Tuesday, July 28, 2015

Things I Want my Daughter to Know

I am the Mother of one daughter, Catherine. She was born on a lovely March day after many years of infertility, miscarriages, and dashed hopes and dreams. It was clearly the best day of my life.

But I am a mother just like you. I have other things I do with my day. I am busy running errands, cleaning up messes, dealing with laundry and sometimes trying to read. I am also preoccupied with many other, seemingly unimportant things and I am certainly not perfect. I do try to be a good mom, but I know that sometimes I fall short of that mark as well. But my life is full and happy, and for that I am grateful.

One of the ways that I fill my life, besides being a mother and wife, is by being a hospice nurse. I did not actively seek out this job, it sort of found me. I have been a nurse, in one form or another, for 30 years now. I had never worked in the hospice field before, but it had touched my life. My own mother had hospice in 1997 when she died, as did my young cousin, who died much too young in 2001.

So I became a hospice nurse. Most of my patients are seniors. The ending of their lives has touched me for sure, although they seem to follow the normal course of the universe.  Many had full lives and were well loved. I was saddened, but felt that I was helping them and their families cope and I could go home and continue my life without too much distress. Things were ok. Then one day, I received the name of a patient to see at a large teaching hospital in Boston. When I looked at the chart, I did not see just a new patient to admit. I only saw myself.  A woman, age 42 at the time. The mother of a 4-year-old daughter. She had struggled for years with infertility and this child was a gift. She was diagnosed with cancer during her pregnancy, but refused treatment as not to harm her child. She fought hard against the disease. But in the end, it had won.

I went to see her with a feeling of dread. This is one of my worst fears, to leave my daughter. As I entered the room, I could sense her full presence. Her daughter was playing in the room, talking to her, like any normal child would. Her unresponsive mother could not respond verbally, but I definitely sensed a charge in the room, a warmth. I cannot describe it, but it was there. When the patient’s sister came to take the child to lunch, all that energy left with her.

I sat there with the patient, she was comatose. I told her what a beautiful daughter she had and how proud she must be of her. It was hard for me to be there, I wanted to run away. I held back my tears until I got to my car, then I couldn’t stop crying. I cry now still, years after her death, as I write this.

I had to see her many more times, as we see patients who are hospitalized every day. Each day was difficult for me, but I had to remember that I am the one having the good day. There is no reason for me to feel sorry for myself. All my energy needs to be directed to the patient and the family.

I brought the patient’s daughter some princess stickers at one visit. She proceeded to place them all over her “sleeping” mother. The mother looked ethereal lying there. She still had all her wonderful, beautiful thick and flowing red hair. The floor nurses had lovingly brushed it. She did not look as though she were ill. She did indeed look as though she were only sleeping.

I stayed longer than my normal visits when I went to see her. I sat in the chair next to her and talked.  I talked about her daughter, how she was the same age as my daughter.  I talked about her sister and mother who would be raising her daughter, how wonderful they were.  How I wish I still had my mom.  How I had always had wished for a sister.

I talked to her about my own daughter.  I talked as though we were friends just chatting. Her sister and mother were sometimes in the room when I came, and we all sat around the bed like old friends.  They told me how my talks with her seemed to calm her.  The nurses would call me when she was agitated and I would try to come, even on my time off. 

When I returned home after these visits, I would see my daughter, but with new eyes.  I thought about what I needed to share with her now that was truly important.  We all think we have so much time.  But we don’t.  So I took the time to read the story.  I listened more patiently when she told me a story.  I hugged her more.  I smelled her hair.  We went for longer walks.  I pushed her longer on the swing.

I saw her thorough my patient’s eyes, and my eyes opened more than I could have ever imagined.   

This lovely patient, who taught me so much, without ever speaking a word, died quietly a few days later. I read about it in the paper and heard it in report.  She died at midnight on the cusp of spring, a day before my birthday.

Months, years have passed since then. But I still, to this day, think about her. She has, without knowing, made me a better wife, mother and nurse.

 I thank her.


Monday, June 8, 2015

No longer one of the boys....

Okay. So I have not written on my blog since January and I was even spotty prior to that.  I could blame it on a lot of things, but the bottom line is that I have simply not been inspired to write.

I have had enough of death.  A high school friend died recently, suddenly, without warning.  A young 41 year old mom, with three kids, recently diagnosed with terminal brain cancer.  The list is long and I will not bore you, but it became, over time, overwhelming for me. 

 I know there is no escaping bad news. Beheadings in the paper, massive flooding reported on TV and all sorts of unjustified shootings. Just too much to take. 

I finally just turned off the news once and for all. 

I like reading about tea. So that became my go to read. Teatime magazine has the loveliest pictures on-line of beautiful table settings and wonderful recipes.  I indulged in that when not working or cleaning or shopping or walking in nature or taking care of my new chickens and ducks. I started to feel better.  And I kept ignoring the real news as much as I possibly could.

But one headline kept screaming at me.  Bruce Jenner.  Caitlyn Jenner.  I see it everywhere. It is hard to ignore.

People are talking about it. A lot.  Perhaps that is a good thing.  At least she is using her fame to bring to light a subject many once thought taboo.

People are posting her magazine cover on facebook.  Some of the comments are cruel.  Some, not so bad.  Most of my friends have not posted.  I know I have not.  But still, I thought about it often.

I know a few transgender people. I like them. They are good people. They did not feel like they were men (they were both male at birth) and finally decided not to hide their true selves anymore and became outwardly female.  They were always female inside.

I thought, I could not imagine living like that.  Hiding something because of fear or shame or insecurity.  Afraid of ridicule. 

But then I thought more about that and decided, most of us do this all the time. I know I do.

Very few of us show our true selves to the world.  We think we are too fat.  This is not possibly me we say when we see a picture of ourselves.  I was always the skinny girl. That is my true self, not this tub!  Or we lose our hair.  Or our stamina   We go grey. 

So what do we do?  We try to fix it.  We try to become more our "real" selves.  The picture we have in our heads and hearts of who we truly are. 

So, how is this different from Caitlyn? Or any other transgender person?  They just want to live as their real selves, too.  Why do we find this so amusing and entertaining? This is someones real life.  Why is it so hard for us to accept change?

We are also most likely never going to be on the cover of a magazine and we are certainly not getting a reality TV show. We are not famous.  But the famous are going to be hounded and photographed and written about regardless how discreet they try to be.  "Gotcha" is the way society is entertained now.  So I am sure it was empowering for Caitlyn to take that power away and give it to herself and present herself in a way that made her feel beautiful and special. 

I wish we could all do that.  I hope her family responds in kind and embraces her. Society will not. That is hard enough, but loved ones turning away, that is a heartbreak I wish on no one.

I  remember a hospice patient I was asked to see years ago.  She was a lovely lady with end stage pancreatic cancer who wanted to die at home.  I went to the address I was given and was told her son  would be there.  But when I rang the bell, the door was opened by a woman.

Hi, I am Jane, she said.

She a looked a bit like a man, five o'clock shadow with a rather large protruding adam's apple that bobbed up and down as she talked.  She wore longish blond hair and a too tight shirt with a flowing checkered skirt.  Her voice was deep and strong.  She had beautiful, long red acrylic nails. 

Good afternoon, I said.  Is your mom Nancy here?

Right this way she said.

Her mother was in a lavishly decorated bedroom wearing a white flowing nightgown and robe.  She was reclining on the bed looking regal and thin, but comfortable and calm.

Come in she said.

Her husband, Ed, sat nervously in the corner. 

I came home to die and I want you to go over all my medications with James so that I am not in pain.

Jane, mom.  Not James anymore.

Oh, right dear.  Sorry.

I could feel the tension in the room.  It was palpable. 

Ed got up and walked away.

I stayed for over two hours.  I reviewed everything that Jane needed to do to keep her mom comfortable.  There was so much left unsaid in that room. You could feel it hovering like a cloud before the storm.  But I said nothing.

Then I left them and walked out to speak to Ed.

He was sitting in the kitchen reading the Boston Globe.

He looked up.

Do you have any questions I asked.

Yeah.  Why did my son do this now?  Why could he not have waited until after she was gone?  I just don't get it.  James is our only child.  He was James until last month.  It sickens me to the core. I do not know what to do.  He is no longer my boy.

I sat down with Ed. I did not know what to say.

We sat in silence for a few minutes, then I heard a loud commotion in the bedroom. 

Come on Ed, come with me.  Let's see what Nancy needs. 

Ed followed me as we hurriedly entered the bedroom.

On the bed we saw Nancy.  Lying next to her was Jane.  They were looking at old family pictures in an album and laughing.  The loud commotion was laughter.  They sat close lying against a sea of pillows touching shoulders. 

Come Ed, join us said Nancy. 

But Ed left instead. 

I followed.

He went back to the kitchen, sat down and cried.

I am losing my wife and I lost my son.  It is almost too much for a man to take.

But you have not lost your son I said.  You have to forge a new relationship with Jane. 

Jane, shmane.  I will never get used to that.  It is humiliating.  Do you know he went to Harvard?  Played sports. We went to football games and played golf.  He left his investment firm.  He is living this weird life.  I am so ashamed. 

As Ed said this I looked up to find Nancy standing there. 

Ed, she said.  He looked up.

We have been married 53 years.  James is still our son.  But he lived a lie for us.  He wanted me to know the true person before I died. He wanted to be with me as he truly is. As she truly is. As she has truly been all her life. Of course, I knew about this for a long time.  I hid it from you.  I knew you would not be able to take it.  I encouraged her to move forward faster, before I was gone.  I wanted us to be a family before I go.  I wanted you to know her.  She is all you have.  And she is the same, loving person we raised.  Inside.  I hope you can embrace that.  It is my dying wish.

Ed looked at her.  It was silent for what seemed a very long time.  I asked if I should go.  Ed said no. 

I have known also, said Ed. I want to love her.  But I love him. All my life I wanted a son. I cannot face the humiliation.  I built a life on a lie.  Everything is falling apart.

Ed got up, hugged his wife, grabbed his keys and was gone. 

I followed this patient for quite some time.  Most of the time Jane was there and Nancy's friends and sister.  Ed was always working or out somewhere.

One day I called Ed to see if might come home early.

Nancy is taking a turn for the worse I told him.

I was there when Nancy died.  She had a peaceful death.  Jane was there and so was Ed.  They both cried over what they had lost.

Not only Nancy, but each other.

I often think of them.  I had heard that Jane moved away from Boston to California.  Then one day I read an obituary about Ed.

 In it, James was listed as the surviving son.

Death is not the greatest loss in life. The greatest loss is what dies inside us while we live. ~Norman Cousins

What is the opposite of two?  A lonely me, a lonely you. ~Richard Wilbur

Your absence has gone through me like thread through a needle. Everything I do is stitched with its color. ~W.S. Merwin

Thursday, January 1, 2015

And so it goes......

Happy New Year.

I have heard that now from several friends and family members, be it through social media, a text or a phone call. And I say it back.  I truly hope for happiness for all. I am looking forward to a new year and do feel happy and hopeful. It is nice to be free to feel that way, a blessing really.

But last night, on New Year's Eve, my work phone rang.  Now, I had taken vacation time and we had a wonderful holiday in Italy the past 10 days.  My cellphone voicemail said that I would return after the New Year and so I thought about just letting it go.  But our furnace had a problem and I thought it might be the repairman as they had my work phone on file.  So I answered.

It was not the furnace repairman.

It was a discharge planner from a hospital I know well. She needed help.  A patient needed discharged to home and she did not know who to call after hours on a holiday night. 

The patient, she described, was a young mother with three children and a husband, who had an evil brain cancer that had worsened and she just wanted to go home to die.  As the discharge planner described the case to me in more detail, my heart sank.  It hit close to home as she had a daughter the same age as my own.

And so it goes. Life ends. It does. Not the happy reflection I had hoped to have on this New Year's Eve.  But an important one none-the-less.

It makes mindless resolutions seem silly.

So here are some resolutions that I am going to follow this year and that I have tried to follow always, but sometimes fall short.  The beginning of a year is always a good reminder to try harder.

1. Reach out to people you meet and be kind, even if they are not.  You have no idea what they are going through.  Have blind compassion.

2. Be patient with people.  They do not have to live up to your standards, your schedule or your agenda.

3. Hug your kids more. Even teens who snarl. They need it most.

4. Never ignore a homeless person.  If you do not want to give them money, at least acknowledge their presence.

5. Do something nice for someone, it does not matter who.  Do it when you are feeling like no one cares about  you.  That is the best time.

6.  Remember that you will die.  We all will.  But what we leave behind, in thoughts and memories, is important.  So think before you speak.  Someone may remember that the rest of their lives. 

7.  Try not to take yourself or others so seriously.  But do not diminish other's thoughts or feelings.  Why be a cloud in someone else's parade?  Why do that?  Just don't.

And so it goes.....Another year to hopefully be safe, happy and a bit wiser. 

Peace to all. 

A good character is the best tombstone. Those who loved you and were helped by you will remember you when forget-me-nots have withered. Carve your name on hearts, not on marble.
~Charles H. Spurgeon

Approach the New Year with resolve to find the opportunities hidden in each new day. ~Michael Josephson