On The Day That I Died

It was cold.

The sun shone brightly

The sky was blue with deceit 

-an illusion of calm.

We hung our hopes on a low hanging limb,

filled with the promise that Spring would soon bud.

But the limb snapped.

The canopy that shaded us from our fears was destroyed.

The warmth we sought betrayed us.

It beat down searing, scorching,

consuming that which had been beautiful 

-giving life to something dark and destructive.

Hope was cruel,

allowing us to believe that fate could be altered. 

It was cold.

The sky was blue,

on the day that I died.

Heart

It swells with love until it risks bursting..

A rush to the brain;

A glow on the cheek;

A warmth between the legs.

It fills the chest 

Squeezes out the emptiness

Makes things like "forever" seen real

Until...

The body goes cold.

How much loss can one heart bear?

How can it be put back together?

What happens when the glue chips away

And the cracks spread wide?

There is no limit to love

But the heart is human - 

Frail.

How many times can it be broken and repaired 

before it can no longer hold onto love 

and can only, barely, continue to beat?

Want

I don’t even know what I want in life. I don’t want to be alone, but I don’t want to settle. I would like to meet someone, but I don’t want to date. I don’t know if I will ever want to re-marry, but I would love to have a partner again.

Do I want a husband, a lover, a friend with benefits?

I want trust and intimacy of mind and body. I want someone to fuss over, and someone to fuss over me. I want occasions for celebration, a shoulder to cry on, a person to grow with.  I want to feel like I matter. I want to feel like I am living again rather than just going through the motions.

Actually, that sounds like I do know what I want. I just don’t know how to have it anymore. I’m scared to try; I’m scared not to try.

I lost my first husband to drugs. I lost my second husband - the love of my life - to cancer. I don’t want to lose more. I don’t want to put my fragile, glued-together heart someplace where someone can crush it by not wanting me. I don’t want my heart to be destroyed by loving another man who I can lose.

I want love, sex, real companionship, support, responsibility, accountability and more. I want a life that is full, shared, and honest. I’m scared to have that and I’m scared that I may never have it again.

Need Him

Five years ago my Brian had surgery. We thought they were looking for a bowel obstruction. We were prepared for a cancer diagnosis, but not for a stage four - no options - terminal diagnosis.

Five years is a long time. I thought I could get through my day without focusing on five years ago. I didn’t focus on five years ago, but it had me. I fought years from the time  I got out of bed. It was a lousy day.

I went to work and was bombarded with requests. That’s my job, and I like to help, but not when I’m given just a hint of the story to figure out what needs to be done. People want things done now, but won’t take the time to clearly state what they need, so they waste my time doing detective work. I miss Brian. Brian knew how to communicate clearly. Brian knew how to say please and thank you. Brian made the people around him feel appreciated and never took them for granted. Is it so wrong to want to feel appreciated at work? Is it so wrong to feel sad on the fifth anniversary of my husband’s death sentence?

My eye has been very painful for three weeks. It makes it really hard to stay cool. It makes me anxious and on edge. Chronic pain exhausts me and I just crave sleep. I had a 1:00 doc appt today. My pain has been bad and unrelenting, so I thought my retinal edema would be bad. It far surpasses my expectations, though it did confirm that my pain and vision problems are real. Sat at the doc four four hours waiting for authorizations. Gave me lots of time to remember the last time my eye scan was so bad. It was Jan 2012  - first time I needed an interoccular injection. I was terrified, but Brian was right there giving me support. Today I was alone, and it was so lonely. The shots aren’t so terrible, but the anxiety before the shot is always bad. I always feel panicky, and I wanted Brian there with me. I was sad, then mad, then depressed to be sitting there alone. I got the inplant, but have never had the itching and burning in my eye after. The one eye was tearing nonstop, and the stinging burning pain lasted two hours.

Five pm - sun is going down, both eyes are dilated, one eye is in post injection pain and waterworks, I’m alone, sad, depressed, frustrated, grieving, I’m pissed off that I’m there alone. Spent four hours trying to get authorization paperwork, but ended up having to pay out $2200 anyway. Then I have to drive home at dusk with seriously compromised vision. I had no business being behind the wheel. He used to take care of me. I needed help, but couldn’t have it. I’m so sad, I’m so lonely. I need help. This condition is very painful. We don’t know what causes it. We can treat the symptoms but it is thousands of dollars every two months and treatment is invasive. It is painful, but others with similar symptoms don’t have the dibilitating pain I do. We inject implants in my eye and we flood my body with biological medication. It costs over $3000 each treatment and it is invasive, and I don’t know if it is right or worth it. I need my partner to help me figure it out. I need my partner to lean on in my pain. Today I didn’t have him, but I did have haunting memories of being told that he would soon die. I remember having to tell him that he was dying. I remember how we both tried to be strong for the other.

I’m alone. I miss him. I’m in pain. I need his strength and support. It is so hard - this life alone.

Mothering Grief

Yesterday I posted this to a widow’s group in Facebook:

“Five years ago today, Brian and I spent in the ER. We thought they would admit him and schedule surgery to remove his pancreas. CAT scan showed a healthy pancreas.

Five years ago today, Brian and I learned the word ascites.  The doctors didn’t tell us they suspected cancer, but that’s when we both started to think it was likely. He wasn’t diagnosed with cancer until Jan 8, but I suspect all his doctors knew it was cancer. We were ready for the cancer diagnosis, but not for “terminal”, “stage 4”, and “no treatment”.

It would be so easy to allow myself to fall into despair, but that would disappoint him. He has been gone for almost five years, and I have to stop nurturing my grief. Nobody around me understands that this deep pain will never go away, and I will forever miss him and our life together, but I know that I can continue to live. Life isn’t as rich, and it isn’t as fun, but it is a gift that I have and that he was denied.

I recently shared the attached poem that has been so meaningful to me. At one, two and maybe even three years out, this poem would have pissed me off. Now, approaching five years, the poem speaks to me. I can hear his voice in it.  I carry my grief with me, but I must stop nurturing it. I must stop allowing it to dominate my life. I most focus on life, and let my grief fend for itself. It isn’t easy, but time is making me feel like it is possible.

Five years ago today we were scared and clinging to a hope that failed us. Today, I have survived the worst of what life could deal me. Today I no longer fear loss because I have lost what was most important. Today I think maybe I can stop carrying me grief, and let it follow me on its own.

Wishing us all strength for 2018.”

Here is the poem:


http://lodestarquarterly.com/work/397/

It is hard to separate the grief of life from the grief of death, but this is where I am.  I can no longer blame my grief on Brian’s death. It is time to own it. I hope I can do so in 2018.

Let's not be Graceful in our Grief

Recently there were ads on the radio for a weekend seminar offered by the Sisters of Something or Other. It was called "Graceful Grieving". I held off on commenting because since Brian died I seem to be the Lady of Perpetual Anger, and I wanted to think about why this seminar upset me so much.

I think it is a huge disservice to try and instruct people to grieve gracefully. In fact, I think we need to do the opposite. Grief is raw, and messy, and anything but graceful. To grieve gracefully is to stifle your feelings for the comfort of others. Why should anybody do that?

Why should a mourner smile politely and hide the tears for private moments. Why should a mourner say "thank you" and offer a sweet if phony smile when someone says "he's in a better place", or "God had a plan", or "this will make you stronger"? Grief is hot, wet, and smelly. Grief is loud and grating. Grief is primal screams, and collapsing to the floor. It is forgetting to shower and brush teeth. Grief is tears, snot, vomit and diarrhea. Grief is private pain, but public spectacle.

How offensive that anyone would instruct anyone else on how to mourn gracefully?

When Brian was dying, I tried to shield him from my grief. I couldn't understand what it must have felt like for him to be dying, and I didn't want to burden him with my pain - a pain that he couldn't make go away. I'm sure I failed miserably. I cried when he slept. I left his room when I had to collapse to floor. I stifled my screams. I tried to shower, dress, and eat. I tried to show him that I would be okay. He knew that I wouldn't be ok for a long time.

Then he died, and nothing was ok. I showered and dressed in a suit and went to his memorial. I stood and received "guests" after the service. I sent thank you notes. I told people that I was "fine". I listened to everyone tell me that I was strong.

No.

I wasn't strong. I'm not strong. I continue to breath because that is what you do. Because you live, and you learn to live in agonizing pain. You learn to hide it until private moments, but it never goes away. It becomes easier to live with, but the pain and loss are always there. Every sad occasion that you can't share; every happy accomplishment that you don't celebrate; every holiday that you attend alone; everything new that happens in a world without them hurts - but we are expected to be graceful and grateful.

I am so grateful for the time I had with Brian, but I don't want to be graceful. I wish I could go back a few years and allow myself to fully experience the pain. I wish I could scream in public, tear my clothes, rant at God, curse at others' happiness. I wish I could be ugly, loud and offensive. I wish I could be honest with the force of my pain, because maybe then it wouldn't be so hard now. Maybe had I been allowed to be weak, ugly and selfish then, I wouldn't have to feel so alone in my pain now.

Perspective

Grief doesn't get easier. We learn how to live with it, but it doesn't ease, we don't heal, we don't move on - we somehow live. Even after four years it isn't easy. It is a continual struggle to see good in a present that will never be as complete and joyous as the past.

Something happened in the past week, that has really helped me to form a new perspective. Something that I wish I could talk with Brian about. Something that feels really profound.

Brian was the love of my life. Losing him will always be the greatest heartache of my life. Loving him, I believe, will always be my greatest joy. I am blessed to have many family and friends that I love. One person stands out, and that is my niece, Denise. She is permanently in my heart in a way that I can't explain. She is my niece by marriage - Brian's niece - but she is my family. I have no children, and she is the closest to a daughter that I will ever have. I hurt when she hurts, I am delighted with her accomplishments. I want the world for her.

Denise's mom was Brian's sister. She died of breast cancer three years before Brian died of appendicial cancer. She didn't have it easy. She was on active chemo for over 11 years, but this lady had a perspective that was beautiful. She said that everyone had something about themselves that they don't like - some people don't like their hair, or their weight, or their fears - she didn't like her cancer, but she was going to live with it. She didn't "fight cancer"; she just chose to live. And despite what the cancer and the chemo did to her body, she lived as best as she could. We had some private time to speak a few days before she died, and I got to thank her for showing me what it really means to live on one's own terms. I wish I had had more time to know her better, but I loved her and I miss her.

Denise and Brian had a special relationship, and it didn't take long for me to fall in love with her. She and her cousins are the greatest inheritance that Brian left me. Denise has been there for me. She was there with us when Brian died. I have a bond with her that is unlike anything I have with anyone else on this earth.

So when she told me a few months ago that she had an amazing opportunity at work, I was so happy for her. When she was selected from a national team for a promotion that would move her for four years to the other side of the world, my heart swelled with pride and joy for her. I would be lying if I didn't selfishly feel some sadness that she would be so far away, but I knew what this opportunity meant for her, and I couldn't be more proud.

Then, two weeks ago she called me and told me that she felt a lump in her breast and was going to see the surgeon. The fear that I felt was unlike anything I had felt before. I felt fear when Brian was diagnosed, but I hadn't lived through his illness yet. I hadn't seen close up what surgery and chemo does. I hadn't seen how cancer can eat a person until there is nothing left to eat. I now understand cancer, and the thought that those things might happen to my Denise, filled me with a fear and rage that were consuming. Her mother died of cancer. Her uncle died of cancer. Her grandmother survived cancer. With this family history, this wasn't just a scare - it was a moment of harsh realities.

They scheduled her for biopsy the next week. They took five cores. We didn't talk after the biopsies. We texted. She needed to turn off the phone from the world. I needed to be supportive but hide my fears. They told her she would have results by the end of the week. So I waited, and I prayed like I have never prayed before.

I believe in God, and I believe in the power of prayer, but my "idea" of God is unlike that of most organized religions. I don't believe in God as an entity that controls our individual fates. I don't believe that people get sick or not because some god decides that. I don't believe that prayer can cause or prevent illness or death. I was never angry at God because my Brian died. To me, God is more of an idea - more of the unembodied embodiment of what is good and true and right in the world. God is the belief in the goodness of people and a recognition of the beauty of life. God is the way things are supposed to be.

On Friday morning I was driving to work, and I couldn't stop the tears. The thought of what could be was so unfair and so terrifying. I cried and I raged, and I cursed at God. I thought if the biopsies come back positive, then there is no God. Then there is no point in prayer, or hope. Then the world is just unfair. And then, as quickly as this rage had escalated, I had a thought. If Denise did have bad news and I blamed God, would I show corresponding appreciation and gratitude if the biopsies came back negative?

Suddenly, I was a hypocrite, because I knew that I wouldn't. As grateful as I would be, I probably would not have expressed that gratitude to the order of goodness and rightness in the world. And that stopped me in my tracks. I have been living with this horrible sadness since Brian died. I know that it will never go away, but I need to focus more on gratitude. I need to feel appreciation that I experienced a love so strong that most people will never know - that even though I now have a profound sadness, I was so lucky to experienc true happiness -  that despite cancer, and poverty, and politics and tragedy there is good in the world, and that life itself is a miracle that I can't take for granted. It's ok for me to feel sad, but only if I recognize both sides of the coin.

On Saturday morning I got a text. All of the biopsies were negative. I immediately called Denise and we laughed and cried. I cried all day - happy tears, because despite how unfair life is, sometimes things end up exactly how they are supposed to be. I cried because someone who I love will be able to take an amazing promotion, and move to the other side of the world for four years, and experience life - and I will get to share that experience with her.

Denise and I spoke this morning, and we laughed, and I cried some more and we talked about all this. We talked about how real the fear was and how amazing the relief is. We talked about how important it is to appreciate the good things because they can be so fleeting.

Bad things are going to happen to me and to the people I love. There will be more fear and loss, but I have been so wrapped up in my fears and losses that I haven't been able to appreciate the gifts that I still have. No, my present is neither as full nor as happy as my past, but I still have life and love and wonder. I hope I can remember to keep that in my consciousness. I am truly thankful for the beauty of life, and to know that while life is not fair, sometimes things turn out exactly how they should.