to Brian for comfort and courage, but everything is so much harder for me without him, and I wish that after all the tender care that he gave me, he could be here now - not so much to care for me but to see some resolution after all his efforts.
It is hard to face pain and uncertainty without him by my side. It is painful to think off how long he cared for me in blind faith and love and that he will not be here for any resolution.
Before Brian got sick, we were dealing with some of my problems. I had (still have) a serious and painful condition with my eye and also back problems. When my back went out and I was stuck in bed, Brian had to do everything for us - for me. When my eye pain escalated, Brian had to drive me long distances to see doctors, hold my hand during frightening and painful treatments, comfort me when the stress of chronic pain became unbearable. He was always there for me. He never complained. He never lost patience. I remember sometime last Fall feeling badly and apologizing for being so needy and for needing to much help and support from him. He smiled and assured me that there was no need to feel bad. He loved me and helping to take care of me was part of loving me. Then he said, "Someday I'll be sick, and you'll take care of me. It's all part of love."
I wonder if he knew something was wrong. Did he have some sense about the cancer? It was just a few months before he felt sick. The cancer must have already been spreading through his body? Did he know or imagine that that someday would be so soon?
And, of course he was right. From the time he got sick, through his diagnosis, procedures, treatments and stay in hospice, every second became about helping him. Of course he still cared for me too - he knew that my loss would be unbearable, and he tried to prepare me to survive without him, but life centered around Brian and the insidious cancer.
Since he has been gone, my life centers about pain the worst being unbearable grief. My eye condition has continued to get worse and causes me chronic and severe pain. The doctors don't know how to treat it and some of the medications we try cause side effects that make me very sick. My back problems have escalated and I have surgery planned for next month. My heartbreak is untreatable. So I have been suffering from severe and unrelenting physical and emotional pain.
Had he been here, Brian would have been my rock through all this. I feel the loss so strongly. In the face of so much pain I miss my love, my partner, my caregiver, my supporter, my comforter - the one person who could always make me laugh. And while I have amazing support through friends and family, I've lost the one person who brought me courage, comfort and hope.
I had a few doctor appointments today. One doctor had some new answers for me. The second doctor admitted that we really have no answers about my eye and are sort of stumbling in the dark with treatment. That was frustrating to hear, but no surprise. But the doctor with answers made some sense.
Initially I felt relieved to have some information that made sense, but that soon turned to sadness. Brian so lovingly look care of me for so long, but died before getting any answers. He knew that these conditions caused me pain, and when doctors had no answers and I began to question my sanity and wonder if the pain were just in my head, we would reassure me that I wasn't crazy. He saw my pain and watched me struggle, and he always supported me. So today, in the face of so much pain from so many sources, when I finally got an answer to one tiny piece of the pain puzzle, my relief quickly turned to despair that Brian will never know.
He knew me and always believed me. I'm the one that always needed validation to trust my own feelings - even pain. But the fact that I can't share this with Brian after he cared for me for so so long really hurts. He doesn't know that I'm seeing new doctors, struggling through new treatments, facing surgery and seeking answers. After all his love, support, and unending belief in me he'll never know the answers. Despite his amazing love and words, I felt that my pain and neediness were burdens, and it breaks my heart all over again that he helped me so much, but will never know as I get answers, new treatments and eventually some relief.
I still look to Brian for comfort and courage, but everything is so much harder for me without him, and I wish that after all the tender care that he gave me, he could be here now - not so much to care for me but to see some resolution after all his efforts.
It is hard to face pain and uncertainty without him by my side. It is painful to think off how long he cared for me in blind faith and love and that he will not be here for any resolution.
Tuesday, October 15, 2013
Liar
Grief has turned me into a liar.
Everyday I find myself telling untruths. People ask me "how are you doing?" and I answer:
"Fine, thanks."
"Ok."
"Hanging in there".
"Taking it one day at a time." or some other equally untrue little answer designed not to make others too uncomfortable.
How am I? I'm terrible. I'm sad, lonely, in constant emotional and physical pain. I don't look forward to anything. I struggle each day. I fight to hold back the tears around others, and only let them flow freely when I am safely alone. I'm afraid, I'm impatient, I feel like so very many people can sympathize, but nobody can really understand the depth of my despair.
Every day, I go to work, or to appointments, or to the supermarket and I smile at strangers. I say thank you. I put on a mask of being ok; normal. I'm not.
I'm a liar.
Everyday I find myself telling untruths. People ask me "how are you doing?" and I answer:
"Fine, thanks."
"Ok."
"Hanging in there".
"Taking it one day at a time." or some other equally untrue little answer designed not to make others too uncomfortable.
How am I? I'm terrible. I'm sad, lonely, in constant emotional and physical pain. I don't look forward to anything. I struggle each day. I fight to hold back the tears around others, and only let them flow freely when I am safely alone. I'm afraid, I'm impatient, I feel like so very many people can sympathize, but nobody can really understand the depth of my despair.
Every day, I go to work, or to appointments, or to the supermarket and I smile at strangers. I say thank you. I put on a mask of being ok; normal. I'm not.
I'm a liar.
Saturday, October 12, 2013
Tears
Today the sun went down before I cried. I didn't plan it, its not like I set a goal. It just happened. When I took Lola out tonight, the tears just came, and I realized that they were the first tears of the day.
I don't think it is a sign of healing. I think that I'm feeling angry, and so helpless because there is nobody to be angry with. I can't direct anger at anyone. I'm just so angry that this is now my life. This is not what I ever planned for or even imagined. Brian and I planned to grow old together.
How do I face the future alone? How do I manage my fears alone?
I made it through most of the day today without tears, but when they came they were scalding. I lay in our bed alone, and the night seems so long, cold, and terribly lonely.
I don't think it is a sign of healing. I think that I'm feeling angry, and so helpless because there is nobody to be angry with. I can't direct anger at anyone. I'm just so angry that this is now my life. This is not what I ever planned for or even imagined. Brian and I planned to grow old together.
How do I face the future alone? How do I manage my fears alone?
I made it through most of the day today without tears, but when they came they were scalding. I lay in our bed alone, and the night seems so long, cold, and terribly lonely.
Wednesday, October 9, 2013
Changing
It just doesn't get easier. It changes over time, but it doesn't get better. As more time passes, I actually miss him more. I find myself seeing something new that I thin he would like, and I want to tell him. Then the reality hits and I cry - behind the wheel, in the supermarket - wherever. I went to get some blood tests drawn, and when I walked into the lab, the radio was playing one of his favorite songs and I cried.
I just turned 50, and my life is nothing like what I imagined or planned. We planned to grow old together. We planned to enjoy retirement together. We were going to be that old couple whose public displays of affection embarrassed all the young people. We were partners, we were lovers, we were best friends.
I miss him. I miss his companionship. I miss laughing with him. I miss his support and his advice. I miss his hugs and his voice. I miss my life with my husband. Time is not healing these wounds. Time is just reminding me of the permanence of my loss.
I just turned 50, and my life is nothing like what I imagined or planned. We planned to grow old together. We planned to enjoy retirement together. We were going to be that old couple whose public displays of affection embarrassed all the young people. We were partners, we were lovers, we were best friends.
I miss him. I miss his companionship. I miss laughing with him. I miss his support and his advice. I miss his hugs and his voice. I miss my life with my husband. Time is not healing these wounds. Time is just reminding me of the permanence of my loss.
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