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.

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.

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.

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. 

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.

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.

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. 

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.

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.

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.

 

 

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.

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.