barnes and noble with a side of life

May 31, 2012 at 8:32 pm (coping, family) (, , , , )

Barnes & Noble is as familiar to me as my own home.  to the right are rows of stationary and journals. they are displayed with great care. slowly browsing the glittery covers, the leather-bound, some spiral bound, as much variety as the seekers could want. so what does it say about me that i choose one made of  plain brown recycled paper? it feels like a good fit to me.  my life is sort of plain  and recycled.  being plain affords me the opportunity to observe without alarming the beauty around me.  while some gain energy from the attention or spotlight it has always been the opposite for me.  hearing other’s stories, watching other’s lives unfold, even in my last days this is what transports me, perhaps it is what holds me here.

as reverent as a true believer entering church and expecting a miracle, it begins.  a young girl on her cell phone, speaking a bit too loud, seeming to invite all present to witness her one-sided play.  she will not be attending the prom with that cheap blah blah blah….   wandering off to share with other’s her continuing tirade.  her conversation is punctuated with laughter easily mistaken for a bad laugh track, a bit too loud and forced.

laughter from a young couple leads me down the sci-fi aisle.  there are giggles shared in these early moments of love. the private jokes, the teasing. “promise if i buy this book i am not going to hate it.”  ” i swear you are going to love it.”  they glance at each other and move closer…. then like frightened gazelles realizing they are not alone, dance over to another aisle. my breath has caught in the memory and the beauty of those first love moments. our own first kiss at the Tower Book store. one kiss and we were on our way to many more.  it surprises and pleases me that you still remember that day, that kiss, as i do.

unkind words, muttered by a man leaving the  christian book section, as he crosses the path of the young couple as they encircle arms to protect each other from the homophobic assault.  sad in this intrusion on civility, our sanctum has been breached.  they are already at the astrology section and laughing again.  they are leaning into each other, i am grateful to have witnessed this moment.  my own love is just around the corner in the history section, he shares a tidbit and then a stolen kiss. although all my kisses are freely given to this man. this man who loves books, would never say an unkind word in judgement of others.

i am an observer.  this has been one of my joys.  we recently visited family in oklahoma and it was a chance to hear the stories and see my love as he is with those who have been a part of his life before.  next month we will be in charleston and the bahamas family will be there. it is another opportunity to make memories and to remember how delight can rush through your whole being at moments like these.

too many don’t observe their own body and what it is telling them.  even in my desire to observe others i continue to observe my own state of being.  he was watching and waiting to see if we could really make this journey. it was “not advised” that i fly anymore  and though my habit is to take life as it comes it would be foolish not to listen to my body.  as mentioned in previous blogs meditation has been of great benefit to me.  listening and controlling my breathing, remaining calm as it becomes harder to breathe, this helps me for the short flight.  holding his hand, looking at that face, this helps me.

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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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TSA and the defib

May 27, 2012 at 3:04 pm (Uncategorized) (, )

just wanted to share with anyone who has concerns about traveling by air with the defib.  we arrived earlier than advised ready for delays due to the defib.  card in hand identifying that i do indeed have a defib and ready for a wait followed by the pat-down.  this would be my least favorite choice for going through security.  as it turned out the TSA agents were well versed in the do’s and dont’s so it was handled with amazing ease.  after emptying pockets, putting bag in bin along with shoes, i was given the choice of the pat-down and the walk through x-ray.  no brainer for me! walk into machine that looks like the push through at classy hotels and one of my favorite things. raise hands to head level and about 5 seconds later i was on my way.  the agents also diverted a few people to go behind me and it made my feel less conspicuous.

all in all it was a pleasant experience.  assistance was there with a smile and i did accept the ride in the wheelchair. at no point did i feel like a burden to anyone and that was of concern to me.  one thing about this experience has been to learn about myself and how i move through the world.  it has always been my goal to move with the least disruption to those around me.  for someone who has jumped out of planes, fell off a cliff in defense of fellow soldiers, raised to be as inconspicuous as possible, this has been a challenge and an opportunity to be a better human being and learn how to move in a different way.

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it’s really about living

May 17, 2012 at 2:17 am (being remembered, dying, how does it feel to die, living) (, , , , , )

yesterday we went to a little restaurant in town and we know a couple of the servers pretty well.  one is a lovely young woman who recently graduated with her BA.  she wants to be a writer or at least that seems to be her goal at present.  after being through a particularly difficult period we had gone to the grill for dinner and the conversation went to  why we had not been in for such a long period.  for people we have a long-term acquaintance with it seems fair to mention that one day he may be on his own.  for me it is another attempt to protect him in future.  if people know, then he will not have to explain what has happened. it will be enough that i am just not with him.

she is working as a ghost writer for a couple of online companies.  the hope is to someday write her book and we believe she will.  there has been mention of this blog and the content.  after speaking with her last night I realized that if asked my brief reply is, it is about dying.  on the way home i wondered why i referred to it  in that context.  yes, in my mind it was going to be about what it feels like to be dying.  my hope was to let some light shine on the subject.  having cared for countless terminal patients, during my nursing years, many expressed regret at not talking to their family more about what they were feeling.  this is an opportunity to share after i am gone.  in reading this he will be re-assured that i adore him.  anytime he wants he can read these entries and know that i felt blessed to have such a gracious loving man.

even as my thoughts are forming, an outline of activity or inspiration for a new post, the act of living distracts me.  there is more about life here than death and that is maybe the key for me.  this is more about continuing to live the life i can be most proud of and to ease the road of life for my loved ones when they are on the road without me.

from White Elk:

when you were born, you cried and the world rejoiced

live your  life so that when you die the world cries and you rejoice

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another mother’s day

May 13, 2012 at 3:21 am (Uncategorized)

a year? really? another year has gone by and I am still here? how is that even possible?  that is a bit like asking how a magician has been able to trick us  into believing the impossible.  when we ask do we really want to know? do we want to spoil the illusion? magic has been a delight and a fascination that inspires me to believe the impossible is indeed possible.  learning the mechanics of such a feat has never interested me.  this is rare indeed for me as I am fascinated by all things with desire to understand puzzles of all sorts.

last year it seemed improbable if not impossible to consider living another year.  yet here I am and while I am so grateful for this time it concerns me what this means for my family.  how is it for them to go from a time of emotional lows such as then to the highs of today? is it damaging to them?  there are times i become frustrated and think if this is end stage and most agree this is the time to have the those final arrangements in  line then what am i waiting for?  sometimes the waiting is so much more stressful than expected.

the mother is dying. this is giving me a look at the stress my  illness may have brought to my own family.  youngest sister wants to make it all as perfect for her mother as possible.  she waivers from wanting to do it all to wanting to turn her back on the whole dysfunctional fiasco that is called the sacramento family.  she has carefully woven this beautiful flowing life of friends, work and love.  much as i have done here in georgia.  we were the lucky ones, we escaped.  now and then we feel the tendrils trying to pull us back in as they wrap around us and pull ever so gently and when that doesn’t work, not so gently.  do i want my own beloved family to go through this? never!  am i doing everything i can for them? is the more to do?  how to ask?

the family that has become my own knows how much i love them all. is love enough to protect them from the road ahead? it is love that will give us all the strength to get through this.  the last few days much has  been discussed, what to do about the problems in sacramento, what to do for my birthday and the pain of being the one left behind.  some if not many would be surprised at the one big fear i have and acknowledge.  it would be my worst fear come true if somehow husband went first.  although he becomes dewy-eyed when speaking of being left without me it is i who can not even think what life would be without him.  it may seemed obvious to some that with  20 yrs head start on me that the future was laid out.  we have always known this was not going to be.  when we first met I had my second heart attack and he was at my side throughout the whole ordeal.  for several months it was trips to the emergency room with dr’s trying to prevent the inevitable and then it struck.  while in one of my graduate classes it struck. waiting until the class was over and then going to the er.  being admitted and staying at UC Davis hospital while tests were being run.  he was there through the whole thing.  he was there when the drs said it was sad to see someone so young dying and so little to do about it.  we knew it was not if but when. as the years went by we thought somehow it wouldn’t be true.  yet we always knew it was right there just waiting for us.  he will be sad but he will go on. he has his family to love him and help him move forward.  it has to be this way and i am not sorry for that.  there are few things in this world i would be afraid of and being here without him is number one.  whenever it comes i will be grateful it is me first.  if only i can find a way to make this as easy as possible on those i love.

for today i am just going to be grateful for another year.  another day, another hour another smile from that face i love.  beautiful roses from my love

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the costco philosopher

May 8, 2012 at 2:43 am (Uncategorized)

as we were leaving costco, husband had gone to get car ready for the year supply of paper goods and such, robert ( the exit man) asked if I was ok. I was walking very slowly which is the speed I do just about everything at now.  when I said,  I had not been injured he looked at me as though waiting for the answer to his unspoken question.

being regulars at costco we have gotten on a first name basis with many of the staff there.  one woman even advised us on the ring for valentine day.  she was right by the way and it was his first choice too so it had to be right.  robert’s wife was laid up for a period of time with surgery.  we would ask about her and got regular reports on her progress.

so it seemed natural for him to ask about my own status.  with little ado i told him i have congestive heart failure.  it was so simple to say the words and yet it has taken me some years to share this with anyone other than family and close friends.  it can change how people relate to you once they know.  some just don’t know what to say so they avoid you, some think you are not really that ill and make remarks to let you know that is what they think, so i avoid them:) robert looked sad when  i told him and in my attempt to make things better i added that i have a defib to start me back up if i stop ticking.  meaning it as a bit of reassurance. with a clear look right in my eyes he said “yes they can do almost anything now. the question is do you want it to be started?”  yes he said it.  inside i wanted to thank him. he said the one thing that no one else wants to say or maybe they just don’t get that part of this.  he is a kind man and it came from his heart.

i had to go to costco, to hear what i thought no one understood.  for the past several days i have been so sick i couldn’t have told you what day it is.  the whole weekend i ran fever and my back hurt from my kidneys.  the pain from my liver was almost unbearable.  do i want it to be started if it stops?  that is a great question.  it is one that i think i know the answer to but wonder if we ever really know the truth until the time comes. we often think we know who we are and how we would handle something. then we are tested and either find we were right or we come up short.  some of the hardest words i ever spoke were when my grandmother was dying and as i left the room she looked at me and seemed to be asking even pleading with me, so i said the words ” it’s okay mama. you can go and i will be ok. i love you always.” there is not one day that goes by that i do not remember her or the way she nodded and closed her eyes for the last time.

it is my hope that you can do that for me when the time comes.

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