We celebrate birthdays and anniversaries. We teach children that the anniversary of their birth is a day to celebrate with cake and ice cream and presents. We celebrate our marriages each year on the anniversary of our weddings. Celebrations of life - reliving happy memories and cherishing our blessings.
But what about the anniversaries of death and of pain? They descend upon us with renewed anguish. They intensify our pain. A year ago Brian was alive. He had terminal cancer, but we didn't know it. We thought he had a bad gall bladder - we thought he would be ok. Yesterday, today and four months of tomorrows are anniversaries of horror. Memories of seeing him sick, of losing hope, of a doctor telling me that he was dying. Memories of what they did to his body - how they cut him open like a fish and stapled him back together like a torn package without fixing the broken parts inside. Memories of chemo fogging his mind and tormenting his body. Of procedures that didn't work. Of a perforated stomach - repaired, only to reperforate in a few days. Memories of bodily fluids, of drainage tubes. Of ticking machines and hospital noises. Memories of darkness and dispair, of loss and anger. Memories of life slowing slipping away - the fragility of the human body. Memories of drugs and medications, and over-medications. Of vomit and bile and urine.
Memories of a wonderful man, being eaten alive from the inside. A man I loved with all my heart who couldn't get out of bed, who couldn't eat, who couldn't fight the cancer cells that robbed him of his freedom and then his life. Memories of nights in the dark watching his chest rise and fall. Of jumping up to make sure he was still breathing. Memories of offering help and comfort and love. Help that didn't really help anything, and comfort that couldn't change anything, and love that maybe helped to make the whole business of dying a little less horrific - maybe, but probably not.
Memories of the end, when medications were no longer given to avoid pain, but rather to end pain. When I had to push the button that I knew would ultimately end his life, and which was the most painful thing and probably the most loving thing I have ever done. What do we do with those anniversaries? How do we survive them? How can I focus on how beautiful Brian was, and how brave, and gracious, and grateful he was until the end, when all I can feel is a pain so searing that I think I may not survive?
There is no cake, no ice cream, no possible way to honor him and to lessen the pain of those memories. No way to survive those anniversaries, but to brace yourself for an onslaught of pain and hurt and hope that we come out the other side relatively whole.
I am just at the beginning of so many of those anniversaries. Painful anniversaries that occur on New Years, on friend's birthdays, on our wedding anniversary. Pain that overshadows any celebration of life.
Last year New Years Eve day was spent in the emergency room. New Years Day spent in bed googling for some hope - hope that was crushed on January 8th.
Tuesday is New Year Eve - a time when we are told to reflect on the wonderful memories of the past year, and resolve to live fully in the coming one. There wasn't a moment of 2013 that wasn't shadowed with pain and loss, and looking ahead to 2014 is unbearable. It will be a year in which there are no new memories of Brian. A year in which he ceases to exist in the world, but lives so strongly in my heart. A love that can no longer be shared or expressed or enjoyed. A love so true that it has left a hole too large to be filled.
I don't know how to live with these anniversaries. I don't know how to manage this pain.
Sunday, December 29, 2013
Thursday, December 26, 2013
2014
Having somehow survived Christmas, despite more pain and tears than I thought possible, today it dawned on me that tomorrow is another holiday. New Years. Another day to dread.
Brian and I were never New Years Eve party animals. We were pretty boring by conventional standards, and didn't really go for forced celebration. Most New Years Eves we just stayed home. We'd make a baked Brie, open a bottle of wine, and just have a quiet night together. And that was great. Last year on New Years Eve day we were in the hospital. That night, there was no brie or wine. That night we knew that something was seriously wrong. We spent New Years Day in bed watching a marathon of The Tudors - he dozing on and off, me trying to keep my worrying under control.
That first week on January was the start of a nightmare. He was so sick, so uncomfortable. He couldn't hold anything down. His abdomen was so full with ascites that it was difficult for him to breath and impossible for him to sleep. I worked, but came home several times to take him for periocentisis and doctors appointments. Evenings I spent running out for prescriptions, Gator aid, chicken soup, electrolyte popsicles - anything that might help him be more comfortable , anything that he could keep down. I tried to limit my tears to the car so he wouldn't see me cry. That week was horrible, but nothing compared to the weeks yet to come.
2013 was a horrible nightmare from day one. So many people have told me that 2014 is right around the corner, and that it will be a better year, and foolishly, until today, I thought "how could it possibly be worse?"
So today, for the first time, my mind wandered to New Years. I have nothing to celebrate - I won't be going out. Staying home with the love of your life is a gift. Staying home alone with memories of how sick he was is torture. But forget that one night - that holiday we refused to be pressured into celebrating - the whole reality of 2014 is incomprehensible. 2013 has been the worst year of my life, but he was here for four months. As sick as he was, until the last three days of his life he remained grateful, loving, funny, caring, smart - all those amazing qualities that endeared him to all he met and that made me fall head over heals in love with him. In 2013, we suffered so much loss, but like everything else in our relationship, we did it together.
Now, with the flip of a page in a calendar, I have to welcome a new year during which Brian is gone. In 2014 we won't sing, dance or cry together. I have to move on without him, and I don't know how. I don't know how to handle this pain.
I have cried every single day since 12-28-13, but today tears and grief were like those from last January when I had to face the unthinkable. Last year fate was cruel and made me watch my husband die. In 2014, fate will force me to live in a year with no shared memories, no contact, no comfort. My broken heart will be forced to beat day after day, and the only person who could possibly help me come to terms with this cruel turn of events can't be here with me.
I feel so alone, so isolated, so completely lost. Each day is filled with loss and fear. The depths of despair seem to have no limits, and I do not have the tools needed to navigate through this cold void.
Brian and I were never New Years Eve party animals. We were pretty boring by conventional standards, and didn't really go for forced celebration. Most New Years Eves we just stayed home. We'd make a baked Brie, open a bottle of wine, and just have a quiet night together. And that was great. Last year on New Years Eve day we were in the hospital. That night, there was no brie or wine. That night we knew that something was seriously wrong. We spent New Years Day in bed watching a marathon of The Tudors - he dozing on and off, me trying to keep my worrying under control.
That first week on January was the start of a nightmare. He was so sick, so uncomfortable. He couldn't hold anything down. His abdomen was so full with ascites that it was difficult for him to breath and impossible for him to sleep. I worked, but came home several times to take him for periocentisis and doctors appointments. Evenings I spent running out for prescriptions, Gator aid, chicken soup, electrolyte popsicles - anything that might help him be more comfortable , anything that he could keep down. I tried to limit my tears to the car so he wouldn't see me cry. That week was horrible, but nothing compared to the weeks yet to come.
2013 was a horrible nightmare from day one. So many people have told me that 2014 is right around the corner, and that it will be a better year, and foolishly, until today, I thought "how could it possibly be worse?"
So today, for the first time, my mind wandered to New Years. I have nothing to celebrate - I won't be going out. Staying home with the love of your life is a gift. Staying home alone with memories of how sick he was is torture. But forget that one night - that holiday we refused to be pressured into celebrating - the whole reality of 2014 is incomprehensible. 2013 has been the worst year of my life, but he was here for four months. As sick as he was, until the last three days of his life he remained grateful, loving, funny, caring, smart - all those amazing qualities that endeared him to all he met and that made me fall head over heals in love with him. In 2013, we suffered so much loss, but like everything else in our relationship, we did it together.
Now, with the flip of a page in a calendar, I have to welcome a new year during which Brian is gone. In 2014 we won't sing, dance or cry together. I have to move on without him, and I don't know how. I don't know how to handle this pain.
I have cried every single day since 12-28-13, but today tears and grief were like those from last January when I had to face the unthinkable. Last year fate was cruel and made me watch my husband die. In 2014, fate will force me to live in a year with no shared memories, no contact, no comfort. My broken heart will be forced to beat day after day, and the only person who could possibly help me come to terms with this cruel turn of events can't be here with me.
I feel so alone, so isolated, so completely lost. Each day is filled with loss and fear. The depths of despair seem to have no limits, and I do not have the tools needed to navigate through this cold void.
Wednesday, December 25, 2013
Christmas Day
Last year Christmas Day was the last time we went out for anything fun. We went with friends to see Les Miserable in the movie theatre, and then out for Chinese food.
I have always loved Les Mis. I had see the play 11 times in England, on Broadway and in Florida. It was my favorite. A few years ago Brian watched the 25 year anniversary concert video with me, and he, too, fell in love with the music of Les Miz. When the show came on tour we were able to buy tickets. His first time seeing the play was my 12th.
So last year on Christmas Day, I put on my 24601 shirt, and we eagerly went with friends to watch the movie on opening day. I think Brian enjoyed the film even more than I.
Afterwards, we all went out for Chinese food. The service was unusually bad, the food unusually unpalatable. When Brian's dinner arrived cold an inedible, he sent it back and opted not to order something else because his stomach felt unsettled.
That outing was our last. The last time we did anything for fun. The last time we left the house for anything other than trips to doctors or pharmacies. The last day when it wasn't obvious that Brian was really sick. December 25th, 2012, was the last day I lived without true worry or pain. Just three days later on December 28th, I took Brian to urgent care. We thought it was a gall bladder attack, and while I cried that my husband might need emergency surgery, Brian felt relief that a simple operation would fix everything.
How wrong we were! We had no idea that the next two weeks would be marked by visits to the er and various doctors appointments. We had no idea that we would spend New Years Eve Day in the hospital for his first of many periocentisis. We had no idea that on Monday January 7th I would take him for a doctor appointment, from which we went straight to the hospital. We didn't know that when we left the house that afternoon, he would never return. We didn't know that the exploratory surgery scheduled for January 8th would be a death sentence, and the first of many failed surgeries and procedures.
Last year on Christmas Day, Brian and I could still look forward to getting old together. We still could dream. We were so blessed with ignorance. 365 days later and all that is left are memories of a love story and marriage that were so extraordinary in their purity and depth. 365 days later, and the pain of last year is so heavy, so suffocating.
Today, Christmas Day 2013, I am supposed to go with friends to a movie and for Chinese food. Jewish Christmas. I can't do it. I can't go. The pain of all the memories are too heavy to bear. The next four months will be marked with so many horrific memories of one year ago. I'm grateful that I didn't keep a journal - that I can't place all of the terrible memories with specific dates, but it doesn't matter. A year later and my Brian, my one true love, is gone. Ashes buried in a grave. And while I shall always carry his love and light in my heart, it is far too soon for me to access them without having to peal away layers and layers of crippling pain.
My love for Brian is alive and true, but my heart is on life support, and right now - this Christmas - it's prognosis is bleak. I miss my Brian. I miss our life..
I have always loved Les Mis. I had see the play 11 times in England, on Broadway and in Florida. It was my favorite. A few years ago Brian watched the 25 year anniversary concert video with me, and he, too, fell in love with the music of Les Miz. When the show came on tour we were able to buy tickets. His first time seeing the play was my 12th.
So last year on Christmas Day, I put on my 24601 shirt, and we eagerly went with friends to watch the movie on opening day. I think Brian enjoyed the film even more than I.
Afterwards, we all went out for Chinese food. The service was unusually bad, the food unusually unpalatable. When Brian's dinner arrived cold an inedible, he sent it back and opted not to order something else because his stomach felt unsettled.
That outing was our last. The last time we did anything for fun. The last time we left the house for anything other than trips to doctors or pharmacies. The last day when it wasn't obvious that Brian was really sick. December 25th, 2012, was the last day I lived without true worry or pain. Just three days later on December 28th, I took Brian to urgent care. We thought it was a gall bladder attack, and while I cried that my husband might need emergency surgery, Brian felt relief that a simple operation would fix everything.
How wrong we were! We had no idea that the next two weeks would be marked by visits to the er and various doctors appointments. We had no idea that we would spend New Years Eve Day in the hospital for his first of many periocentisis. We had no idea that on Monday January 7th I would take him for a doctor appointment, from which we went straight to the hospital. We didn't know that when we left the house that afternoon, he would never return. We didn't know that the exploratory surgery scheduled for January 8th would be a death sentence, and the first of many failed surgeries and procedures.
Last year on Christmas Day, Brian and I could still look forward to getting old together. We still could dream. We were so blessed with ignorance. 365 days later and all that is left are memories of a love story and marriage that were so extraordinary in their purity and depth. 365 days later, and the pain of last year is so heavy, so suffocating.
Today, Christmas Day 2013, I am supposed to go with friends to a movie and for Chinese food. Jewish Christmas. I can't do it. I can't go. The pain of all the memories are too heavy to bear. The next four months will be marked with so many horrific memories of one year ago. I'm grateful that I didn't keep a journal - that I can't place all of the terrible memories with specific dates, but it doesn't matter. A year later and my Brian, my one true love, is gone. Ashes buried in a grave. And while I shall always carry his love and light in my heart, it is far too soon for me to access them without having to peal away layers and layers of crippling pain.
My love for Brian is alive and true, but my heart is on life support, and right now - this Christmas - it's prognosis is bleak. I miss my Brian. I miss our life..
Sunday, December 22, 2013
Weekends
Weekends suck.
Work days are so long, its all I can do to get through them. Weekends are drenched with pain and loneliness. Waking up alone, going to sleep alone. I hate it. During the day, I try to get out and be around friends, but I always feel the loss. Then coming home to a house without Brian. It hurts. Saturday nights are the worst. Others are home with their family or out on the town. I'm alone with my pain.
When he was here, we often stayed in on the weekends, and that was great. It was our time. Now it is just so hard.
There are others who can not understand why my pain is so bad now, and they've made that clear in some not so kind ways. I want to talk it through with Brian. I want to share what has become of my life.
My back has healed well from surgery, but my eye problem is bad. While I've been struggling with this for over two years, I now feel visually impaired. It scares me, and I can't lean on Brian for help and support. I'm taking some powerful medications that may or may not help, and which offer the risk of serious side effects. I'm terrified. The first time that I needed an injection in my eye, Brian was in the room with me sharing his strength. Now I have to face all these challenges alone and I'm searching within for courage that I can't seem to find.
It sounds like I only miss Brian for the things he did for me and for his help. That's not true. When things are challenging I struggle without his support and belief in me, but what I miss most is him. I miss his huge laugh, his larger than life personality. I miss his arms around me. I miss dancing with him and Lola in our kitchen. I miss the peach fuzz on his shaved head. I miss his smell. I miss the sound of his voice. I miss HIM.
He told me to embrace life. He wanted me to live without fear, but I'm paralyzed by my fears.
Oh, Brian. I would not have traded a moment of my time with you for anything. Our relationship was the greatest gift in my life, and I'm so grateful for it, but I don't know how to live alone or how to quiet my fears.
Work days are so long, its all I can do to get through them. Weekends are drenched with pain and loneliness. Waking up alone, going to sleep alone. I hate it. During the day, I try to get out and be around friends, but I always feel the loss. Then coming home to a house without Brian. It hurts. Saturday nights are the worst. Others are home with their family or out on the town. I'm alone with my pain.
When he was here, we often stayed in on the weekends, and that was great. It was our time. Now it is just so hard.
There are others who can not understand why my pain is so bad now, and they've made that clear in some not so kind ways. I want to talk it through with Brian. I want to share what has become of my life.
My back has healed well from surgery, but my eye problem is bad. While I've been struggling with this for over two years, I now feel visually impaired. It scares me, and I can't lean on Brian for help and support. I'm taking some powerful medications that may or may not help, and which offer the risk of serious side effects. I'm terrified. The first time that I needed an injection in my eye, Brian was in the room with me sharing his strength. Now I have to face all these challenges alone and I'm searching within for courage that I can't seem to find.
It sounds like I only miss Brian for the things he did for me and for his help. That's not true. When things are challenging I struggle without his support and belief in me, but what I miss most is him. I miss his huge laugh, his larger than life personality. I miss his arms around me. I miss dancing with him and Lola in our kitchen. I miss the peach fuzz on his shaved head. I miss his smell. I miss the sound of his voice. I miss HIM.
He told me to embrace life. He wanted me to live without fear, but I'm paralyzed by my fears.
Oh, Brian. I would not have traded a moment of my time with you for anything. Our relationship was the greatest gift in my life, and I'm so grateful for it, but I don't know how to live alone or how to quiet my fears.
Saturday, December 21, 2013
Feeling
I survived last weekend, and I survived the week, but it was long and difficult and I'm exhausted. Remembering so many lasts from this time last year - from before the cancer diagnosis changed everything. It was just a year ago, but it was a lifetime ago. I do my hair and put on lipstick and go out in the world and function, but then I come home to my empty house and I'm alone, and I hate it. The nights are long and sleepless.
A few people have said things to me this week that have really hurt. They somehow think that I should be over it by now. How is someone going to get over loss in 8 months. He died 8 months yesterday. And last year Christmas Day was the last time we went out socially. And last year New Years Eve Day we spent in the emergency room. And this year on January 8th, the doctor told me he would die. How can anyone be so callous as to think that I should be over it by now?
It hurts, and I feel so much pain, so much loss. So alone. Alone and untouchable. When I'm with my friends, I can suppress the pain, but as soon as it's just me, the pain is back and more suffocating than before.
I recently met a man who lost his wife to cancer in July. I saw him last night, and we spoke, and cried, and for those few minutes I thought that there is someone who I can talk to who feels the extreme loss that I feel. And when he told his story, I cried for him and for the cruelty he experienced. For the first time, I've felt that there is someone who can really empathize, and while that doesn't relieve the pain, it does give me some hope. And when he kindly reached out and touched my arm, I thought that maybe someday I'll be able to feel again.
It's a bleak rainy weekend, and I hate being alone with my memories. I don't know which hurt more - the good or the bad ones. I just know that this loss is not going to heal on anyone's schedule - if it heals at all.
A few people have said things to me this week that have really hurt. They somehow think that I should be over it by now. How is someone going to get over loss in 8 months. He died 8 months yesterday. And last year Christmas Day was the last time we went out socially. And last year New Years Eve Day we spent in the emergency room. And this year on January 8th, the doctor told me he would die. How can anyone be so callous as to think that I should be over it by now?
It hurts, and I feel so much pain, so much loss. So alone. Alone and untouchable. When I'm with my friends, I can suppress the pain, but as soon as it's just me, the pain is back and more suffocating than before.
I recently met a man who lost his wife to cancer in July. I saw him last night, and we spoke, and cried, and for those few minutes I thought that there is someone who I can talk to who feels the extreme loss that I feel. And when he told his story, I cried for him and for the cruelty he experienced. For the first time, I've felt that there is someone who can really empathize, and while that doesn't relieve the pain, it does give me some hope. And when he kindly reached out and touched my arm, I thought that maybe someday I'll be able to feel again.
It's a bleak rainy weekend, and I hate being alone with my memories. I don't know which hurt more - the good or the bad ones. I just know that this loss is not going to heal on anyone's schedule - if it heals at all.
Sunday, December 15, 2013
Difficult weekend
This weekend sucked. The worst I've had in quite some time. I don't know if it was that I'm approaching so many painful anniversaries and facing so many horrible memories. I don't know if it was being cooped up from the snow. I don't know if it was the return of my eye pain and frustration over that. Maybe it's just part of the process. Regardless, it was horrible. I cried through most of it, and almost had a complete emotional breakdown at the Y. People politely ignored me and turned their heads. One woman snickered. Nobody asked if I was ok.
The isolation is horrible. I miss Brian so much. I was inconsolable, and just wanted to feel his arms around me. It's been so long since I've had a hug. I hugged him before his surgery on December 8th. After his surgery that day, he had so many tubes and drains, he couldn't hug me anymore. I didn't realize how horrible it is to not be touched. We always held hands. When we stood in line I leaned up against him. We hugged all the time.
Yesterday I stood at the Y, and I just wanted someone to hug me. I just wanted to feel connected to life. I just need to feel again.
The isolation is horrible. I miss Brian so much. I was inconsolable, and just wanted to feel his arms around me. It's been so long since I've had a hug. I hugged him before his surgery on December 8th. After his surgery that day, he had so many tubes and drains, he couldn't hug me anymore. I didn't realize how horrible it is to not be touched. We always held hands. When we stood in line I leaned up against him. We hugged all the time.
Yesterday I stood at the Y, and I just wanted someone to hug me. I just wanted to feel connected to life. I just need to feel again.
Lipstick
They say to fake it till you make it, so I'm trying. I colored my hair and had it trimmed. I started wearing makeup again. It's amazing what a little lipstick can do. So many people told me how great I look. My hair is great, I look so much happier, I've lost weight. So beautiful. It's so easy to put on a costume and play the part.
Then I went home and washed my face, and what I saw shocked me. My eyes are dead. How can a little lipstick cover up this grief and depression? I cry whenever I'm alone (and sometimes in public), I don't sleep at night, I've lost 20 pounds because I have no appetite and don't eat.
My physical pain is better, but emotionally? I've never been this depressed. I've never experienced this kind of pain. I have so much love and support, but I miss intimacy - and I'm not talking about sex. I'm talking about someone who really understands me without me having to explain. I miss the ability to be myself, to not wear the costume, to not self-censor. I miss the absolute and unconditional trust that Brian and I shared.
I miss the life we built together. The love, the laughter - the intimacy.
I guess I'll buy more lipstick.
Then I went home and washed my face, and what I saw shocked me. My eyes are dead. How can a little lipstick cover up this grief and depression? I cry whenever I'm alone (and sometimes in public), I don't sleep at night, I've lost 20 pounds because I have no appetite and don't eat.
My physical pain is better, but emotionally? I've never been this depressed. I've never experienced this kind of pain. I have so much love and support, but I miss intimacy - and I'm not talking about sex. I'm talking about someone who really understands me without me having to explain. I miss the ability to be myself, to not wear the costume, to not self-censor. I miss the absolute and unconditional trust that Brian and I shared.
I miss the life we built together. The love, the laughter - the intimacy.
I guess I'll buy more lipstick.
Sunday, December 8, 2013
Depression
I've been trying so hard to figure out how to live with grief. I don't know how to do it. I reach out to my friends, I force myself to get out, I try to rationalize my feelings, but there is no denying that I'm depressed. Severely depressed - and therapy or antidepressants aren't going to fix it.
I am not good at being alone with myself. I miss Brian. The loneliness is suffocating. I can't imagine that time can heal this unbearable loneliness.
I am not good at being alone with myself. I miss Brian. The loneliness is suffocating. I can't imagine that time can heal this unbearable loneliness.
Wednesday, December 4, 2013
Today
Today he was supposed to turn 49.
Today we were supposed to celebrate.
Today we were supposed to reminis about all our wonderful memories from the past year, and look forward to making memories together for years into the future.
Today nothing is as it should be.
Today we were supposed to celebrate.
Today we were supposed to reminis about all our wonderful memories from the past year, and look forward to making memories together for years into the future.
Today nothing is as it should be.
Monday, December 2, 2013
Comfort?
There is no comfort, only distraction. I reach out to friends, I work, I try to stay occupied; but the pain is always there, right at the surface. When the distraction ends, the pain returns with a shocking force. I am defenceless. I have no power to tame the despair. I am broken, torn, and isolated in my pain.
Sunday, December 1, 2013
stages of grief
How do you define grief? I haven't looked it up in the dictionary - and I'm not sure one can define it as grief changes with time.
Initially there was fear - fear of watching my husband suffer, fear of the unknown, fear that I wouldn't be strong enough to be there for Brian.
Then comes the selfish fear. How will I live without him. Fear of moving forward without my lover, my best friend, my confidant. Fear of being alone and lonely.
As the disease took over, the exhaustion set in. Life became focused on what little I could do to make him more comfortable. I brought him water, I gave him baths, I irrigated drainage tubs, emptied urinals, changed bedding, held the basin and wiped his mouth when he vomited. Nothing mattered more than his meager needs. I wasn't eating properly, I wasn't sleeping enough, I wasn't taking care of my own health. I just needed to be there to do anything and everything that I could do for him. The exhaustion was consuming, and when he slept, and I stayed up watching his chest rise and fall, I cried out of frustration with my powerlessness and my sheer exhaustion.
But things only get worse. You approach the final days. In his last week it was clear that Brian was slipping fast. He could no longer communicate and I had to guess as to what I could do to him. At that point the grief shifted its focus to me. At that point I knew he would be gone, and that knowledge is crushing. I tried to make sure he was aware that he wasn't alone - I sang our song to him, I promised him I wouldn't leave his side - and all the while the tears flowed. I couldn't hide the grief; I couldn't pretend to be anything but shattered.
I think that the absolute worst time, the most crippling moments were in the last two days. The days during which it was clear that I had to hit the mophine button - not to relieve his pain, but to end his pain.
He died at 5am on Saturday morning - 14weeks and 4 days after his diagnosis. 34 days in a hospital bed, 66 days in a hospice bed. He never came home, he never felt the sun on his face, he never left the bed. For the last hour oh his life I layed with him in bed and held him in my arms. At 5am he squeezed my hand, took two more breaths, and was gone. Just one day earlier, his last words, his only word were "Love You".
And that was it. I asked everyone to leave, and I bathed my husband's body. I kissed him goodbye, covered him with clean sheets, and waited until they came for his body,
That was April 20. Now its December 1. People think that the worst should be over. What do they know? The greif isn't over, it isn't better. It is different. And the one and only person who truly knows me, who understands how I think and how I feel, is gone. Cancer killed my Brian, and now my grief is like a cancer - it won't kill me, but it makes me question my ability to live.
Initially there was fear - fear of watching my husband suffer, fear of the unknown, fear that I wouldn't be strong enough to be there for Brian.
Then comes the selfish fear. How will I live without him. Fear of moving forward without my lover, my best friend, my confidant. Fear of being alone and lonely.
As the disease took over, the exhaustion set in. Life became focused on what little I could do to make him more comfortable. I brought him water, I gave him baths, I irrigated drainage tubs, emptied urinals, changed bedding, held the basin and wiped his mouth when he vomited. Nothing mattered more than his meager needs. I wasn't eating properly, I wasn't sleeping enough, I wasn't taking care of my own health. I just needed to be there to do anything and everything that I could do for him. The exhaustion was consuming, and when he slept, and I stayed up watching his chest rise and fall, I cried out of frustration with my powerlessness and my sheer exhaustion.
But things only get worse. You approach the final days. In his last week it was clear that Brian was slipping fast. He could no longer communicate and I had to guess as to what I could do to him. At that point the grief shifted its focus to me. At that point I knew he would be gone, and that knowledge is crushing. I tried to make sure he was aware that he wasn't alone - I sang our song to him, I promised him I wouldn't leave his side - and all the while the tears flowed. I couldn't hide the grief; I couldn't pretend to be anything but shattered.
I think that the absolute worst time, the most crippling moments were in the last two days. The days during which it was clear that I had to hit the mophine button - not to relieve his pain, but to end his pain.
He died at 5am on Saturday morning - 14weeks and 4 days after his diagnosis. 34 days in a hospital bed, 66 days in a hospice bed. He never came home, he never felt the sun on his face, he never left the bed. For the last hour oh his life I layed with him in bed and held him in my arms. At 5am he squeezed my hand, took two more breaths, and was gone. Just one day earlier, his last words, his only word were "Love You".
And that was it. I asked everyone to leave, and I bathed my husband's body. I kissed him goodbye, covered him with clean sheets, and waited until they came for his body,
That was April 20. Now its December 1. People think that the worst should be over. What do they know? The greif isn't over, it isn't better. It is different. And the one and only person who truly knows me, who understands how I think and how I feel, is gone. Cancer killed my Brian, and now my grief is like a cancer - it won't kill me, but it makes me question my ability to live.
Friday, November 29, 2013
Thanksgiving Night
I didn't want there to be a Thanksgiving this year. While I still have much to be thankful for, this holiday without Brian is unthinkable.
Last year we hosted Thanksgiving for some of our nieces, nephews, and one sister in law and it was the kind of Thanksgiving I have always dreamed of. I haven't forgotten that I had about 20 minutes of the crankies when I got stuck scrubbing all the pots and casseroles without help, but that only lasted until I got done. The kids were playing games, we all enjoyed just being comfortable with each other. It was pretty darned close to perfect. And Brian was there, and the two of us were happy, and thrilled to be having an amazing day with family. No tension, no fighting, no drama. Just good food, good fun, and a lot of love. It was to become a tradition. But...
And now Brian is gone, and our plans to create this wonderful tradition that we could enjoy with our loved ones and the next generation of loved ones - well - it just can't be. Nothing can ever be the way that I had dreamed.
This years plan was to just ignore the holiday. No cooking, no guests, no festive meal. I wanted to sleep through it and pretend it didn't exist.
My parents are still here. When they planned to come help me after the surgery, my mom refused to leave before Thanksgiving. While I would have liked to be alone so I could cry freely, I love her for insisting on staying. A few days ago I actually felt bad. My parents have been really great - and I was depriving them of Thanksgiving too. So I called Farm and made a reservation for 3 under my name. They always do a traditional turkey dinner, but also offer a vegetarian option. Mom and dad could have the holiday, and I could just eat. I thought it would be OK.
When we got there, many people were waiting to be seated. I gave the Maitre D' my last name. Just a few minutes later, a hostess tapped me on the shoulder and said, "Table for Brian?". It felt like time stopped. I couldn't breath. I didn't use his name when making the reservation or checking in. It felt like the most cruel kind of a joke.
I followed the hostess to our table - the same table where Brian and I ate the first time we went to Farm. A table set for four, with four menus.
Just as I started to feel like I had to leave, I stopped. This was no cruel joke. This was no cosmic message. This was just a little odd and unexpected. Brian and I had eaten there many times together. We have an unusual last name. We are polite patrons. Everyone loved Brian for his kindness, patience, and sense of humor - so it wasn't odd that they would remember his first name with our last name. I decided that I would just eat my meal, forget about the holiday, and hold all the love that Brian and I share close in my heart and my thoughts.
Dinner was OK, but it wasn't Thanksgiving - it was just food. My parents enjoyed there meals' as did I, but it was just a meal. If I planned to acknowledge Thanksgiving, it would have been the worst Thanksgiving ever - make that 2nd worse. There was no joy at our table, no laughter. No extended family. No favorite recipes. There was barely any conversation. And I think that I am Thankful for all that wasn't.
I don't know if I'll be ready to have Thanksgiving next year or if I'll need more time. I don't know much anymore. I do know that my husband was an amazing man. Nobody loves and appreciated him more than I, but so many people saw how special he was, and remember him as a wonderful man. From Jeff at Commercial Services who cried with me as he shared his memories of Brian, to all of our friends, to his clients, to the staff at the Farm. Brian was special, and he touched so many people, and he is loved and remembered by so many.
Today wasn't Thanksgiving for me. It was just a Thursday, and I survived it. The tears didn't begin to flow until I had privacy. My parents went to sleep, and I can think, and remember, and cry, and blog, and know that as sad as I now am, I am grateful to have Brian's love, and Thankful for every second we had together. Even while intentionally avoiding the holiday, I somehow managed to focus on being Thankful for Brian's love, humor, kindness and a million other qualities before letting in the pain and grief.
Brian, I wish you were here so I could tell you how thankful and grateful I am for our love, marriage, friendship, and completeness. I would also like to thank you for leaving behind your wisdom. I can't see you, I can't hear you, but I still rely on your wisdom, strength, and compassion to get me through each day.
Last year we hosted Thanksgiving for some of our nieces, nephews, and one sister in law and it was the kind of Thanksgiving I have always dreamed of. I haven't forgotten that I had about 20 minutes of the crankies when I got stuck scrubbing all the pots and casseroles without help, but that only lasted until I got done. The kids were playing games, we all enjoyed just being comfortable with each other. It was pretty darned close to perfect. And Brian was there, and the two of us were happy, and thrilled to be having an amazing day with family. No tension, no fighting, no drama. Just good food, good fun, and a lot of love. It was to become a tradition. But...
And now Brian is gone, and our plans to create this wonderful tradition that we could enjoy with our loved ones and the next generation of loved ones - well - it just can't be. Nothing can ever be the way that I had dreamed.
This years plan was to just ignore the holiday. No cooking, no guests, no festive meal. I wanted to sleep through it and pretend it didn't exist.
My parents are still here. When they planned to come help me after the surgery, my mom refused to leave before Thanksgiving. While I would have liked to be alone so I could cry freely, I love her for insisting on staying. A few days ago I actually felt bad. My parents have been really great - and I was depriving them of Thanksgiving too. So I called Farm and made a reservation for 3 under my name. They always do a traditional turkey dinner, but also offer a vegetarian option. Mom and dad could have the holiday, and I could just eat. I thought it would be OK.
When we got there, many people were waiting to be seated. I gave the Maitre D' my last name. Just a few minutes later, a hostess tapped me on the shoulder and said, "Table for Brian?". It felt like time stopped. I couldn't breath. I didn't use his name when making the reservation or checking in. It felt like the most cruel kind of a joke.
I followed the hostess to our table - the same table where Brian and I ate the first time we went to Farm. A table set for four, with four menus.
Just as I started to feel like I had to leave, I stopped. This was no cruel joke. This was no cosmic message. This was just a little odd and unexpected. Brian and I had eaten there many times together. We have an unusual last name. We are polite patrons. Everyone loved Brian for his kindness, patience, and sense of humor - so it wasn't odd that they would remember his first name with our last name. I decided that I would just eat my meal, forget about the holiday, and hold all the love that Brian and I share close in my heart and my thoughts.
Dinner was OK, but it wasn't Thanksgiving - it was just food. My parents enjoyed there meals' as did I, but it was just a meal. If I planned to acknowledge Thanksgiving, it would have been the worst Thanksgiving ever - make that 2nd worse. There was no joy at our table, no laughter. No extended family. No favorite recipes. There was barely any conversation. And I think that I am Thankful for all that wasn't.
I don't know if I'll be ready to have Thanksgiving next year or if I'll need more time. I don't know much anymore. I do know that my husband was an amazing man. Nobody loves and appreciated him more than I, but so many people saw how special he was, and remember him as a wonderful man. From Jeff at Commercial Services who cried with me as he shared his memories of Brian, to all of our friends, to his clients, to the staff at the Farm. Brian was special, and he touched so many people, and he is loved and remembered by so many.
Today wasn't Thanksgiving for me. It was just a Thursday, and I survived it. The tears didn't begin to flow until I had privacy. My parents went to sleep, and I can think, and remember, and cry, and blog, and know that as sad as I now am, I am grateful to have Brian's love, and Thankful for every second we had together. Even while intentionally avoiding the holiday, I somehow managed to focus on being Thankful for Brian's love, humor, kindness and a million other qualities before letting in the pain and grief.
Brian, I wish you were here so I could tell you how thankful and grateful I am for our love, marriage, friendship, and completeness. I would also like to thank you for leaving behind your wisdom. I can't see you, I can't hear you, but I still rely on your wisdom, strength, and compassion to get me through each day.
Wednesday, November 27, 2013
Thanksgiving
Tomorrow is the first Thanksgiving without him. Just a year ago he was here and we didn't know about the cancer. We made a turkey and our nieces and nephews were here and we had a great family Thanksgiving.
Just a year ago - a lifetime ago.
Just a year ago - a lifetime ago.
Friday, November 15, 2013
Maturing Grief
Grief ages like wine. With time it takes on more levels and more subtle tones. It starts out almost one dimensional - a flat and completely overwhelming pain. With time, it mellows but takes on so many nuances and subtle flavors that can sneak up on you and overwhelm you with their strength.
Those closest to grief can be overcome by it. It can so easily take control and overshadow everything in life.
I have come to believe that I am powerless over my grief, but no moral inventory can free me from this pain.
Those closest to grief can be overcome by it. It can so easily take control and overshadow everything in life.
I have come to believe that I am powerless over my grief, but no moral inventory can free me from this pain.
Sunday, November 10, 2013
Pain begets pain.
I had back surgery this week. It was an out-patient procedure and was, as far as back surgery goes, relatively minor.
I have lots of restrictions though. I have to rest, I can't lift more than five pounds. My only exercise or therapy is walking. I'm a little bit helpless. My parents flew in for three weeks to help me as I recuperate. I'm so grateful that they are here, but the person who I really wish could be here can't. I miss Brian so desperately, and this forced rest makes his absence to much more painful.
What's worse are the flashbacks to painful memories. For the first two days the pain at my incision site was quite severe - but then I thought of his incision and how awful it was for him. My parents are pushing me to eat more despite my loss of appetite, and that triggers me back to Brian's inability to eat for three and a half months, and it makes me cry. So I try to not let these painful memories overwhelm me. I imagine he is here, and healthy, and taking care of me. I imagine us laying down in bed together - my head on his shoulder while he holds me and comforts me through the physical pain' and I know that the physical pain is nothing compared to the emotional pain.
In some ways I'm doing better. My leg and back pain should be gone once I heal from surgery. My eye seems to be less painful. A new antidepressant to help me with my grief and new meds to help me sleep are making me less foggy and allowing my thinking to be more clear. That also makes the painful memories more clear and my vision for all my tomorrows more bleak.
This sadness is unbearable and while the pain changes, it doesn't go away. I will figure out how to live, but I will never heal from this pain and loss.
Nobody can understand. Others who have lost the love of their life can understand the intensity of the loss, but each loss is unique, and we are all alone with our pain. I think that Brian understood how awful this would be for me. He knew me like no one else ever could.
He is still my husband, the love of my life, my best friend. He will always be those things to me.
I have lots of restrictions though. I have to rest, I can't lift more than five pounds. My only exercise or therapy is walking. I'm a little bit helpless. My parents flew in for three weeks to help me as I recuperate. I'm so grateful that they are here, but the person who I really wish could be here can't. I miss Brian so desperately, and this forced rest makes his absence to much more painful.
What's worse are the flashbacks to painful memories. For the first two days the pain at my incision site was quite severe - but then I thought of his incision and how awful it was for him. My parents are pushing me to eat more despite my loss of appetite, and that triggers me back to Brian's inability to eat for three and a half months, and it makes me cry. So I try to not let these painful memories overwhelm me. I imagine he is here, and healthy, and taking care of me. I imagine us laying down in bed together - my head on his shoulder while he holds me and comforts me through the physical pain' and I know that the physical pain is nothing compared to the emotional pain.
In some ways I'm doing better. My leg and back pain should be gone once I heal from surgery. My eye seems to be less painful. A new antidepressant to help me with my grief and new meds to help me sleep are making me less foggy and allowing my thinking to be more clear. That also makes the painful memories more clear and my vision for all my tomorrows more bleak.
This sadness is unbearable and while the pain changes, it doesn't go away. I will figure out how to live, but I will never heal from this pain and loss.
Nobody can understand. Others who have lost the love of their life can understand the intensity of the loss, but each loss is unique, and we are all alone with our pain. I think that Brian understood how awful this would be for me. He knew me like no one else ever could.
He is still my husband, the love of my life, my best friend. He will always be those things to me.
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.
Sunday, September 29, 2013
Chemo
I know that the two rounds of chemotherapy that he had were horrible for him. The brain fog was frightening and disconcerting.
One of the meds that I'm no is a chemotherapy drug. I'm taking a tiny little dose - nothing like the dose a cancer patient would receive. When I take it, it is dreadful. It knocks me out for a day - I'm literally unable to accomplish anything, and I feel horrible.
It makes me more aware of how terrible it must have been for him. I know it is not the same drug, but if a tiny dose of poison can make me feel so badly, how must a cancer patient feel when they are injected with high doses of poison.
These questions only make things worse. I was there, and I witnessed his pain, but I clearly have no idea of what he felt or thought. He always said he was lucky to have time. Once he moved to hospice, he said that he was relatively comfortable.
I know that he never lied to me, but I can't help but think that he must have felt so much worse than he let me know, and this breaks my heart.
I felt so sick all weekend, and I missed him so much. Wondering about his pain only makes me feel worse. I know that there are no "what ifs", and these are questions that will never be answered, but the doubt has made my grief that much harder. I don't see any healing any time soon. The pain, loss, and questions only get worse.
One of the meds that I'm no is a chemotherapy drug. I'm taking a tiny little dose - nothing like the dose a cancer patient would receive. When I take it, it is dreadful. It knocks me out for a day - I'm literally unable to accomplish anything, and I feel horrible.
It makes me more aware of how terrible it must have been for him. I know it is not the same drug, but if a tiny dose of poison can make me feel so badly, how must a cancer patient feel when they are injected with high doses of poison.
These questions only make things worse. I was there, and I witnessed his pain, but I clearly have no idea of what he felt or thought. He always said he was lucky to have time. Once he moved to hospice, he said that he was relatively comfortable.
I know that he never lied to me, but I can't help but think that he must have felt so much worse than he let me know, and this breaks my heart.
I felt so sick all weekend, and I missed him so much. Wondering about his pain only makes me feel worse. I know that there are no "what ifs", and these are questions that will never be answered, but the doubt has made my grief that much harder. I don't see any healing any time soon. The pain, loss, and questions only get worse.
Saturday, September 28, 2013
Pain
I am in so much physical pain. My eye pain is terrible and my back and leg are only getting worse. I'm on so many medications that don't seem to be helping, and some of the side effects make things worse.
I lie alone in bed and try to handle my pain, but I feel so miserably alone. I look to his side of the bed, and know that he is gone. I am alone in my pain and in my grief, and it is overwhelmingly unbearable.
I think back to how amazingly strong he was in facing his pain and his mortality. I was there with him every day and night, but did that help? Was it comforting to have me there, or did my tears and fears make it harder for him? I honestly don't know, and the doubt is torturing me. I know how much he loved me, and he knews how much I love him, but I don't know if I did my best or if my best were good enough.
Did my being there lessen his pain? Am I just selfish in thinking that my pain would be less if he were here with me? It is hard to deal with grief when there is so much pain, and it is hard to deal with pain when there is so much grief. I really need help. I really need him.
I lie alone in bed and try to handle my pain, but I feel so miserably alone. I look to his side of the bed, and know that he is gone. I am alone in my pain and in my grief, and it is overwhelmingly unbearable.
I think back to how amazingly strong he was in facing his pain and his mortality. I was there with him every day and night, but did that help? Was it comforting to have me there, or did my tears and fears make it harder for him? I honestly don't know, and the doubt is torturing me. I know how much he loved me, and he knews how much I love him, but I don't know if I did my best or if my best were good enough.
Did my being there lessen his pain? Am I just selfish in thinking that my pain would be less if he were here with me? It is hard to deal with grief when there is so much pain, and it is hard to deal with pain when there is so much grief. I really need help. I really need him.
Thursday, September 26, 2013
Grief and Pain - a cruel combination
I try not to feel sorry for myself, but things are just too hard. On top of my grief and heartache I have chronic pain.
I've had eye pain for almost two years now. Ten doctors and thousands of dollars later, and the pain has only gotten worse.
Brian took care of me all through 2012. Driving me long distances to so many doctor appointments. Offering me strength and support when I had to get injections in my eye. Holding me and comforting me when the pain and frustration became too overwhelming.
My back problems and sciatica started getting really bad about a year and a half ago. The pain wasn't chronic, but I had several episodes of debilitating pain. Brian took care of me. He massaged my back when the muscles were so tight that he could see the knots under my skin. He catered to me when I was on bed rest with unbearable pain. He held me and offered his strength when the pain was so bad and I couldn't find relief.
I remember late last Fall apologizing to Brian for being a burden. It seemed that so much of his time was spent taking care of me. He kissed me and told me that I wasn't a burden. He said that he loved me and that taking care of me when I hurt was part of being in love. Then he said, "someday I'll be sick and will need help, and you will be there for me because you love me. We love each other, this is all part of the package."
I don't think that either of us could even conceive that in just a few months he would receive a diagnosis of terminal cancer, and that I would help take care of him for four months.
He was right, caring for the love of your life is not a burden. There is nothing I wouldn't have done for him. But, watching the love if your life dying - that is torture. And then he was gone and I could no longer take care of him, and the most unbearable grief became another facet of my pain.
My eye pain is now chronic and unbearable. I'm taking some strong meds, but we don't know if they will help. My back pain radiates down through my hip and leg. It has become chronic, and the orthopedist is recommending surgery.
Each day I take more prescription medications than anyone should take. The doctors don't know how to treat the eye so I'm taking low doses of a chemotherapy drug once a week, and popping codeine like candy. I was having a terrible time getting to sleep so they prescribed enough drugs to put me into hibernation. They are very effective in making me very sleepy. Then in one or two hours I'm awake. The drugs have dulled the pain, but my body aches, and my skin crawls, and I can't find a position that feels comfortable. And I lie alone in my king sized bed looking at the empty side where my Brian should be, and my heartache overshadows all my other pain.
Grief is cruel. Pain is terrible. Together they are torture. Everyone tells me to have hope - that I'll feel better soon, but two years of chronic pain is just too much. And in the dark quiet hours after midnight, when I lie alone on my side of our big king sized bed, I am reminded that my hope died with my husband.
I am not strong enough to survive all this. I am completely broken.
I've had eye pain for almost two years now. Ten doctors and thousands of dollars later, and the pain has only gotten worse.
Brian took care of me all through 2012. Driving me long distances to so many doctor appointments. Offering me strength and support when I had to get injections in my eye. Holding me and comforting me when the pain and frustration became too overwhelming.
My back problems and sciatica started getting really bad about a year and a half ago. The pain wasn't chronic, but I had several episodes of debilitating pain. Brian took care of me. He massaged my back when the muscles were so tight that he could see the knots under my skin. He catered to me when I was on bed rest with unbearable pain. He held me and offered his strength when the pain was so bad and I couldn't find relief.
I remember late last Fall apologizing to Brian for being a burden. It seemed that so much of his time was spent taking care of me. He kissed me and told me that I wasn't a burden. He said that he loved me and that taking care of me when I hurt was part of being in love. Then he said, "someday I'll be sick and will need help, and you will be there for me because you love me. We love each other, this is all part of the package."
I don't think that either of us could even conceive that in just a few months he would receive a diagnosis of terminal cancer, and that I would help take care of him for four months.
He was right, caring for the love of your life is not a burden. There is nothing I wouldn't have done for him. But, watching the love if your life dying - that is torture. And then he was gone and I could no longer take care of him, and the most unbearable grief became another facet of my pain.
My eye pain is now chronic and unbearable. I'm taking some strong meds, but we don't know if they will help. My back pain radiates down through my hip and leg. It has become chronic, and the orthopedist is recommending surgery.
Each day I take more prescription medications than anyone should take. The doctors don't know how to treat the eye so I'm taking low doses of a chemotherapy drug once a week, and popping codeine like candy. I was having a terrible time getting to sleep so they prescribed enough drugs to put me into hibernation. They are very effective in making me very sleepy. Then in one or two hours I'm awake. The drugs have dulled the pain, but my body aches, and my skin crawls, and I can't find a position that feels comfortable. And I lie alone in my king sized bed looking at the empty side where my Brian should be, and my heartache overshadows all my other pain.
Grief is cruel. Pain is terrible. Together they are torture. Everyone tells me to have hope - that I'll feel better soon, but two years of chronic pain is just too much. And in the dark quiet hours after midnight, when I lie alone on my side of our big king sized bed, I am reminded that my hope died with my husband.
I am not strong enough to survive all this. I am completely broken.
Saturday, September 21, 2013
Bereavement
Several people have suggested over time that I attend a bereavement group, and I've resisted. There are only two in town - one run by a religious organization whose beliefs do not match my own, and the other run by hospice. I didn't have a great hospice experience. There were some amazing nurses there who I really love, but the overall hospice experience was sad, lonely and isolating.
I was told about a new hospice bereavement group starting this week, and that all the participants had lost spouses. My first reaction was not to go - I really didn't see how hearing other peoples sad stories would make my experience any less painful or easier to digest - but, I need help, so I went.
It was pretty awful. There were 6 of us. 5 women, 1 man. I was the youngest of the group. We met for an hour and a half - just sitting around a table each taking a turn to tell our horribly sad stories - and every story was horrible and sad. And with each sad story, the social worker in charge would mutter, "wow" or "how hard" or some other equally unhelpful platitude. Did it bring me any comfort? No. Did it make me feel less alone? No. Did it bring up even more bad memories to bombard me all at once? Yes. All six of us were in tears.
Is this one of those, break them down and then we'll build them back up groups? I don't think so. It just hurt.
One of my more minor complaints about hospice is their insistence on using the word "journey". People in hospice aren't dying - they're "on a journey". Family members aren't "mourning" - they're "on a journey". Fuck the euphemisms! My husband died. I watched him die. He wasn't on a journey - he was dying and I witnessed it every day. My grief is not a journey - I don't know where it will take me. Perhaps it is a process.
Sitting in a room with other mourners was not easy or comforting. I have, in the past, suggested to people to seek out a bereavement group - and I still think it is probably a good idea - If and When someone feels ready. I'm not ready.
There are 5 more weeks of this group. We're supposed to talk about our losses. Bring in photos of our loved ones. Talk about moving forward. I don't know if I can do this. I have no idea yet whether or not I will go back.
I just know that it wasn't the right time for me to attend the meeting this week.
I was told about a new hospice bereavement group starting this week, and that all the participants had lost spouses. My first reaction was not to go - I really didn't see how hearing other peoples sad stories would make my experience any less painful or easier to digest - but, I need help, so I went.
It was pretty awful. There were 6 of us. 5 women, 1 man. I was the youngest of the group. We met for an hour and a half - just sitting around a table each taking a turn to tell our horribly sad stories - and every story was horrible and sad. And with each sad story, the social worker in charge would mutter, "wow" or "how hard" or some other equally unhelpful platitude. Did it bring me any comfort? No. Did it make me feel less alone? No. Did it bring up even more bad memories to bombard me all at once? Yes. All six of us were in tears.
Is this one of those, break them down and then we'll build them back up groups? I don't think so. It just hurt.
One of my more minor complaints about hospice is their insistence on using the word "journey". People in hospice aren't dying - they're "on a journey". Family members aren't "mourning" - they're "on a journey". Fuck the euphemisms! My husband died. I watched him die. He wasn't on a journey - he was dying and I witnessed it every day. My grief is not a journey - I don't know where it will take me. Perhaps it is a process.
Sitting in a room with other mourners was not easy or comforting. I have, in the past, suggested to people to seek out a bereavement group - and I still think it is probably a good idea - If and When someone feels ready. I'm not ready.
There are 5 more weeks of this group. We're supposed to talk about our losses. Bring in photos of our loved ones. Talk about moving forward. I don't know if I can do this. I have no idea yet whether or not I will go back.
I just know that it wasn't the right time for me to attend the meeting this week.
Tuesday, September 17, 2013
Happiness?
I knew this would be painful.
I knew I would be lonely.
I expected to be fearful.
I just never imagined it would be so much worse.
Grief is isolating. You lose more than your loved one. You lose your hope, your confidence, your sense of security. You lose the ability to be truly happy. People tell me that it will get better - that there will be happiness. I don't think so.
There will be laughter, there will be joy - but true happiness, I think, is a thing of the past. I think my happiness died with my husband, and now the most I can hope for is time without pain.
I knew I would be lonely.
I expected to be fearful.
I just never imagined it would be so much worse.
Grief is isolating. You lose more than your loved one. You lose your hope, your confidence, your sense of security. You lose the ability to be truly happy. People tell me that it will get better - that there will be happiness. I don't think so.
There will be laughter, there will be joy - but true happiness, I think, is a thing of the past. I think my happiness died with my husband, and now the most I can hope for is time without pain.
Wednesday, September 11, 2013
Time
Time has lost all meaning. Since he's been gone, I have no concept of time. The days march on and I seem to accomplish nothing. The nights are long and sleepless.
I get up, I go to work. The rest of my time seems to be consumed with tears and cleaning up pee. I walk the dog. I clean the litter box. I clean up pee from the floor. I feed the pets. I forget to feed myself. I sometimes get laundry done. I pay the bills. That's it. That's my life. Work, Pee, Tears, and Bills - not necessarily in that order.
It's already September. He's gone almost 5 months. I can't stand to think of the future. Things look so bleak. I'm not living - I'm surviving. I hate this existence. My life feels so empty.
I know what he wanted for me. We talked about it. He wanted me to be happy. He wanted me to enjoy life. He wanted me to live each day for both of us. I feel like a failure. I'm just not able to do that yet. He knew me so well - better than I know myself - and he knew that it would take time, years, for me to get there. I don't know if I ever will. It is too much to ask that I be happy. It is all I can do to just survive day my day.
Today is September 11th. A horrible day in our history. Before this year, I remembered 9-11 as the worst day of my life. The day when the world that I lived in changed forever. My sadness on that day was overwhelming. But now things are even more bleak. This loss is mine alone to bear. This pain has engulfed me. When my husband died, we both lost our lives, and I don't know how to build a new one without him.
I get up, I go to work. The rest of my time seems to be consumed with tears and cleaning up pee. I walk the dog. I clean the litter box. I clean up pee from the floor. I feed the pets. I forget to feed myself. I sometimes get laundry done. I pay the bills. That's it. That's my life. Work, Pee, Tears, and Bills - not necessarily in that order.
It's already September. He's gone almost 5 months. I can't stand to think of the future. Things look so bleak. I'm not living - I'm surviving. I hate this existence. My life feels so empty.
I know what he wanted for me. We talked about it. He wanted me to be happy. He wanted me to enjoy life. He wanted me to live each day for both of us. I feel like a failure. I'm just not able to do that yet. He knew me so well - better than I know myself - and he knew that it would take time, years, for me to get there. I don't know if I ever will. It is too much to ask that I be happy. It is all I can do to just survive day my day.
Today is September 11th. A horrible day in our history. Before this year, I remembered 9-11 as the worst day of my life. The day when the world that I lived in changed forever. My sadness on that day was overwhelming. But now things are even more bleak. This loss is mine alone to bear. This pain has engulfed me. When my husband died, we both lost our lives, and I don't know how to build a new one without him.
Tuesday, September 10, 2013
The Power of a Voice
I miss my husband's voice. The most beautiful sound ever.
When he was in hospice, I bought a digital voice recorder, and we recorded several conversations. The sound of his voice still makes my heart skip a beat, but listening to those conversations breaks my heart. He was still here, but we both knew we were nearing the end, and we spoke about it so openly. He was so brave, so strong, so pragmatic. I cried through each conversation. I cry now when I listen to them.
Maybe someday they'll make me smile. Maybe someday they'll be happy reminders rather than such painful ones. Somehow I doubt it.
Those recordings are priceless. I'm so glad that I have them, but listening to them is sweet torture. I miss him so so very much.
When he was in hospice, I bought a digital voice recorder, and we recorded several conversations. The sound of his voice still makes my heart skip a beat, but listening to those conversations breaks my heart. He was still here, but we both knew we were nearing the end, and we spoke about it so openly. He was so brave, so strong, so pragmatic. I cried through each conversation. I cry now when I listen to them.
Maybe someday they'll make me smile. Maybe someday they'll be happy reminders rather than such painful ones. Somehow I doubt it.
Those recordings are priceless. I'm so glad that I have them, but listening to them is sweet torture. I miss him so so very much.
Monday, September 9, 2013
Sigh
The only person who knows me well enough to understand the depth of my pain is gone. Such a hopeless cycle of loss and grief.
Sunday, September 8, 2013
What to say
Grief is pain. Grief is loneliness. Others say kind things; they mean well, but nobody can understand the loss. Everyone experiences loss, and it is always painful, but the way each of us experiences loss is as unique as our fingerprint.
What comforts one person doesn't comfort everyone, and any person's beliefs about death isn't universal.
Just hours after my husband died, a well meaning acquaintance told me that she was so sad for me, but so very happy for him because he was in a better place. At the time she didn't know that I am Jewish and that her well-intended words brought pain and not comfort. Other friends told me to take comfort in knowing he is looking over me - I don't believe that he is. Unlike others who "see" their loved ones in the sun, sky, wind and rain, I don't.
I don't know what happens after death. Is it the end, is there some sort of awareness, is there some kind of afterlife? All that I know is that the love of my life is gone. I've lost my best friend, my lover, my confident, my biggest fan, my most honest critic, my comforter, my teacher, my student, my advocate, my partner, my sun, my moon, my everything.
Sometimes well-meaning words cause pain. When someone is grieving, listen to them. Talk about their loved one - share memories. But don't assume that you understand their pain, and don't offer your opinion on why they are gone or what happens after death. The pain is all encompassing, and words misspoken can cut deeper than you realize.
Monday, September 2, 2013
The Screaming Silence
We lay together in the darkness
The quiet buzzing with sound -
A soft and steady beeping
The bubbling of the oxygen pump
A soft clicking from the wound vac
And the intermittent humming of the bed.
Below my cheek the pillow is damp from my own tears
My weight is balanced on one hip, the bed rail digs into the other.
Everything hurts
My head wants to explode
The pain is unbearable.
But he lies sleeping beside me
His skin so soft under my fingertips
The tiniest of snores - a beautiful sound
The rhythmic rise and fall of his ribcage reminding me that he is still here
Still alive
Still the man I love
And I pray that he is dreaming of a place that is safe and warm
And cancer-free.
The quiet buzzing with sound -
A soft and steady beeping
The bubbling of the oxygen pump
A soft clicking from the wound vac
And the intermittent humming of the bed.
My weight is balanced on one hip, the bed rail digs into the other.
Everything hurts
My head wants to explode
The pain is unbearable.
His skin so soft under my fingertips
The tiniest of snores - a beautiful sound
The rhythmic rise and fall of his ribcage reminding me that he is still here
Still alive
Still the man I love
And I pray that he is dreaming of a place that is safe and warm
And cancer-free.
I wrote that on February 11th. Just 2 days before we moved from the hospital to hospice. What I wouldn't give to go back there. It was a painful raw time, but he was still here. We were still together. I knew better than to pray for time - I just prayed for quality time. I knew better than to pray for a cure - I just prayed that he wouldn't suffer. I knew better than to ask for anything but for things to be as they were meant to be, and thankfully Brian was painfree for most if his illness.
But now, my pain is unbearable - and there seems to be no end in sight.
Brian - I miss you. I hope you knew how much I love you. I hope you knew how wonderful you were, and what a legacy you left - not just for me, but for the world. You were smart, kind, compassionate, giving, loving, funny - you were my sun and my moon - the air that I breathed. You brought joy, happiness, and contentment to my life, and I'm so grateful for your love. Maybe someday all those gifts will make me smile before they make me cry. Maybe.
Sunday, September 1, 2013
Pain
My Grief seems to know no boundaries. It is always there. Sometimes it hides behind a smile or a moment of real laughter, but it always returns quickly with such painful force.
Not a day goes by without tears and physical pain. The human body is not equipped for such overwhelming loss. It aches, and there seems to be no remedy; no relief.
In every quiet moment I feel I am fighting to survive this. It is exhausting. This is the other side of love. Only a love of such purity could cause a wound this deep.
People say, "give it time, it will get easier." I don't know how chronic pain can ever become easy. I don't know how devastating loss can every feel ok.
Not a day goes by without tears and physical pain. The human body is not equipped for such overwhelming loss. It aches, and there seems to be no remedy; no relief.
In every quiet moment I feel I am fighting to survive this. It is exhausting. This is the other side of love. Only a love of such purity could cause a wound this deep.
People say, "give it time, it will get easier." I don't know how chronic pain can ever become easy. I don't know how devastating loss can every feel ok.
Friday, August 30, 2013
Bad Day
Today was not an "anniversary day". It wasn't x months since y. It wasn't a birthday, or holiday, or celebration that made Brian's absence all the more painful - it was just a horribly bad day of sadness and tears. Today's memories did not bring smiles - they only heightened my pain. I know that Brian would have been disappointed in me today for not taking better care of myself, but sometimes the pain is too strong for me to fight off.
Brian, I miss you so much. I just ache. I love you.
Brian, I miss you so much. I just ache. I love you.
Thursday, August 29, 2013
Broken Heart
I knew that life would never be the same. I am coming to believe that a broken heart will never mend. Its body will always be crippled.
Tuesday, August 27, 2013
Journey
The first night we were in hospice, one of the nurses spoke about "Brian's journey". I wanted to punch her. He wasn't on a journey - he was dying. Destination nothingness.
Now people speak of my grieving as a journey. A journey where? To acceptance? To healing? This is not a journey. This is my life. This is a wound that will never heal; a loss that will never subside.
Please do not speak of my mourning as a journey. There is no eventual destination. This is my life, and the most I can ask is for the strength to endure.
Now people speak of my grieving as a journey. A journey where? To acceptance? To healing? This is not a journey. This is my life. This is a wound that will never heal; a loss that will never subside.
Please do not speak of my mourning as a journey. There is no eventual destination. This is my life, and the most I can ask is for the strength to endure.
Tuesday, August 20, 2013
Cancer Research
Today has been 4 months since Brian died. Needless to say it has been a difficult day.
Sunday, August 18, 2013
Pain and Tears
It has been almost 4 months since Brian died. The wound doesn't heal. It spreads and weeps a nasty puss that no one else can see. The days are long and painful. The nights so long and lonely. I crave the escape of sleep, but it is not granted. The prescribed meds no longer calm the physical and mental pain. My body hurts, my mind screams. Sleep is no refuge.
I cry each day as soon as I am alone - in the car or in the house. I can't pray at synagogue without more tears. My friends and family love and support me. I am blessed - but I am broken. I am loved but I am lonely. I am brave, but I am terrified. I am trying so so hard, but I am failing.
Brian - you are the love of my life. Your ashes are in a grave, and someday my body will lie beside yours. But we will never again touch or laugh together. I can't share the rest of my life with you. I promise to try to embrace each day and to live it for both of us, but right now I'm failing. My grief is too raw. I promise you I won't stop trying. My love for you goes beyond the grave - it is the one truth I never question. Thank you for loving me and for sharing the best years of my life.
Wednesday, August 14, 2013
Tragedy
My husband died at 48. His death was a tragedy to all those who knew him, and to all those who will never have the chance to know him.
He was the best person I have ever met. Not perfect, but his flaws were minor. He was kind, good, smart, giving and compassionate. His laugh was the most beautiful sound on earth, his smile the brightest.
This year has been the worst of my life. We spent January 1st watching TV. Him in bed, sick - not knowing what was wrong, and waiting for answers. Me by his side - worried, but believing that things would be ok.
Then on January 8th we got the horrible news, and from that day forward my life revolved around his illness. I spent every day and night with him at the hospital until February 13th when he moved to Hospice House. I stayed with him in hospice every day and night until April 20th when he took his last breath in my arms. And I have spent every day and night since trying to understand this incomprehensible loss, and trying to figure out how to live on without him.
Neither of us were perfect, but together we were. We were meant to be together, and we filled each others lives with love, laughter and happiness. Now, my life is filled with loss and fear. I know that the pain will subside, and I WILL somehow live on.
Today the reality of my life became clear. The best years of my life are behind me. My 9 years with Brian were the best years of my life. Now, at 49, I look to my future, and know that it will never be as bright, as happy, as wonderful as it was. With luck, I will live for 30+ more year, but I won't have the love, the joy, and the hope that I had with Brian.
How does one look to the future with joy and anticipation, when the best of life is behind you - when life seems more an obligation than a gift?
I have wonderful friends and family who I love, and who shower me with love and support. I don't take them for granted. But I don't know how to live with gratitude in the shadow of such tragic loss.
He was the best person I have ever met. Not perfect, but his flaws were minor. He was kind, good, smart, giving and compassionate. His laugh was the most beautiful sound on earth, his smile the brightest.
This year has been the worst of my life. We spent January 1st watching TV. Him in bed, sick - not knowing what was wrong, and waiting for answers. Me by his side - worried, but believing that things would be ok.
Then on January 8th we got the horrible news, and from that day forward my life revolved around his illness. I spent every day and night with him at the hospital until February 13th when he moved to Hospice House. I stayed with him in hospice every day and night until April 20th when he took his last breath in my arms. And I have spent every day and night since trying to understand this incomprehensible loss, and trying to figure out how to live on without him.
Neither of us were perfect, but together we were. We were meant to be together, and we filled each others lives with love, laughter and happiness. Now, my life is filled with loss and fear. I know that the pain will subside, and I WILL somehow live on.
Today the reality of my life became clear. The best years of my life are behind me. My 9 years with Brian were the best years of my life. Now, at 49, I look to my future, and know that it will never be as bright, as happy, as wonderful as it was. With luck, I will live for 30+ more year, but I won't have the love, the joy, and the hope that I had with Brian.
How does one look to the future with joy and anticipation, when the best of life is behind you - when life seems more an obligation than a gift?
I have wonderful friends and family who I love, and who shower me with love and support. I don't take them for granted. But I don't know how to live with gratitude in the shadow of such tragic loss.
Monday, August 5, 2013
Fear
It has been three and a half months since my love took his last breaths. I still have trouble accepting that he is gone, but my life is somehow moving forward without him.
I am so lucky to have so much support. I have the most amazing friends and wonderful family, and I know that I am not alone. My friends are there for me, they check up on me, they take me to my doctor appointments, they are amazing, and I love them. Still, when I come home, I am engulfed with loneliness and fear. I am hit with the reality that the one person who always loved me, supported me, helped calm my fears, and believed in me is gone. It is terrifying.
It is difficult to have to take on all the responsibility of a household. To know that if I don't do things they won't get done, but it is terrifying to have to face my fears alone.
I'm having some medical issues - nothing major - nothing like he had to endure, but I'm scared. He would take me to the doctor. He would hold my hand. He would hug me and make everything ok. Without him, I'm afraid to live, and I'm afraid to die.
I know that my family and friends are here for me. I know that they will take me to the doctor, will hold my hand or hug me when I'm scared; I know that they'll be there for me. But he KNEW me as well as I know myself, and he is gone.
He wanted me to be happy. He wanted me to be brave. He wanted me to live without fear. I'm really trying, and I really do feel like I am being brave - but live without fear? How am I going to manage that?
I am so lucky to have so much support. I have the most amazing friends and wonderful family, and I know that I am not alone. My friends are there for me, they check up on me, they take me to my doctor appointments, they are amazing, and I love them. Still, when I come home, I am engulfed with loneliness and fear. I am hit with the reality that the one person who always loved me, supported me, helped calm my fears, and believed in me is gone. It is terrifying.
It is difficult to have to take on all the responsibility of a household. To know that if I don't do things they won't get done, but it is terrifying to have to face my fears alone.
I'm having some medical issues - nothing major - nothing like he had to endure, but I'm scared. He would take me to the doctor. He would hold my hand. He would hug me and make everything ok. Without him, I'm afraid to live, and I'm afraid to die.
I know that my family and friends are here for me. I know that they will take me to the doctor, will hold my hand or hug me when I'm scared; I know that they'll be there for me. But he KNEW me as well as I know myself, and he is gone.
He wanted me to be happy. He wanted me to be brave. He wanted me to live without fear. I'm really trying, and I really do feel like I am being brave - but live without fear? How am I going to manage that?
Saturday, August 3, 2013
Quiet
Grief sucks. It is something you can't describe or explain. It rears its ugly head at the most unexpected times.
I think the hardest part is realizing that my home is now just a house. It used to be a refuge. It was filled with so much love and laughter. There is no laughter in this house anymore. It's just a building - quiet and sad.
I think the hardest part is realizing that my home is now just a house. It used to be a refuge. It was filled with so much love and laughter. There is no laughter in this house anymore. It's just a building - quiet and sad.
Saturday, July 20, 2013
It is up to us.....
"It is up to us
to hallow Creation,
to respond to Life
with the fullness of our lives.
It is up to us
to meet the World,
to embrace the Whole
even as we wrestle
with its parts.
It is up to us
to repair the World
and to bind our lives to Truth.
Therefore we bend the knee
and shake off the stiffness that keeps us
from the subtle
graces of Life
and the supple
gestures of Love.
With reverence
and thanksgiving
we accept our destiny
and set for ourselves
the task of redemption."
Author: Rami M. Shapiro
to hallow Creation,
to respond to Life
with the fullness of our lives.
It is up to us
to meet the World,
to embrace the Whole
even as we wrestle
with its parts.
It is up to us
to repair the World
and to bind our lives to Truth.
Therefore we bend the knee
and shake off the stiffness that keeps us
from the subtle
graces of Life
and the supple
gestures of Love.
With reverence
and thanksgiving
we accept our destiny
and set for ourselves
the task of redemption."
Author: Rami M. Shapiro
Wednesday, July 17, 2013
The voice of pain
I'm still surprised at myself for writing on the web where anyone can read this. I'm not publicizing this blog, but someone will stumble upon it. I'm not writing for sympathy or advice. I'm writing for my own sanity. I'm writing so there is an outlet for all my pain, and maybe by giving that pain a voice, I can find a way to live with it.
Each day is difficult. The tears come every day; not just tears, but uncontrolled hysteria. And when it finally dies down, there is no resolution or acceptance.
There is nobody to be angry at. There is no one to blame. There is no comfort yet in memories, in religion, in each new sunrise. Each day is a reminder of my loss.
Each day is difficult. The tears come every day; not just tears, but uncontrolled hysteria. And when it finally dies down, there is no resolution or acceptance.
There is nobody to be angry at. There is no one to blame. There is no comfort yet in memories, in religion, in each new sunrise. Each day is a reminder of my loss.
Tuesday, July 16, 2013
A blog?
I didn't think I would blog about this. It's private, it's personal, it's painful. But I'll lose my mind if I don't somehow process my feelings, and writing seems like the best way. This isn't going to be easy.
My marriage was perfect. My husband wasn't - he had his flaws, and I loved him completely and unconditionally. In 7 years of marriage, we never fought. We had disagreements, but they always ended in laughter. Together, we were amazing. We had the sort of love that inspires books and movies - though we as individuals were quite ordinary.
He completed me. He brought me happiness. He was my biggest fan, and my most honest critic. He loved me despite all my faults and frailty. He taught me to face my fears, to speak my mind, to be myself. He thought I was beautiful. He made me feel safe.
Life was wonderful. And then, it wasn't.
The nurse called me back to the consultation room where I waited for the surgeon. He came in, pulled up a chair, put his hand on my knee and said, "It's cancer, and it's advanced."
I asked, "Is it operable?"
"No."
I asked, "Chemo?"
"No."
I asked, "Are you telling me that my husband is dying?"
"Yes."
He patted my knee, said "I'm sorry", and left the room. And just like that, life as I knew it ended.
For five and a half weeks, I stayed with him in the hospital. Sleeping on a cot. Running home for an hour most days to "take care of things", and racing back to his side.
It was a nightmare. Two major surgeries. 7 procedures requiring general anesthesia. A sepsis infection. Two rounds of chemo. A perforated stomach. A blood transfusion. The failing of his GI system. The inability to process any foods, and the restrictions of a liquid diet. One setback after another. Tubes, and bags, and discomfort. Fluids and smells. Pain and the disorientation of "chemo brain".
He took it all like a champ. He kept his sense of humor. He maintained his gratitude. He accepted what I could never accept.
I cried, I screamed, I prayed. I held his hand when they changed his wound dressing, and I hit the morphine button to try and alleviate his pain. I held my tears when I saw what they did to his body, only giving into hysteria when he was sleeping. I helped him do the things he could no longer do for himself - brought him beverages, bathed him, held the bucket when he vomited and the urinal when he needed it.
His doctors were wonderful. The nurses were more wonderful. They treated him with respect and compassion. They hugged me when I cried. They tried to make the nightmare more bearable, but of course they failed.
Every time we had a tiny glimmer of hope - not for a cure, but for more time - it was dashed. I wanted to bring him home, but the ruptured stomach made that impossible. So, when the harsh reality that we couldn't buy, borrow, or steal more time came, we moved to hospice house.
I took my 48 year old husband to hospice house. It was unthinkable. That afternoon the social worker asked, "how do you feel about this move" in her perky social worker voice. I replied, "I'm taking my husband somewhere to die. How the fuck am I supposed to feel?" That was my last conversation with the social worker.
So we moved to hospice. And the room was large, and his bed was more comfortable, and the setting was more restful and serene. And I hated it. I didn't want to be there. We were moving towards death.
And then the strangest thing happened. He started to get better. Outside of the hospital, he was actually able to rest. There were no more invasive tests, surgeries or chemo, and he was able to regain strength. Not enough to go home, but enough to have some "good time".
A few days after we moved to hospice, one of his doctors went on vacation for two weeks. When he came back he blurted out, "I'm so happy to see you, I thought you would be dead.". But no - he lived.
He made jokes. He thanked his caregivers. He started to write his own obituary. He comforted me. He gave me advice. He loved me. And I loved him.
I hope that I made that time easier for him. I felt so inadequate. I wanted to save him. I wanted to heal him. I wanted so much to bring him home. There was so little that I could do for him. I tried to care for him, but until the end he still cared for me.
We stayed together in hospice house for 9 weeks and two days. The last three days were hell. I knew he was going. He knew he was going. It was unbearable. The last night was excruciating. I knew we were near the end. I knew what his wishes were, and I didn't want him to suffer. Pushing that morphine button was torture. I knew it was helping him. I knew it was keeping him from pain. I knew it was killing him.
His very last words were "love you". For the last hour, I climbed into his bed and held him in my arms. In the end, he squeezed my hand, took two more breathes and was gone. My beloved was gone.
It has been almost three months. Everyone tells me that it will take time. That with time the pain will subside. That with time, I'll find some new normal. That I will be happy again. Maybe. But, with his last breath, my life ended. I didn't die, but my world was destroyed.
I have an incredibly supportive family. I have the most amazing and supportive friends. And yet, I come home every night and I cry. I try to heed his advice. I try to be happy, I try to live without fear. I try not to waste the life that I still have. I feel an obligation to live because he wasn't given that opportunity. In my grief and despair, I feel that I am failing.
The pain doesn't stop. The nightmare doesn't end.
My marriage was perfect. My husband wasn't - he had his flaws, and I loved him completely and unconditionally. In 7 years of marriage, we never fought. We had disagreements, but they always ended in laughter. Together, we were amazing. We had the sort of love that inspires books and movies - though we as individuals were quite ordinary.
He completed me. He brought me happiness. He was my biggest fan, and my most honest critic. He loved me despite all my faults and frailty. He taught me to face my fears, to speak my mind, to be myself. He thought I was beautiful. He made me feel safe.
Life was wonderful. And then, it wasn't.
The nurse called me back to the consultation room where I waited for the surgeon. He came in, pulled up a chair, put his hand on my knee and said, "It's cancer, and it's advanced."
I asked, "Is it operable?"
"No."
I asked, "Chemo?"
"No."
I asked, "Are you telling me that my husband is dying?"
"Yes."
He patted my knee, said "I'm sorry", and left the room. And just like that, life as I knew it ended.
For five and a half weeks, I stayed with him in the hospital. Sleeping on a cot. Running home for an hour most days to "take care of things", and racing back to his side.
It was a nightmare. Two major surgeries. 7 procedures requiring general anesthesia. A sepsis infection. Two rounds of chemo. A perforated stomach. A blood transfusion. The failing of his GI system. The inability to process any foods, and the restrictions of a liquid diet. One setback after another. Tubes, and bags, and discomfort. Fluids and smells. Pain and the disorientation of "chemo brain".
He took it all like a champ. He kept his sense of humor. He maintained his gratitude. He accepted what I could never accept.
I cried, I screamed, I prayed. I held his hand when they changed his wound dressing, and I hit the morphine button to try and alleviate his pain. I held my tears when I saw what they did to his body, only giving into hysteria when he was sleeping. I helped him do the things he could no longer do for himself - brought him beverages, bathed him, held the bucket when he vomited and the urinal when he needed it.
His doctors were wonderful. The nurses were more wonderful. They treated him with respect and compassion. They hugged me when I cried. They tried to make the nightmare more bearable, but of course they failed.
Every time we had a tiny glimmer of hope - not for a cure, but for more time - it was dashed. I wanted to bring him home, but the ruptured stomach made that impossible. So, when the harsh reality that we couldn't buy, borrow, or steal more time came, we moved to hospice house.
I took my 48 year old husband to hospice house. It was unthinkable. That afternoon the social worker asked, "how do you feel about this move" in her perky social worker voice. I replied, "I'm taking my husband somewhere to die. How the fuck am I supposed to feel?" That was my last conversation with the social worker.
So we moved to hospice. And the room was large, and his bed was more comfortable, and the setting was more restful and serene. And I hated it. I didn't want to be there. We were moving towards death.
And then the strangest thing happened. He started to get better. Outside of the hospital, he was actually able to rest. There were no more invasive tests, surgeries or chemo, and he was able to regain strength. Not enough to go home, but enough to have some "good time".
A few days after we moved to hospice, one of his doctors went on vacation for two weeks. When he came back he blurted out, "I'm so happy to see you, I thought you would be dead.". But no - he lived.
He made jokes. He thanked his caregivers. He started to write his own obituary. He comforted me. He gave me advice. He loved me. And I loved him.
I hope that I made that time easier for him. I felt so inadequate. I wanted to save him. I wanted to heal him. I wanted so much to bring him home. There was so little that I could do for him. I tried to care for him, but until the end he still cared for me.
We stayed together in hospice house for 9 weeks and two days. The last three days were hell. I knew he was going. He knew he was going. It was unbearable. The last night was excruciating. I knew we were near the end. I knew what his wishes were, and I didn't want him to suffer. Pushing that morphine button was torture. I knew it was helping him. I knew it was keeping him from pain. I knew it was killing him.
His very last words were "love you". For the last hour, I climbed into his bed and held him in my arms. In the end, he squeezed my hand, took two more breathes and was gone. My beloved was gone.
It has been almost three months. Everyone tells me that it will take time. That with time the pain will subside. That with time, I'll find some new normal. That I will be happy again. Maybe. But, with his last breath, my life ended. I didn't die, but my world was destroyed.
I have an incredibly supportive family. I have the most amazing and supportive friends. And yet, I come home every night and I cry. I try to heed his advice. I try to be happy, I try to live without fear. I try not to waste the life that I still have. I feel an obligation to live because he wasn't given that opportunity. In my grief and despair, I feel that I am failing.
The pain doesn't stop. The nightmare doesn't end.
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