it does not come naturally

February 23, 2014 at 10:29 am (death with dignity, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, life is random, living with dying, the dr. says)

i so wish that writing about myself came naturally. it would certainly make writing this blog so much easier.  it isn’t just writing though, i don’t particularly like talking about myself either. i like listening. that is what made me a good nurse and therapist.  there are times i try too hard to be social and that can be awkward. i end up feeling like a bore.  i am happy to sit quietly for hours.  sometimes i realize that this attracts people who love to talk and some like very much to talk about themselves.

understanding where a behavior originates can be helpful when wanting to change that behavior or for me to simply explain to myself or other’s why i am this way.  when seeing patients it was usually clear if they needed to know the origin in order to make changes.  psychoanalysis never appealed to me though.  to listen for years to the same conversation with the hope that eventually the patient would realize when, where and under what circumstances a behavior or habit started, was my idea of hell.

insight is a beautiful thing though and so i started thinking about my avoidance to say too much about myself.  the quick answer was i have always been this way and to a certain extent this is true.  my grandmother used to assure adults that when i had something to say, i would say it.  i grew up keeping quiet about things as not to upset my mother.  if she thought i was happy and asked me questions i knew it was going to be trouble.  i was a very serious child. laughter could mean her coming after me to make sure i had nothing to laugh about.

so the habit was formed. as a nurse and a therapist we do not share about our private lives.  our job was to be caring and not cared for.  this was our patients time to be heard.

i will admit that once i started writing this blog it became easier to write about myself as this is for my family and friends to have a record of this time.  to share with my grandchildren what i want them to know, when they grow up, who i was and how i coped.

after being away for a bit i am finding it hard to get back in the groove.  the trip to california was way too much and showed me what my limits are. even now i am not sure i have recovered nor am i sure i ever will.  would this change have happened regardless? my guess is it likely would have.

i have missed coming here. it was becoming more enjoyable and i looked forward to those who take time from their own busy life to listen to me.  of course my love listens to me. it took quite a bit to trust that he wanted to hear what i have to say.  he is so fascinating.   after all these years i can sit and listen to him as long as he wants.

or we can sit in quiet, just content to be in the same room with each other.  it is that way with my sister as well.  she can make me laugh til i cry, we can just sit and hang out.  my step-daughters are the same way and i can’t tell you how much this means to me.  i just started thinking of the people in my life that i have this with. my guy joe, we worked together in calif, never balked at the times i would just come to his office and say what i had to then say, ok I’m done.  i would then get up and walk away.  or i might come in and sit knowing he would start telling me stories or share information. i loved listening to joe. still do…

i have no doubt that the people who are my friends are so in spite of me and not because of me.  my family accepts me as i am and that is a gift above and beyond:)  hope i haven’t droned on too long.  you are all so kind and gracious.  i appreciate you, i love you and know i am blessed.  the whole heart thing is going as well as can be expected.  so far it is still beating.  sometimes i wonder how it does it but mostly i am just in wonder.  i have never been happier than i am right now.  life is just so good.


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the waiting can be exhausting

June 5, 2012 at 2:26 am (dying, end stage, end stage congestive heart failure, family, feelings and thoughts, gratitude, how does it feel to die, life is random, survivor guilt, waiting) (, , , , , , , , )

getting texts from middle sister with updates on the mother.  much like Pavlov’s dog the muted ding on my phone elicits the intake of breath.  it is not from calif so release the breath.  it is from calif so just look at the first few words, okay so far, so finish the text.  a call from nephew and a stillness, his voice lets me know that it is not the news we are all expecting any day now.  some texts ask if this or that is normal under the circumstances.  middle sister and nephew are not in the medical field.  they are not like younger sister and myself.  their lives are much different from ours.  they are the least prepared for this task and yet they are the ones called on now.  the only thing to do, reasonably, is be a support for them.

as much as my mind dismisses this and seeks to maintain focus on her it is at times a challenge. it is a challenge not to feel my own death coming and wondering if it will be similar.  would i make the same choices? the toll on those around her lead me down the path my own family will take in the not too distant future.  one question that snaps at my heels, like the crazy border collie nora, why not me?  she was diagnosed long after my own heart failure, she was able to have heart surgery to repair what can never be repaired in my own.  the man who had the same condition and device leaves his family months ago and yet here i am.  survivors guilt is a term anyone in the mental health field is familiar with.  to know what it is did indeed help me through some tough times.  after much searching it is hard to call this survivors guilt.  though it is a question likely to never be answered it is not guilt that i feel so much as how does this happen? does it go back to life just being random?  is there a flow to this not seen from so close?  is more required of me before i am released?  so many are deserving and at times though grateful for the sentiment, it is too cliché to say i am needed or i have a great attitude.  so many others are more needed than one like me, others want  to live as much while some have proven their value to the world.

it is humbling and awe-inspiring to wake each morning and think here is another day given.  another kiss from my love, another smile to share, another day  to wait and bear witness to the passing of another human being.

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like talking to the buddha???

April 1, 2012 at 12:09 am (life is random) (, , , )

after reading some other blogs not only do they have a writing style to be admired, they have “titles” that are clever and funny.  these are not traits possessed by myself.  today while at the bookstore, one particular title sort of jumped out at me.  not too long ago a young friend of ours said talking to me was like talking to the Buddha.  this is, let me assume, a compliment as he is a kind young man.  strange how we project such characteristics onto others.  many animal lovers do it with their pets.  I will say my cats are smiling, smirking, or appear to understand what is being said.  experts would declare that is not possible and we are simply projecting these human expressions on them.

this occurs to me as I ponder what the Buddha and I may have in common with each other.  thumbing through the pages my interest is piqued by a couple of random lines.  one is that we should not seek to be “special” as it can bring us suffering.  if we feel that we must be special in some way, or others will not want to be our friend or love us, leads to frustration and low self-esteem.  it has never been an issue for me.  feeling special has never been a desire or feeling.  when growing up my grandmother was always very adamant that I not take compliments seriously.  they are of shallow non-intrinsic values was her message.  if someone told me that I had beautiful eyes she would say to thank the person but to remember that many people have beauty, not so many are humble or have the beauty that matters in life.

my life’s work has been to serve, it is my joy.  it is the kind of joy that comes from doing something well and knowing that you are making a difference with your life.  this doesn’t mean that my work is any more valuable than anyone else’s just that I have been so blessed to work at being in fields that gave me great satisfaction while allowing me to give something as well.  my time in the military was a chance to serve my country, my fellow soldier and take care of my family. each experience  led me to this place and space I occupy now.  this is just where I belong.

my life has not been anymore interesting than anyone elses.  for whatever reason a friend of mine has decided to think about turning this blog into something more permanent.  she is a warm and wonderful woman who has experienced loss.  her story is not mine to tell so I will not share more than that here.  she has much to say and many can benefit from her sharing. if my story inspires her to write that which must be written then I am honored.

all this leads me back to wondering if there is some reason I am still here?  it has been suggested that having a great support system, being a good person, any number of “special” reasons to explain my survival.  realistically I know and suspect they do as well that life is way more random than any platitude.  my friend’s brother was all and more than I am, and yet he is gone.  of course not just him, so many have gone before me and yet here I am????  when I read about someone who had so much to give, like liz taylor, it confirms just how random life is.  as a bit of superstition I am hesitant to even say I am still here in fear that the universe will notice and realize the mistake.  so let’s keep this just between us for now:)

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I was not expecting this …..

March 20, 2012 at 2:51 am (death, defibrillator, dying, how does it feel to die, life is random) (, , , , )

a couple of days ago I messaged a friend in another state.  we are not exactly friends but are acquainted in a rather strange way.  TG has a brother who had a defib implanted about the same time I did.  the brother was doing well and enjoying this gift of extra time as I am.  tonight I saw that TG had answered my message and it started with how he and his wife are doing, then he says his brother passed in Jan.

of course I am happy for the brother who had his brother for the extra time.  I am happy for the brother who had the gift of time.  he seemed to make the most of that time.  it was not a cure of course and so he is gone.  just like that …. one moment we are here and next we are gone.

earlier today a friend sent a video that showed a man on the beach, he is waving to his friend who is holding a video camera.  the man is waving and suddenly an orca scoops him up and he is gone.  he was not in the water, he was on the edge of the water.  if his friend had not been looking no one would have ever known what happened to this man.  that is almost incomprehensible.  he was just gone,  just like that…. gone.

my own health is changing, now I have angina or maybe I always did and it is just severe enough to notice.  I have booked and planned the trip to oklahoma for my husbands reunion.   if I can’t make it I am hoping that one of his daughters will go.  I will do my best to go if I am not gone by then.  It could happen to any of us, we are smiling, waving, and then we are gone.  just gone…..

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Mourning for Christina Symanski: Better Off Dead?

December 14, 2011 at 2:15 am (assisted suicide, choice, coping, death, death with dignity, family, hope, how to die in oregon, life is random, moving forward, Uncategorized) (, , , , , , )

anyone watching “how to die in oregon” could come away with several thought-provoking ideas.  one that, in my opinion, was fundamental to the documentary is the choice/ability to change ones mind.  if you opt for assisted suicide or ending your life with “dignity” there will not be a chance for that very basic tenet.  until recently I have held firm that it is the right of the individual to make that decision for themselves.  in my mind there are qualifiers, you must be terminal, in your opinion( and not the opinion of others) your life has ceased to have meaning or dignity.  it is still my belief that one person can not understand the full gravity of another humans suffering….

that is until I became aware of Christina Symanski.  if you are upset easily with what may seem to some as a harsh interpretation then I ask that you not read further. if you do please keep in mind that it is one persons opinion, mine, and that is the only one I can voice here with real understanding and honesty.  initially the reaction to her decision was the standard not for me to judge. it is not my intention here to judge her as a human only the decision and what it was based upon.  she truly suffered, in the blink of an eye she made a rash decision and paid for it dearly.  in 2005 this young woman was at a party, she became frustrated that others were not going for a swim and so she dove into a pool that was not to capacity.  as a result her life as she knew it was ending, it could have been a beginning and for some that is what it would have been.  only another quad would be able to have more than a cursory knowledge of this way of life.  yes I said way of life, it was different from what  she had experienced so far. to some it would have been a change in lifestyle, to her it was the end of life as she knew it.  on a smaller scale my own experience took me from extremely athletic to sedentary.  this was not by choice and certainly took adjustment.  while not on the same scale it gives me a glimpse some may not have.

on the outside Christina appears to have so many reasons to value her life, yet she made the decision to end her most precious gift.  having a mother with a serious disability gave me a different understanding of how to cope with obstacles.  even now with numerous health problems and post-polio syndrome marie does not consider( to my knowledge) ending her life.   the question that seemed to repeat itself throughout her blog was why me?  it has been my choice to ask why not me?  the what if game can lead to crazy making thinking.  it is my belief we are where we are supposed to be at any given time so it would stand the what if does not have a place in my life.  certainly that does not preclude learning from mistakes.  there have been many along the road and I anticipate making many more.  it gave me a chuckle, and I hope I can be forgiven here, to read about a man with Parkinson’s who fell trying to something he wanted to do and yet most certainly knew it would not come out well in the end.  I laughed and laughed, not at him but at myself and how we give up such ideas only when faced with very real danger.  at times my physical being is so weak that I trip and fall quite easily.  last year while my husband was away it was my belief that I could go down the few stairs in front without holding on. what was I some invalid?  out I go and down I go, very hard it should be added.  over the front and into some hedges, as I lay thinking of my humiliation it occurred to me that the neighbors could not see me due to the hedge.  so taking my time I eventually made my way to a sitting position, drug myself to the stairs and in time back to the house.  a few days later, hubby still gone, it seemed reasonable to try again. of course I had learned my lesson and was prepared mentally if not physically.  was I none the wiser? well yes and no.  as I began to fall it occurred to me that the army training would be valuable about now.  so I looked to the side of the porch and pitched my body that way as it would be a softer landing.  it was farther down but it was softer.  the farther down part made it a bit more difficult to maneuver back to the porch, however being in one piece gave me spirit of heart.  until his return the garage became my exit and entry as it was easier and safer.  

 laughter seemed to be missing from her writing.  it is not that she didn’t experience laughter it just occurred to me it was absent in a way I can not explain.  although she was involved with good works, was able to continue as an artist and had time on her side, she must have been so sad.  not sad  in the common way we may feel sad but down in your heart and soul sad.    the kind too many are not able to recover from.  

this one time I will allow myself the what if question, what if this young woman had been able to wait, and our system of healthcare could have given her another option?  was she just destined to this end? that is one possibility, there is no hope in that answer. no hope is really what killed this young woman.  she will be remembered by many, for as many different reasons as there are people.  she will be remembered here in this house and her death has given me more  questions  than answers.  a life gone too soon. her choice.  I will respect it was her decision.  like every decision we make it will continue to affect others.  those that live are those that live with our decisions.

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just when you thought it was safe

October 26, 2011 at 12:59 am (deer in the headlights, gratitude, life is random, native american myth-deer, Uncategorized) (, )

after my last visit with the dr., and hearing I would most likely be okay through the holidays, I was feeling pretty safe.  life has a way of reminding us just how random things are. not that we should go around waiting for something bad to happen, that is not my intention here. Chris and I went to Jekyll Island, a nice little beach area on the coast of Georgia.  we had a couple of things planned and the rest of the time just relax and enjoy whatever came our way. one of the things we wanted to do was go out on a boat to see dolphins. unfortunately the weather was bad and the boat could not go out on our last day as planned. we decided to stay over part of the day, next day, and then head home.  the water was choppy and some people were cold and sick so the boat went back to dock to let them off but headed back out for the rest of us.  it was worth the wait I have to say. we saw dolphins playing and a blue heron, along with other marine life.  it had been a wonderful couple of days with walks on the beach and just putting everything on hold for that few days.

we do not usually travel after dark. not driving anyway, it has just not appealed to us and seems more dangerous as we get older.  however, we had made the choice to stay for the dolphins and were fine with driving late.  we stopped for dinner and I decided to drive. Chris usually does most of the driving but this day he was having problems with his shoulders hurting. over the past couple of years we have had an ongoing disagreement over whether or not I should drive when I am not feeling well.  to him if I have any pain then it is his job to take over. my thinking is I am going to be in pain whether I am driving or not so why shouldn’t he avoid being uncomfortable when he can? it doesn’t hurt that I love driving my car either. we have a toyota avalon and it is the most comfortable car I have ever driven. as we head down the road, on the interstate, it is dark and there is construction going on at night. I was taking it slow as not to hit some highway worker, we passed in to an area that was down to two lanes and the construction was shut down for the night.  there is music and conversation, then there is a full-grown buck standing in front of the car and he is looking straight at me. our eyes are locked and we are both “deers caught in the headlights.”  there is no way to avoid hitting him and he starts to move, we collide.  there is no way for me to communicate here how traumatic this event was.  I just got over to the side of the road and couldn’t stop crying.  Chris was so wonderful and understanding. he was also extremely efficient.  just days ago he had been talking about how inefficient he was, how he was disorganized and felt like a bungler. I did my best to reassure him to no avail.

he took time to calm me and see if I was hurt. as I watched he went in to full in control mode. he was on the phone with AAA and the insurance company then the state police showed up and Chris filed the report we would need.  upon his arrival the state trooper had come to my side and asked if we were okay and for the registration and my license. he seemed almost incredulous when he asked if I was crying, I said yes and that was almost the last time he spoke to me. from that point on he worked with Chris. after he was done and the tow truck had arrived he did tell me he would go back and look for the deer, if it was suffering he would take care of it, he promised. that had been my biggest concern through this whole thing, that bambi’s daddy was laying on the side of the road suffering. the next day when we had our rental car, had been to the repair center who has our car, and we were back on the road, I decided to let Chris see himself through my eyes.  to me he was the hero of the day, and he is the hero of my life. in the movie pretty woman she says she wants the fairy tale, he asks her what happens after the knight rescues the damsel and she says “she rescues him right back.” I believe that is our story in some ways. sometimes we forget how important it is to let others know how much we appreciate them, or how they make a difference in our life. it is my goal to not leave this world without letting others know what a difference they make in my life everyday.

I thought nothing could happen to me since the proclamation of I would make it through the holidays. this was a reminder that life is still random and there are no guarantees for any of us.  so watch the dolphins, let someone you love know how you admire them and they make your life better. we came home to family and friends who care about us and are glad we are ok.  we went to the pumpkin patch with baby G and the ponderosa girls, we are going to Charleston this weekend to see our much-loved family there. J got his GED and P got her trophy for cross-country. I talked to Heather and was reminded once again how lucky I am to have her in my life.  the accident was just that an accident, it could not be avoided. it was one more opportunity to embrace life and appreciate all the wonderful moments that are yet to come.

I am going to share a story I grew up with and may explain to some why the deer is so important to me.  this is a native american story. one winter the tribe had run out of food and the children were starving.  on the edge of the forest was the deer along with some other 4 legged creatures. the mother deer wept for the children as they lay crying begging for food. the elders had gathered around the fire to discuss what they could do to save their loved ones. from the woods came the deer and she said to the elders, I am going to give my life so you may live. I will show you what you must do and you must vow to never take the life of a 4 legged except for food. you must never kill for pleasure and only for what you need to survive. with that she lay down and instructed the elders on how to kill her and how to use her meat.  I grew up not as a vegetarian but as a non- meat eater. my grandmother and many of the older members of my community would gather and when someone had killed any animal for food it was blessed and thanked for giving its life. this has stayed with me throughout my life.    some of you may now understand why this was so emotionally charged for me. I hope that he made it and there is no proof he didn’t. I will just believe and hope.

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