What I didn't know...

The “Proscenium Arch” is a theatrical term for the framed area of the stage where the primary action takes place.   It is where our focus is drawn.   Actors perform for us within that arch and then go off stage, where they might spend their time refreshing their makeup or checking their scripts.   We don’t really know what they are doing, because we don’t see them…and frankly, when they aren’t in that arch, we quickly lose interest in their existence. 

In truth, we each live our lives like that.  Our vision creates our own personal “proscenium arch” on which the theatre of our life plays.   We see what is in front of us at any given moment, and those things that are going on behind us or far away from us (out of our line of sight) take on a far lesser importance.  

I had the crazy idea once that if I turned around fast enough, I might actually see that there wasn’t really anything behind me.   My theory (which is incredibly self-centered and kind of ridiculous) was that if I wasn’t seeing it, maybe it didn’t really exist.   It’s kind of like that old saying that “if a tree falls in the woods and no one is there to hear it, would it make a sound?”  

My point in all this theorizing and postulating on what is real and what is not is that there are a lot of things going on in this world that I can never see or experience firsthand.    Still, just because I don’t see it within my personal “proscenium arch” doesn’t mean it isn’t taking place somewhere and might at some point have an impact on me or someone I care about.

Since my world revolves around me, I usually think I understand it pretty well.  I know those who have fallen into my orbit (family and friends) and I think I have them pretty much figured out.    Ask me about one of them and I can sum up who they are in a couple of common, simple words or phrases.   I can do this because this is “my world” and it’s all about what I know.

The problem, as I have become acutely aware, is that I don’t know that much…and what I do know, I don’t understand all that well.

Before she died, I would have described my sister with a few words:  “strong willed,..fun loving...stubborn.”  I would have told people that she “loved her family and friends” and I was “amazed at how resilient she was in the face of her physical challenges.” 

I would have said these things to encapsulate the entirety of her life.   Almost 44 years boiled down to 23 words.   Not even close to a word per year.

I loved my sister, despite some of our differences, and I thought I knew her, but I did not.   I knew what I saw, in that narrow window that I view the world through, but I did not see her off my stage, living and interacting with others. 

It was not until after her death that I began to get a better view of Tracy and who she was.   Through the words of others a picture of my sister emerged that was much more complete than the role that I allowed her to play in my life.  I did not see the impact her compassion and friendship made on others.   I did not see how her determination to live life on her terms was inspiring to so many.

I did not know.

Our life has many Acts, and sometimes characters that perform such an integral part within one Act will play a much less significant role in others.   Without a doubt my parents, my two brothers and my sister were the stars of my life’s first Act.  

Mom was the central character; my moral compass, my teacher, my healer, my therapist.   She defined my childhood with her unconditional love and her acceptance of who I was and who I wasn’t.   She was rarely off the stage, and if she wasn’t front and center, she was busy in the background, doing something to make my life easier and happier.

My life’s second Act began when I met Connie.   When she was on stage, she held my rapt attention, and when she wasn’t, she was rarely off my mind.   The stage was reset when we married and after moving to Tennessee, the sets and scenery changed.  Three new stars took center stage when our daughters were born, and the appearance of beloved characters from the first Act were far less frequent.  

You justify in your mind that talking on the phone once or twice a week or visiting three or four times a year keeps you involved in someone’s life, but that leaves a lot of time unaccounted for.   You don’t intend for those characters to stay offstage for so long, but there are so many things going on in front of you at any given time that it is easy to forget who is waiting in the wings.

We do not recognize that we are co-writers of our own script.  We have considerable control over who comes on stage and who doesn’t.   Since we are generally making things up as we go, most of the time we see what we want to see at that particular moment…and later we might wish that we had written things differently.   

As I look back on the staging of my life, there are many scenes I wish I had written differently.

I did not know that my sister would die on August 1, 2012 and that I would be fortunate enough to be there and say one last goodbye. 

I did not know that only six short weeks later I would receive a 2am phone call from my brother telling me that my mother was gone.   I did not know that I would never get to tell her “Goodbye…I love you,” or give her one last hug.  

I did not know, when I spoke to her in that quick conversation from the airport the Friday before she died, that it would be the last time I would hear her sweet voice.   I did not know that when I was busy on Wednesday evening and thought, “I’ll call tomorrow,” that Thursday would be my first day without my mother.  

There are so many things I did not know…

Mom was offstage for much of the Second Act of my life.   She was often on my mind, and always in my prayers, but I didn’t write her into as many scenes as I should have.  

I must also recognize that Mom was living her own play in which I was a character.   She did not write me out of her script, but set me free to live my own.   She did this because she loved me, and she never stopped.  I loved her too, and I am grateful that I told her that many times.  

Her final Act on this Earth ended much earlier than I wanted.   I thought she would be with me for many more years.  Still, I could not ask for a more wonderful passing for someone that I love so much than to go peacefully in her sleep in her own bed.  A better author than I wrote that part of her script.

There are times when I would like the chance to do a re-write on parts of my own life, but I know that is impossible and probably unwise.    I have to accept the simple fact that there was much I did not know, much I did not do, and much I did not say.   These are things which I hope will inform me as I enter the final Act of my life.   If nothing else, Mom would have wanted me to learn something, to find out those things I “need to know,” and to be a better person.

I have just begun the long mourning and the missing of her physical presence in my life.   To never be able to pick up the phone and hear her voice and her wise counsel again breaks my heart.   To walk up that path to the family home and not see her at the back door, smiling and ready with a hug, is almost unbearable to think about.  But as the wise young pastor, who spoke so eloquently at her funeral said, "she's now waiting at another door."  

I know that to be true...and I'll hug her again one day.

I love you Mom. 

Tracy

It’s been a little over a month since I watched my sister take her last breath, and it still does not seem real.  For the longest time I felt confident that I was ready for her to go; convincing myself that she would be better off without the pain and what I considered to be her poor quality of life thanks to the ravages of Buerger’s Disease.    I never thought it would be easy, but I also never expected it to be so difficult.  

Tracy had gone to the edge and back so many times that I foolishly expected her to do the same again.  I had seen her labored breathing before.  I had seen the waxy, discolored skin.   I had seen her weak and struggling.   Somehow, she always fought through it and came back, smiling and laughing and ready to get what she could out of the life she had been given.   Even when the doctor came out and told us that morning that she wouldn’t make it through the day, there was a little voice in the back of my mind saying, “You don’t know my sister.”

I was four years old when Tracy was born.   With three older brothers, she was both protected fiercely and teased mercilessly at home.   She and I had the same color hair and eyes, setting us apart from our brothers and bonding us somewhat along with our closer age.   Of course, she was still a girl, and I wanted to be like my older brothers.  I didn’t want to play with her dolls and she didn’t want to play with my trucks and toy guns.  

We often played games in the yard, usually epic battles of Kickball, and I’m not sure how her self-esteem fared, but mine took a few hits.   It always seemed that I could not kick a ball that my brother David could not get to and catch in mid-air.   It was a rare thrill to actually get to first base.   As we got older, I’m pretty sure that it didn’t take long before even Tracy was better at the game than me, but it was always fun, and we’d sometimes play until it was too dark to see the ball. 

I find myself remembering our childhood in nostalgic, Rockwellian ideals.   I’m sure it wasn’t perfect, and I know that we had our moments of fighting or frustration, but those moments don’t rise to the surface of my memory.  What I remember is my little sister, wearing her cute little dresses and black patent leather shoes for church on Sunday mornings.  I remember Mom combing her long blond hair and pulling it back a little with flower barrettes.   I remember Christmas mornings and her bright eyes; waiting at the top of the stairs for the okay to run downstairs and see what Santa had brought us.

By the time I entered High School, my interest in anything outside my own selfish preoccupations had begun to separate me somewhat from the day to day issues of my sister’s life.   We lived in the same house, and I am sure that I had some marginal concern for what was going on, but I never sat down and asked her how her day had gone, or what her friends were like, or if there was anything I could do for her.  I’m sure I thought I was a “good” big brother, but looking back, I know that I was not what I should have been.

During this time, my grandmother came to live with us, and I had no idea what effect this might have on anyone else in family.  I was able to escape to my room or to work and school.   I didn’t think about the pressure it put on my mother, and I certainly didn’t think about the stress it must have put upon Tracy.

I have wonderful childhood memories of my grandmother and grandfather, Pauline and Hack.   Mamaw loved Tracy, and being an accomplished seamstress, she made her some beautiful dresses.   They didn’t have a lot of money, but they gave us lots of hugs, and we never ended a visit without Mamaw saying “Give me some Sugar,” and we would happily kiss her on the cheek.

Unfortunately, Mamaw had a stroke in 1977, requiring her to spend five days a week with us while Papaw worked, and after Papaw died in 1979 she came to live with us full time.   The stroke had changed Mamaw, and her worst traits came out.   She treated my Mom like her personal servant and was constantly, often rudely, asking for something.  Also, and probably because she could see that Tracy still needed my mother’s attention, she grew jealous of Tracy and would give her mean looks from across the room or mutter ugly comments. 

I was not happy about the way Mamaw acted toward Mom or Tracy, but my young mind thought there was only one answer to the situation (Mamaw should leave our once happy home).   I didn’t realize that I could have helped Mom more or offered Tracy a safe haven from that torment.   I was blind, stupid and selfish.  

As Tracy moved into High School, she looked for escape where she could find it.   Some of her friendships were not healthy, and she picked up some very bad habits.   She started smoking and later admitted that her experimenting with drugs began in high school.  

Mamaw died in 1985, having lived in our home for nearly half of Tracy’s life.    I often wonder if Tracy’s path would have been different if Mamaw had not come there.   I wonder if it would have been different if I had been a better brother.

I have tried to teach my girls the importance of choices.   I tell them that no matter what mistakes I might make as a parent, or what bad influences others might have, they have to live with their own choices.   Sometimes even the small decisions might have a big impact.   That’s hard for a kid to understand.   It’s not that easy for adults either.

None of us knew that we were carrying the gene for Buerger’s Disease.   We didn’t know that it is triggered by smoking or the brutal damage it could cause.  It wasn’t until after Tracy was diagnosed with it in her mid-twenties that I learned that my Dad’s father had it.   I knew that he had lost a leg, but I thought it had something to do with an accident at work.  I didn’t know it was related to a disease.  I didn’t know that it had killed him.  

Tracy was the only one in my immediate family that smoked.   I’m sure she thought she could quit anytime she wanted.   I’m sure most smokers start out that way.   I have been that way about losing weight.   When I’m ready, I told myself, it will be easy.   

Tracy threw that back at me once when I told her that she needed to stop smoking (this was before the Buerger’s started systematically destroying her body).   She could be brutally honest, sometimes painfully so, and her response to me still cuts to this day, “When you lose your weight, I’ll quit smoking.”    Once more, I failed her.

Tracy was a magnet for men who didn’t deserve her.    She was loyal to a fault and always committed (to her detriment).  She looked past their multiple problems and loved them unconditionally.   None of them earned this through actions or any obvious potential for change.   She saw something in them that no one, especially her family, ever saw.    It always took something drastic, and usually horribly sad, to break the spell they had on her.   

It’s a testament to her spirit, though, that she never dwelled on her broken heart.   She mended quickly and opened herself up to the next heartbreak.   Her faith in others was usually unmerited, but it never faltered.   

After I moved to Tennessee, my contact with Tracy was limited.   We’d see each other a few times a year or talk on the phone when I had the time.   Her life and mine had taken different tracks and I found less and less in common with her.   She loved my kids (and all her nieces and nephews), and once it became obvious that the disease would not allow her to have children of her own, she doted on them.  

As the disease grew more painful, and the doctors were forced to start taking drastic measures of amputation, her use and dependence on drugs grew.   We were all concerned, and we could see the difference in her mind…once sharp and focused, becoming more scattered and foggy.  

Looking back on that time, I hate what the drugs did to our family.   We were all hurt in different ways, and I know that Tracy would never have said nor done some of the things she did if the drugs hadn’t been controlling her.   She loved her family…and I know she loved me and my girls.  

The doctors finally intervened and put her on a regimented drug program to control her pain, and slowly she began to come back to us.   With her mind clearer, she started recognizing that some of her so-called “friends” were only using her, and she worked hard to re-establish relationships with family.   She went to church when she was able and was baptized; turning to God for comfort and doing her best to keep a positive attitude.

The smoking and the progression of the disease continued to take a toll on her body.   By the end she had lost her right foot and most of her left leg.   She had also lost all her fingers and thumbs, down to mere nubs.   The addiction to smoking was only intensified by the Buerger’s, and although she tried every way she could to stop, she smoked until the end of her life.

For most of us, the multiple amputations and pain would have been too much to overcome.  I can’t imagine the will and strength that it took for her to do even the simplest things.   Her independence was important to her, and she lived alone, which still amazes me.   She adapted and learned how to write with better penmanship than most of us.   She used her computer to stay in touch with friends and family.   She could text on her phone better and faster than I ever could. 

Of course, she had help, and my Dad was there for her almost every day for something.   Mom did her laundry and they did her shopping.   Dad took her to doctor’s appointments and on errands, loading her wheelchair in and out of the car at every stop.  Their devotion to their baby girl was amazing and inspiring.

As her condition worsened, my brothers and I were  frustrated that she did not agree to go into an assisted living center or a nursing home.   We were very concerned for our aging parents, and Tracy's health, and we often told them that we thought they needed to pull back and not do so much.   Dad always answered the same, saying, “We would do the same for any one of you,” and I knew it was true.

Dad got sick and had to be rushed to the hospital on the evening of July 3^rd.   I got the call that night and my brother Wayne told me it was “congestive heart failure.”  Dad could barely breathe and had a large amount of fluid on his lungs.   The next day as the family sat in the waiting room outside of the Critical Care Unit, it briefly crossed my mind that it was a rare thing for the four of us kids to be together and Dad would like that.  I didn’t know that it would be the last time.

As his condition began to improve slightly on July 5, Tracy was brought by ambulance and placed in the room next to Dad.  The family took turns going from room to room and nurses joked that this should be renamed the “Warford” wing.  

They both went home after a few more days and Tracy knew that Dad could no longer be there to help her like he had been.   Dad’s recovery would be long, and the doctors put him on a strict diet and told him he could not drive. 

Everyone pitched in to help, and I greatly appreciate that my brothers lived close by since I live so far away.   At the end of July, Wayne called to tell me that Tracy was back in the hospital and it was serious.  A nurse had told him that she didn’t think Tracy would leave the hospital.   I had received many of these calls over the years, and I had become a little jaded.    I had made several emergency trips home after hearing “it doesn’t look good,” and although grateful each time that she recovered, I had begun to think that she was indestructible.   Having just returned from a trip to take my Dad to the doctor, I almost convinced myself to wait a day and see how she was doing then.   Something told me I should go on that night.

The next morning, I picked up mom and met Wayne at the hospital.  My cousin had planned to come in for a visit and Dad stayed home to meet him.   None of us thought August 1 would be any different than any other day.

Tracy was sleeping when we got to her room, her breathing was heavy but she appeared to be resting, which we knew she needed.   We went to the waiting room so we wouldn’t disturb her.    They told me that the afternoon before Tracy had asked my Dad to come and sing to her.   Dad sat on the edge of the bed and sang “Amazing Grace” while she weakly sang along with him.   

It wasn’t long before her doctor came into the waiting room to ask about resuscitation, if it became necessary.   Wayne told her that it was Tracy’s wish not to be revived.   The doctor agreed and explained that the Buerger’s disease had slowed the blood flow to such a degree that her internal organs were dying.  He said that there was nothing more they could do and he could not see her making it through the day.  

I left immediately to get Dad, and he was waiting at the door when I got there.   We were back in twenty minutes and went straight to her room.   Wayne stood outside on the phone and we went in to find Tracy breathing heavily, her whole body shaking with each rattling breath.  Dad went around the bed and sat down beside her, placing his hand on her arm.  I stood by her and leaned in to kiss her forehead, whispering, “Love you, Sis.”

A nurse came up behind me and said, “The doctor asked us to take the monitor off,” and I stepped aside.  She reached to remove the electrodes attached to Tracy’s upper chest.  As her fingers touched the first lead, I noticed that the room had gone quiet, and I saw Tracy’s head move slightly to the side.   The nurse laid her hand softly on her chest and looked at my Mom and Dad.   “I think she’s gone.”

It was that quick.   Dad and I had not been in that room more than two minutes and her life was over.  Tracy was 43 years old.

 I could almost feel myself stop breathing.   I have never been present when someone stopped living.  I’ve seen people die in movies and been to funerals where I’ve viewed a body.  I’ve experienced death from a distance and mourned for lost loved ones.    I thought I understood the process of death and what it would be like, but the reality of it was crushing.  

Mom turned away and sobbed.   Dad sat stunned and continued to hold her arm.   I backed out of the room and looked at Wayne.   Through trembling lips I could only repeat what the nurse had said.   

We went back into the room and were followed by more nurses who checked for a pulse or any sign of life.    Tracy had been in the hospital so many times in the last few years that most of the staff knew her by name and by smile.   She joked and cut up with them, even when she was feeling her worst.   Most of them fought to hold back tears.

I tried to console Mom, but she was feeling pain no physical injury could bring.   She cried for her baby and she cried for the life that Tracy never got to live.   When I finally helped her out of the room, she didn’t look back, nor did she go back again.   She said she wanted to remember her as she was.

I called Connie, because I needed to hear her voice.   I called my brother David, who was trying his best to get back from Nashville before she passed, but instead would have a long, grim drive home.  

While we were out of the room, the nurses removed all the wires and IV’s and cleaned her up.   When I returned a little while later, she was laying much as she had been when I left, head turned to the side, but with a crisp, white sheet pulled up to just below her chin.  

Knowing that Tracy had made arrangements for her body to be donated to the University of Louisville for research into Buerger’s Disease, I understood that this would be the last time I would ever see her.  Sitting there beside her bed, the wall that had stood between us for so long finally collapsed.    I said things that I wished I had said while she was still alive.   I told her how sorry I was that I hadn’t been there like I should have been.   I told her how much I loved her.  

I didn’t need to hear anything back from her.   I just needed to say it…and I believe with all my heart that she heard every word.