thoughts and words

November 4, 2012 at 6:56 pm (being remembered, end stage congestive heart failure, feelings and thoughts, heart failure and exhaustion, how does it feel to die, living with dying, pain, road trips, the dr. says) (, , , , )

last night is not the first time this has happened and it is so frustrating.  when all was quiet i knew i wanted to share some thoughts and feelings here. the problem was the thoughts could not find their way to the fingers.  fingers were at the ready, just come on brain, give them the words.  at one time i had a fairly good range of vocabulary, not now.  sometimes words are right there just waiting to jump out yet when i sit in front of the screen?  nada, nothing forms. at times i would swear that the words have a feel and taste to them, they are as real in my mind as they are when typed.  after this disappointment, more often than not, all the words and more come bouncing forward.  thoughts and phrases lost earlier are now rollicking through my ready for sleep mind.

it isn’t surprising with the lack of oxygen to all my vital organs of course my brain is affected. driving vacations are probably not the best anymore.  after only a couple of hours in the car my fluid retention is a hazard.  once we stopped i was too exhausted to take the medication that would have helped.  since i do not want to disappoint h or myself i push to get up and moving long before i have had enough rest.  we did take a nap every day except the days we were driving from point a to point b.  our room was separated from the marina by a small street. it seemed a shame to be so close and not walk over and see the boats.  when planning this vacation we had planned on spending time with ferry rides to the island for some sightseeing and hopefully an encounter with the wild horses.  the hurricane made it impossible for anyone to travel to the islands.  the state ferry was shut down to all except those who lived on the island.

walking a block to the coffee shop took 45 min. to an hour.  with much encouragement h did go out once without me.  his resistance to spending time on his own makes it tough.  i am no longer able to push through and wish we weren’t at this point but here we are.  in a short time we will drive to charleston and already have reservations for our bed and breakfast along the way.  we are both looking forward to thanksgiving with our family.

our next trip is in december, we are going on a cruise.  this should work out well since i can retreat to our room and put my feet up whenever needed.  of course that will be followed by our christmas in charleston.  this was most likely our last extended driving vacation. it had to happen sometime and i certainly have no complaints.  we have had some amazing trips in our years together and have our memories.  when i am experiencing extreme pain we go through those memories together.  it is my hope that although i am at times robbed of words that i will not be robbed of my memories.  if i think about it though, i have to say i probably won’t know that i am without those memories and i have family and friends to help me remember.

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pain in the shadows

July 20, 2012 at 4:13 am (bravery, coping, death, dying, feelings and thoughts, how does it feel to die, pain medication) (, , , , )

if he arrives during the day, most often he is relegated to the shadows.  smiles to cover his unexpected arrival.  so many subtleties to redirect the obvious.  a small smile, little extras to take care of and before you know it not only are they fooled but somehow you have even fooled yourself. or not, maybe you know that in the shadows and late hours he will be back for you.

as a young girl many joked that such a small girl could run and dance before crawling. actually crawling never appealed to me. the scrubbing of knees, dirt and so less freeing as the movement on tiptoe.  yes during this period of parents insisting that pre-toddlers wear these white hard shoes meant to make feet strong and straight.  my feet became strong, straight and they became toes shoes.  running and dancing on toes quickly broke them down.  making them the perfect dance shoes.

marie would lose her temper and pain came for me.  he was kind and apologetic.  it isn’t your fault he would say, let’s dance and soon you will for get why i am here and only trust that i am here and we can do something beautiful out of this ugliness. so the years went by and one marriage brings a new kind of pain, one  not known to even exist before.  his hand reaches for mine. can you run through the basics? what about a little soft shoe?  down by the sea, by the beautiful sea,  you and me, you and me, oh how happy we’ll be!  he has been my friend for many years, more than any other friend.  in the army, broken  legs, broken arms, broken back…. he was there.  he is tall, dark and quit eloquent.

so this morning it is 4:45a.m. and he is here.  he embraces me, he whispers in my ear, would i like to send him away?  we talk about that. what will that mean to send him away? there have been times his   outline is vague and though i know he is there waiting there are times i can not let him have a place.  the wee hours of the morning are the best time to see each other. those are the times he reaches for me. his arm slips around my  shoulder or waist. my head can rest on his shoulder.

it is time to go to bed and there is no room for you.  i will reach out to my husband, put my arms around him. he will slip his arm around me and whisper of our love.  you will have no place in our bed.

someday i will leave you, we will never dance again, my last dance will be with the man i love and the man who has put his all too real arms around me and we will rock a bit and dance a bit and i will seek my ease from him. you have been a part of my life too long.

though I know i have many years of pain ahead and want to keep you as the companion you have long been we will be saying adieu for ever before we know it.


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no crying allowed?..

July 16, 2012 at 2:44 am (bravery, coping, death, dying, family, feelings and thoughts, how does it feel to die, leaving, living, love, truth) (, , , , )

even though I am tired all the time, and feel  as though a nap is calling to me, insomnia is a constant companion.  looking at the clock and knowing that morning is only a few short hours away the frustration builds.  finally it is after 4 a.m. and heading to bed with great hope and trepidation.

in some writings it is described as the “wee” hours of the morning.  it feels like something more to me.  as i lay in bed, and try to avoid looking at the clock,  everything is changing.  the bedroom goes from that pitch black that envelopes you and hides the hidden dangers to your toes and shins.  once in bed, eyesight adjusts and it is the room you know.  the room where you lay completely vulnerable.  this room holds your trust of safety while the body surrenders and the mind embraces the opportunity to dream and restore itself.  the light changes yet not dramatically. is this the wee hours?  as i lay next to my love who gave himself to the bed hours ago.  small snores, legs moving, grabbing and pulling sheets, it is an honor to be trusted with this time, while he dreams I watch.  loving the way his face looks so peaceful and boyish.  even in sleep he reaches for me, kisses my hand, whispers of love.  then turns away to slip back to his dreams.

feeling the change coming and knowing it is going to be full-blown morning soon.  my mind wanders.  asking the hard questions of myself.  all the arrangements have been made and there is a feeling of readiness and a wondering why it hasn’t happened yet.  there are a few things i could still do.  there is something about knowing i have entered that 5th year.  somehow that doesn’t seem like the underlying motivation.  fear is not a factor.  love of life has not changed, yet doesn’t prevent this feeling.

laying on my side, feeling the change from night to day upon me, it begins.  not even acknowledged until it becomes impossible to avoid.  yes, tears have been shed.  not great sobbing or even sadness.  just tears and then some harsh words for the eyes that would dare to betray me in such a blatant display.

from the onset there has been an all out effort to not cry, to not complain, to not impose on others and to make everything as easy for others as possible.

tears were shed and it was hours before sleep came.  no one saw the tears.  that somehow hurts and a part of me wants to complain or really just to be heard, wants to be honest about this weakness.

it is after 3 a.m. and there are new tears, clinging to  the edge, waiting to drop, they will be silent.  i will be silent…….

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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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the rights of the dying, do we really need it spelled out for us?

May 27, 2012 at 3:34 pm (death, death with dignity, defibrillator, doctors, dying, euthanasia, family, feelings and thoughts, how does it feel to die, meditation and pain, pain medication, religion and death, rights of the dying, truth, Uncategorized) (, , , , , , , , , , , )

the following is from another source and is sited at the end of the article.  my question after reading this is do we really need a book that tells us how we want to be treated and that in an ideal world this is how we would all be treated?  these are just some of my personal thoughts on the subject.  we all have some basic human rights and we know that not all in this world enjoy those rights for many reasons.  some it is political, religion or even on the smaller scale it is the world we as a family or community have created.  in other’s there are these rights and more, the luxury of being able to afford such rights.

my opinion is just that an opinion. the book itself may be of great value to some, just not me.  please make up your own mind if this book is for you.  my goal here is just to continue the discussion and not to critique this book in any way.

The Rights of the Dying

The right to be treated as a living human being

* we are born are we not with the right to be treated as a living human being? do this imply we must remind people we are living? in some cases it is easy  for our loved ones to stop asking our opinion about things, usually due to kindness and not wanting us to use our energy on the mundane.  most of us want the mundane. we want to know that we are still contributing on some scale no matter how small.  it is a blessing to me that my friends still seek my advice or opinion. sometimes they just want an ear and that is part of being a friend or sister or spouse.  would you check our account balance or has that check cleared? can you text since i don’t text? can you help? even in the smallest way is just part of being a living human being.

The right to maintain a sense of hopefulness, however changing its focus may be.

*in my opinion no one can take away your hope!! even if it is the smallest hope for the day. this is something that is personal to each of us. to say we can lose that right is ludicrous.  did the prisoners of the camps have the right to hope? of course they did. not even the Nazis and the extermination could take away their hope if they decided to make that part of who they were.  no doctor can change if i decide to hope, and if that hope is not that i live but that i die with ease that is my right too.  do i need a book to tell me that i have this right?

The right to be cared for by those who can maintain a sense of hopefulness, however changing this may be.

*this one is a bit more tricky. by cared for do they intend that medical staff be required to stay hopeful?  do they have to be hopeful for me to receive good care?  if we can focus on medical staff first, it is certainly desirable for my dr. to remain hopeful and to let that change. don’t they also have to be able to be honest with their patient. i for one want to know the real deal and not some fairy tale.  not that long ago women weren’t always told the truth and in fact dr’s could make that decision for the entire family..  sometimes husbands were told and then it was up to them to make the final decision of what the little woman would be told.  my dr. does not have to hope that there will be a miracle for me.  i can hope for what i choose.  as a former nurse it makes sense that an attitude of supporting the patient in what they hoped for would be requisite.  it is of course what we would hope for in family that cares for us.  let’s not mistake what we would like and what may not be an option. if you are being cared for by family they may not feel hopeful.  do we then say they are not adequate caretakers?

The right to express feelings and emotions about death in one’s own way.

* there are rights and there are responsibilities that go along with these rights.  do i have the right to say whatever i want without regard for the feelings of others? this isn’t just a question for someone who is dying. just because you are dying doesn’t give you the right to disregard the feelings of others.  someone who is not dying has the right to say how they feel about their life and those around you have the right to say that is not acceptable to me. if you are hurting someone else with your words how is it so special that you are dying?  the reality goes beyond this, if you were to say to your doctor i can’t take this and i am going to go home and end it all he then has to take steps to protect you.  this may not be the result you want however if you say whatever you want without thought to consequence it may not lead where you want.  telling someone they have the right without explaining the consequences seems a bit irresponsible.

The right to participate in all decisions concerning one’s care.

*this is a patients right and not just for the dying.  you may have guessed by now that it annoys me for someone to “write” a book without having some new or crucial information.  books cost money, people buy them thinking the person writing has some expertise unless it is just a personal account of events/your own life.  it does leave me wondering who is being denied this right? years ago elderly patients were not routinely being asked to participate and since they grew up in an era of the dr. knows best they often gave up this right willingly. it is sad to think this was happening, the good news is our society is making strides in rights for everyone.

The right to be cared for by compassionate, sensitive, knowledgeable people who will attempt to understand one’s needs.

* is this a re-hash of previous rights?  were the writers being paid by the word here? again in an ideal world and we would hope this goes without saying.

The right to expect continuing medical care, even though the goals may change from “cure” to “comfort” goals.

* we have entire specialties now that focus on the comfort.  hospice is the go to for this. they also

The right to have all questions answered honestly and fully.

* we should expect this not just as a patient with a terminal illness.  if we are not getting honesty from those around us this may not be a new problem.  my hope would be that we deal with dishonest relationships before we arrive to this gate.

The right to seek spirituality.

*this doesn’t seem to be a problem now if ever. when in the hospital a chaplain came to my bedside each day.  my issue was the opposite, it was assumed that i am christian and even when i explained as kindly as possible that i am not christian he pushed to come anyway.  he was a nice man and i couldn’t bring myself, even in intensive care, to assert my right NOT to seek his prayers.  oh well, i decided it wouldn’t hurt me so no harm no foul.

The right to be free of physical pain.

* one would only hope but i am here to tell you it may be a right, however, you are going to have pain and will have to decide how you want to handle this as an individual. my choice not to take meds may not be your choice.  pain is a part of living, again this is an individual choice. toward the end many change their mind about the comfort meds can offer. some decide to keep their awareness and forgo that aide.

The right to express feelings and emotions about pain in one’s own way.

*this is just filler. this has been addressed in earlier points.

The right of children to participate in death.

* again not sure why we need to be told that our family has the right as do we to be in their loving presence at the end if that is what all concerned choose.

The right to understand the process of death.

*each death is different and dr’s can give you some information based on previous cases but keep in mind your experience may be unlike others.

The right to die.

* we have the right to die but not with dignity except in a few states.  we can refuse life-sustaining measures but in doing so we give up the right to be pain-free.  those who oppose death with dignity say we can just stop taking meds or nutrition/water. in doing so we will eventually die a long and sometimes suffering death.

The right to die in peace and dignity.

* this is a legal right in some states but not in the majority. this is a shame on our society.

The right not to die alone.

*again this is not really a right as i see it. it is our wish for those who do not want to be alone at the end.  too many do die alone and lonely. until we have a society that does something to change this, it is an ideal and not a reality.

The right to expect that the sanctity of the body will be respected after death.

*if forced to call 911 as you are not under hospice care the 911 team must do everything possible to restore you to life.  that is not being respected as i see it.  we can expect it and need to understand it is a possibility that it won’t happen.  just remember that your family is going to do all they can to ensure this.
“The Needs of the Dying” by David Kessler


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the rolls royce in my chest and other thoughts

November 27, 2011 at 4:46 pm (dying, family, feelings and thoughts, gratitude, holidays) (, , , , , , , )

in feb of 2012 it will be 2 yrs since I had the Rolls Royce of devices planted in my chest.  as I lay on the table waiting for the procedure to begin a man started talking to me. he started saying how lucky it was that this device had recently been found to extend the life of patients with this particular problem. it seems that even though I am a rather good therapist the left side of my heart has been refusing to communicate with the right side of my heart. this has caused my heart to be out of sync and with all the problems it already has this is not good news.  it is freezing, did I mention, in the OR room? it always is, a nurse brings me a heated blanket and she has quickly become the kindest person I have ever met.  this man’s voice is coming from somewhere just beyond my line of sight.  he is saying it is the golden Cadillac, no wait it is the rolls royce of the implanted defibrillator devices.  mine, he says, has not just two wires but it has a third to force my two halves to speak to each other.  yes unlike humans my heart can be forced to communicate in a healthier way. I can’t help but wonder if a little shock now and then would make people open up and talk in a way that moves them forward?  this device I have not only shocks you if and when your heart stops, it is a pacemaker and the real coup is how it makes my heart beat as one, as it is intended to. 

stay with me here, it all becomes clear how these thoughts are connected, at least I hope so.  we have just returned from our brief trip to Charleston, s.c.   coming home is always long and tiresome. going, we break the 7 hour drive into two parts, we stay at a bed and breakfast the first night and then on to our destination. the idea is to be as rested as possible getting there and drive straight through coming home.  it doesn’t matter to us if I need a few days to recover once home.  the memories of the last few days are more than enough to compensate me for the down time.  each year the grandkids get more ….. everything.  they are becoming these interesting people with ideas and interests to share and questions, lots of questions.  of course it is great to see their parents, Susanne ( Chris’ first wife) and Heather.  my relationship with them all has come so far and is so gratifying.  these are wonderful people and I am so grateful for them, I quite literally can die happy now.  there is something about my life that releases me from any angst at what lies ahead for me.  my sister and I have a relationship that makes me proud of us both.  living so far apart can make it difficult to connect but we can pick up as though  no time passed.  it is my great fortune to have friends that feel like family and their texts and calls raise my spirits daily. 

aah the connection?  just a few months ago I decided to have the rolls royce disconnected. not that  I am giving up, I simply  do not want my dear man or anyone else for that matter having their last memory of me involve this device shocking my body even though my heart has given up the call to battle.  in the past my request has been to live a few more days, just long enough for one more memory.  long enough for my grandchildren to know me, love me and remember me.  that is so much and I dare not ask for more when I am so blessed.  maybe it is my optimism that brings me to the point of delaying this decision.  the timing is what I want to feel.  in the next few months it may once again feel like the right timing,  for now I am looking forward to another Christmas with my loved ones.  anything seems possible at this moment. maybe that is magical thinking as they say in the psychology books.  frankly my dear I don’t give a ….  ( Gone With The Wind was on)  it is still my intention to get disconnected, to visit the funeral home so I can do whatever paperwork necessary so Chris does not have to go through the drama of an autopsy.  do people generally know that if the loved one has been ill and under a drs. care an autopsy is not required?  we can talk about that later. now I am going to recline, wait for my heart to start behaving, and dream of all I have to be thankful for.  I hope you had much to appreciate this year, I hope you realize how much you have to be grateful for!

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I ask myself

June 14, 2011 at 2:02 pm (choice, coping, family, feelings and thoughts, joy, motivation, why blog) ()

sometimes I ask myself  why I am doing this. understanding motivation for behavior is what I did professionally for years. one great thing about working with forensic psychology is learning to accept we do not understand what motivates behavior in every circumstance, that doesn’t stop us from trying though. we want it all in a neat package so we can say I would never do … because I am not that kind of person. well I am here to tell you I never thought I would be sharing my most private thoughts with, whoever reads this. It started harmless enough, thinking of it as a legacy for my loved ones after I am gone so they would know how much i treasured them. however, if what i say over and over in this blog is true don’t they know that? I guess my concern is they may look back and wonder what motivated me to make the choices I have. there will be no chance for questions or for them to understand my choices have been my own and no one else has influenced them.

some decisions   have been to donate my body to science, make a living will that prevents artificial life-sustaining devices, to ask for a memorial with music and laughter, along with some others. most of these decisions I believe anyone who knows me can understand. it has helped me to write what I feel as sort of an ongoing dialog with myself regarding these choices. this weekend bill, Kristen and my grandson McGill and grand-daughter Susanna came to visit, it was really for an early father’s day for Chris. heather came up from Atlanta for the afternoon. it was the worst time for me to get sick and so of course I did. a couple of weeks ago I went for a liver scan to rule out liver cancer and I did not get the results until today. thursday night I became ill and by friday was running high fever, lots of other stuff no one needs to read about here, so I made some choices there and then. I don’t regret them and take full responsibility for them. I decided to keep things as normal as possible when they arrived late friday hoping to shake the worst off by the next day. they were going to make early dinner for Chris, and heather brought a great gift for Chris. it was too important for me to not take that time away from any of them. since I have been in kidney failure before by saturday afternoon I was pretty sure this was either failure or something very close to it. my breathing has become almost so labor intensive I can think of nothing else. I start coughing and gasping uncontrollably so you can understand that I am not about to put my grandkids through this. I stayed in the bedroom most of the day, I came out once when everyone was cooking and playing. again later I came out to see the kids and even played with them a bit. several times Chris asked me about going to the ER. I know he would have taken me and stayed with me, I also know they would have admitted me (confirmed by my dr. today). strange as it may seem to some I did not want to do that. it was my choice to give the one thing I could, I could give them the time together without worrying about me. what I got in return, is what motivated me to do that. I was awake some times and could hear the kids playing, the laughter and could even smell the food they were cooking so lovingly. that was their gift to me.

my sister is coming from san francisco and will be here tomorrow. she does not know how ill I have been these past few weeks. luckily she has many friends in Atlanta and when she is not here curled up with a book, chatting with Chris or loving the cats, I will send her on her way to be with those friends. she will return with stories and make me laugh. she has that way about her. she can also just be here quietly with me which is another thing I treasure her for. I wish I were not this sick right now, I wish that we could have had more good days together. I am sure we will, soon, I hope.

so why do this? I do this for me and for them. I want them to know that I do not regret one moment of this weekend or any other time I choose to put them first. by doing so I also put myself first, the ER, being admitted to the hospital, not anything as wonderful as the sound of happy people even if it is in the next room.

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How do you cope with the uncertainty?

June 10, 2011 at 11:25 am (choice, coping, dying, family, feelings and thoughts, friends, gratitude, living)

this is a question one blogger is asking people to answer. she has a chronic illness which has its similarities to (in my opinion) terminal illness that extends past a few months or years. one reason I find this to be interesting;  isn’t life in general uncertain? the writer points out how random good days are and how hard it is to plan from day-to-day. working er/trauma and forensic psychology sort of teach you not to expect anything for certain on any given day. beyond that we all have little things that crop up and change our plans, somehow we adjust.  really I don’t know anyone who is certain about much. have children? well you never know what is going to happen today, make your plans but plan on making alternate plans. every day we experience little things that were not in our plan.

so life is uncertain and death is uncertain. yes I could go to sleep and not wake up but that could happen to someone who thought they were healthy. it is tragic when we hear of a young athlete dropping dead after a game due to an aneurism that no one knew about. the very thing that shakes us is how uncertain life is. if a young healthy person can die suddenly then we are more aware of our own mortality. I have embraced the great mystery of life and know that nothing is promised to any of us. even if you do everything “right” it can turn out all wrong, at least what we think is wrong.

many times I have asked myself would I rather not know my time is short here? there is no right answer to that for me. the fact is I do know and can use that information to do things the way I want. making arrangements ahead of time and easing the way for my family and friends is one benefit of knowing. having this knowledge allows me to treasure each moment and make a conscious choice to create as many memories for myself and loved ones as possible. sometimes I use these thoughts to make my way to the next moment. each laugh shared, each tear, they are all here in my heart and when my body is weak my mind uses this time to remember and plan for the next moment when I can check my email, text, or listen while others talk. I go ahead and plan, just like you do, and just like you those plans may have to change.

Life without uncertainty wouldn’t be real life, I want real life as long as possible. family is coming to visit tomorrow and I am excited, we have plans. those plans may change to accommodate my health. those plans probably will change but I will cope and so will they. next week my sister is coming to visit all the way from san francisco, she knows we will have to plan as the moment arrives. friends know I want to get together and make plans to but realistically they may not happen. so we make new plans. as hard as it can be for me I know that my uncertainty will end and the coping of my loved ones will begin. we will all know for certain that have coped with the situation dealt to us in the best way we could. we know for certain that we love each other. we know that we are fortunate to have this time. we know that life is uncertain and we do more than just cope, we live, we laugh, and we love.

so how do I cope? the same as anyone else alive, by living each moment, and appreciating it.

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nothing new in the truth

June 8, 2011 at 11:28 am (choice, family, feelings and thoughts, friends, gratitude, hope, joy, living, love)

The following is from an email I received in one of those forwards so many of us delete without reading. Since this came from a reliable source (thank you Susanne) I read it. I have seen it before and it just validates for me the way I choose to look at life, and the changes that are happening. The first time I saw this I smiled and thought what a great attitude and I hope I can live this way when things are not going so well. It is easy when you are young and the world is just so bright and old age seems light years away. of course old age is not the only thing that can happen to turn your world upside down. find out you are not going to make it to old age and see if you start assessing life a little differently.

Happiness is something you decide on ahead of time. Whether I like my room or not doesn’t depend on how the furniture is arranged … it’s how I arrange my mind. I already decided to love it. ‘It’s a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do.
Each day is a gift, and as long as my eyes open, I’ll focus on the new day and all the happy memories I’ve stored away.. Just for this time in my life.
Old age is like a bank account. You withdraw from what you’ve put in. So, my advice to you would be to deposit a lot of happiness in the bank account of memories!

for me it is a checklist, literally: first did I wake up, okay that’s a good sign. eyes open, better. feet on floor, very good. husband, check. cats, check. take a shower without throwing up or coughing uncontrollably, doesn’t matter, I am up and on my feet. everything else is just by grace and I appreciate it. even tonight when pain is trying to crowd out every thought and feeling. yes even now I am grateful, I am feeling which means I am still here. my mind is as good as it has ever been, not sure what that says about me:) the absolute wonder of it all is the memories I have cannot be touched by even this pain. our Charleston family is visiting this weekend and I am going to rest up so we can make as many memories as possible. each time I am with them or even talk on the phone I am for that time not in pain. oh pain is there and trying to be heard, to push out the joy but I choose not to let it. who knows if that will work in the future. if it doesn’t I will find a way to adjust. I have already made up my mind. this disease will not decide how I love and will not tell me to stop making memories. it has been my privilege to be a part of many happy hours, days and weeks with those I love. as I sit here I can remember the first time my sister, who is 14 yrs younger than me, smiled at me and twisted my heart around her little finger. there are too many to write about here but I have been graced with much joy and love in life.

joy is an important part of our life and we can choose to have it. are you happy? make your list and be aware of what makes you smile inside and out. don’t let the days pass without that smile, it is your choice.

to clarify my last post I want to say it came across a bit whiny and that was not my intention. I worry about the people I love and know this is a bit of a rollercoaster. some days the news could be better and then it will be better. I worry about the toll it takes on others joy. recently a friend confided she felt she shouldn’t complain, she said compared to my problems hers were nothing. this is the kind of issue I want to avoid. my husband has said the same thing, and I understand what they are saying. however, to me it implies I am unable to have compassion for others and it is all about me. the truth is I want to be as supportive to them as they are to me. let’s not compare scar’s. another persons pain is as real as mine and I hope as long as I have a breath I will want to comfort others and be supportive of them. love doesn’t stop, not now and I hope not in my lifetime.

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“How To Die In Oregon”

May 28, 2011 at 2:57 pm (choice, death with dignity, dying, feelings and thoughts, hope, how to die in oregon, living) (, , , )

if you missed the documentary How To Die In Oregon I hope that you will take the first opportunity that you get. for me to be “in the room” with Cody who is almost the same age as I am and hear she has  some of the same feelings I do was a rare moment in time. we did not agree on everything but to hear her express her desires and fears and that thing that someone else can’t grasp, the guilt of taking too long to move on. I completely understood that feeling of not wanting to make it harder on her family and concern when she seemed to pass the “deadline” (sorry no joke intended) for her own death she felt guilty. I do not feel that way but understand it. at some point I am concerned about the ups and downs of my own decline. a few months ago things looked pretty grim, no real improvement took place but I settled in to this new norm as I have in the past.  I am active in finding ways to understand my disease and work with it. stopping one medication will not stop the illness but it gives me the feeling of some small control still. if there is a chance stopping this medication will give me more time then I’m for it. the fewer drugs I have to take the better I like it anyway. not that I am opposed to medication and will definitely take meds that help without harm. in the end Cody decides to exit her life. in Oregon this is legal. the dr. writes you a prescription and you must fill it yourself and though a professional mixes the cocktail the patient must be able to drink this mix on their own. before drinking they are asked if they understand what is going to happen and must be able to express that. they are reminded that it is their decision alone and may change their mind any time prior to drinking.

some people filled the prescription but never used it. these people either waited too long or just decided to let nature take its course. either way it is their choice and I wish that our society was more open to the idea that a person has the right to decide for themself if this is right or wrong. many people say we have too much govt in our lives but in a case like this they want the govt to tell a person who is suffering if they can end their suffering. it is far to large an issue for me to address here. I know that some are going to be very upset by the idea of dying with dignity. who is to say?

on the Facebook page for this documentary so many have already left messages about how touched they were and how beautifully done it was. Cody was mentioned over and over even though she is not the only person shown. she is on longer and more detailed. the one person I thought did not get the recognition he deserved was the man with prostate cancer. he was so angry because he had been diagnosed with cancer, received chemotherapy and the cancer had returned. he had been given 6 mos to live and wanted more treatment. the insurance company would not pay for more as it would not extend his life by 5 yrs. after much publicity they decided to cover him and he still died. he had received a letter that stated he was entitled to palliative care which is hospice and end of life comfort. the fury he felt that his life was not valued by the company was palpable. as much as I supported Cody’s decision to exit life did he not deserve the same support in wanting to fight to the end for his extension of life?

whether someone with a terminal illness decides to end their life or go out swinging is up to them. all the rest of us can do is love them and try to understand what they are going through. this documentary gives everyone a rare insight into how someone who is dying may be feeling or thinking. it is important to recognize though that this documentary has an agenda. as do they all, it is to inform the public on a specific topic. they can not and do not represent all people with terminal illnesses. after my appt today Chris and I were talking and we are lucky to be on the same page with this. we are staying hopeful. we are not unaware of the reality of my situation but we will continue to be hopeful until …. actually maybe it is what you hope for that changes not that you hope.

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