tonight

October 22, 2012 at 2:30 am (dying, family, how does it feel to die, moving forward, shackelford ponies, the dr. says) (, , )

has been a tough night.  for some reason my feelings have been as they say “on my sleeve.”  we did watch a movie that turned out to be a bit more sad than we expected.  i noticed the tears and took his hand, it seemed better to let him have his moment and take my cue from him.  we spent the next couple of hours just relaxing.  when he was ready to go to bed he asked “how are you?”  my response to this question has become so automatic with barely any thought, “i’m fine.”  a beat or two go by and then “if being exhausted and in pain all the time is fine.”  what came next made me walk away. “i should stop asking.”  it wasn’t his intent to sound like he didn’t care, i know that.  this was my first clue that i was being overly sensitive.

next i was looking at facebook, which i still don’t know why i am on, and saw some pics that had been posted.  this isn’t the first time i have felt a bit sad when looking at pictures being posted.  facebook has been a great way to keep up with my friends and loved ones, it has made bad days bearable.  seeing the family photos, fun in the sun, and of course the adorable babies (furries included).  tonight seeing all the love and fun that i am not a part of anymore was like ice water and a white hot knife all at once.  to realize that these are people i thought would always be a part of my life and now i question if they ever were.

what is my part in this?  whenever patients would talk about problems with other people, whether it was work, friends or family; my question was “what part do you think you played in this?”  if you can say, honestly, that you did everything possible then move forward.  if all my friends had moved on it would be obvious that the ball is in my court.  that is not the case here.

many people with long-term illness or long-term terminal illness relate to what is happening in my life.  in other blogs it is a familiar story.  from spouses to parents, the question is why. why do these people stop making the effort? the caretakers want to understand and know what they can do. sadly there is nothing the caretaker or even the person who is ill can do.

tomorrow i will have my feelings under better control. tomorrow i will be fine. i will leave it as fine and not be whiny.  tomorrow my sister will be here.  this time next week we will be on our way to the coast.  it may be time to evaluate if facebook is a good thing for me.  if you have people or  things  in your life that are not making you happy maybe it is time to ask yourself the hard questions.  what does it say about them? why would i even care about being friends with someone who is so shallow? who drops a friend because they can’t be as entertaining or spend as much time running around?  i want to spend my last days with people whom i respect and know what they are made of and where i stand with them.

tonight is now early morning and my sister is coming today.  next sunday we leave for the coast.  we will laze at the beach, watch the wild ponies, visit the lighthouse or just be together at the beach.

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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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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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Back to the list making

March 21, 2012 at 11:26 pm (angina, coping, death, defibrillator, family, Uncategorized) (, , )

so I have had a couple of days to think about what happened the other night.  after seeing the video about the man being eaten by the orca and then immediately hearing about my friends brother, it was really just overload.  my emotions seem to be affected more lately. everything I read says that happens, however, I had not experienced it so maybe it was wishful thinking but there you go I was hoping to avoid this one. would it be so much to ask?  just one little symptom.  there haven’t been any complaints from me to this point and not to be a baby here but I have suffered some fairly intense pain and without much fuss.  so far it has just been the annoyance of canceling an event or evening with friends or family.  sunday we were going to have the occupants of the moonshine mansion over and had to cancel.  it worked out well in the end as something unexpected came up on their end as well.  monday was a total loss and yesterday was not much better. 

tonight though we had dinner with our friends and it was so enjoyable that even the pain from the angina could not bring me down.  my sister Angie called earlier and we gabbed a bit.  I told her about the video and the friend’s brother.  it occurs to me the statistics may be right and we are wrong. maybe I am not going to be the exception.  research shows I will not live to see year 5.  February marked my 4 yr anniversary.  my angina is now unstable and that is not a good sign. it moves me closer to setting a date to have my defib turned off. she asks if his was off and i say no.  she says this time next year I will remember this and celebrate that we are right, I will make it. 

this brings me back to my list making.  i have a clear understanding of what his stuff means to him, that is not the issue here.  he becomes overwhelmed and as he gets older it is harder for him to lose anything.  even a sock.  he was cleaning out drawers ( I have to laugh here) and as i came in the door a single sock flies across the room and into a drawer that was supposed to be the object of his attention.  why keep one sock? i may need it.  honey really?  okay the other one is in there.  show me.  no.  please show me. no, you can take my word for it.  please just show me. okay, there is no other sock.  then maybe you can let this one go?  for you.

if he can not part with a sock how will he part with my things?  so I try not to collect anything he will need to decide about later.  my hope is our girls , all of them if need be, can help him move through this difficult time.  one other way of handling this is for me to designate people to receive certain things.  i am sure there is going to be a lot of “what the hell?” and she must have been kidding when they see the list. all I can say is I hope they keep their sense of humor!  this stuff has to go to people who will do with it what he would not be able to … let it go.

back on track and making my lists again. there are still some things to be done.  in between we are still living life to the fullest.  tonight my love said I will make it longer than anyone expects because I am loved.  i know he means to encourage me to stay positive.  the truth is people die everyday who are loved. people who have a great support system and the money to buy the best care possible.  this is another gift i enjoy, we have great insurance so that isn’t a problem.  just knowing there are no worries about money and seeking medical care gives me an advantage that so many don’t enjoy.  we all deserve it. everyone deserves to have the best medical care and not have to worry about the bills or can they even get in.  we do live in a great country but we are not done! we have far to go.  maybe if our elected officials would be required to make a to do list and show it to the public we could judge them on what they are actually going to do in their service of us.  they are supposed to represent us aren’t they, I mean all of us. not just the republicans and not just the democrats.  ok I am way off track here. 

my life will be gone in the blink of an eye. if no one is looking will anyone know? will I be missed?  these are questions that come to me and then I think …

why would people not want to have healthcare for everyone, how can people be better informed about hospice care and what about that Rush Limbaugh calling that girl a slut and saying it is “entertainment”   these issues will be here after i am gone.  they seem to move me from the small world of me to the real world of us.

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the dr. says and it is what it is

January 8, 2012 at 8:11 pm (choice, end stage congestive heart failure, family, the comeback) (, , , )

we are in barnes and noble.  it is our regular friday date on saturday.  first to the atlanta bread company for soup and 1/2 sandwich. then on to the b&n.  we love book stores.  when we lived in Sacramento we browsed all the used shops as well. one was like a scene in a movie, the fat old orange cat that hangs out on the shelves and no one complains of the hair on the books or that they are allergic.  it is almost too perfect to be real. this life I have is much like that at times. 

when I was young, and there was so much anger in the house where the mother lived, I would walk about a few blocks and look from the sidewalk in to the windows of these homes where scenes were being played out like some movie. or so I thought, seeing families that looked happy, or what seemed peaceful, was what I longed for and hoped for.  living with my grandmother had been the greatest gift the mother could have given me.  bringing me back when my youngest sister was born was her second best gift to me.  until then, the moment of holding my baby sister, I am not sure I knew how to love.  of course there was love and gratitude to my grandmother, she was not a warm fussy though.  holding this baby brought out something in me that made me a better person.

we are in b&n, I received a text from a friend asking if I felt better.  simple and kind question.  yet I am here at the book store and I am shedding tears as I try to answer this text.  yesterday I was at the dr.  a couple of weeks before thanksgiving my health became more of an issue.  what that means really is that I am feeling worse than usual.  or at least my old usual.  telling myself that it is just all the activity and when I have adequate rest things will be back to normal.  the last few days before going to Charleston I cancel some plans. nothing must keep me from Charleston.  in Charleston I am telling my granddaughter that I am happy to be there and see her, she asks if I am happy to see her brother too.  having been prompted I decide to give her the full list of who I am happy to see.  the first wife is sitting with us and when I say her name there is a moment of surprise on her face.  it quickly moves on and she thanks me.  it is true and I am happy to have the chance to say it.  she is a kind woman who has been gracious to me.  she is the mother of my step-daughters, they mean so much to me. maybe more than they understand, I hope not.  Susanne made the decision to be kind to me.  one night while in Charleston the step-friends were talking and the subject of getting along with your step-parents came up.  it was a great moment to be talking about this and sharing how we all decided to make the best effort.  for those who choose not to, I am sorry.  they are possibly missing a great opportunity.  it has been very meaningful for me and I hope for them too.

I move to the bathroom as not to be seen.  I am not exactly crying but tears are being shed.  this takes me by surprise.  of course the conversation or really more what was not said changes things.  this is my new normal.   I will not be feeling better than this.  still all in all that is not the worst.  it could be worse I tell my husband.  that is what I say today. yesterday in the coffee shop, after the book store, he is saying he cannot imagine life without me.  I reassure him we have time and he will not have to imagine it for a while longer.  no one knows how much  longer..  it has been 4 yrs with a 5 yr. deadline. 

who knows what can happen in another year?  another birthday? another anniversary? another holiday season?  maybe not and then again maybe I will be the one to break the statistics.  Steven Hawkins has been living with Lou Gehrig’s disease and is now 70! I knew a woman whose husband was diagnosed and passed in the next few months.  her husband was ready to go, he told me he just wanted to have it over.  it was heartbreaking to be in the room with him and hear the voice of giving up.  I will not give up, I will keep hoping.  “expect the best but prepare for the worst” this has been good advice. 

sometimes the words don’t have to be spoken.  it may seem odd to some that after the dr. appt we did not have some long heartfelt talk about what the dr. said.  as a matter of fact husband went off to play poker, a friend of mine came by with a pizza and we just hung out and enjoyed the evening.  there has not been a sense of urgency for the most part.  at times I worry I have not had that sense.  it has been helpful to read and share with  Shane Hodges the author of the “comeback.” to know that his mother’s words have made such an impact on him and he on countless others.

his( shane and his 5 rules outlined in “thecomeback”) third rule has been one of my life long philosophies, it is what it is.  acceptance is not defeat. it is the realization we sometimes need in order to move on or to deal with what is in our life. 

for tonight, I will treasure the day spent with my step-friend at the movie and go sit with my cats, husband and a cup of tea while watching PBS.  life is good, don’t ever forget that.  I am on the inside now and it is peaceful here.  think I will stay awhile:)

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love is…

December 27, 2011 at 2:29 am (family, friends, holidays, love) (, , , , )

this was my status on Facebook for the past few days. think everyone had an opinion? you would be wrong as was I.  2 brave friends stepped up to comment on this subject.  some may have been too busy with the holidays or just not sure how to respond.  my sister made the interesting observation that love is power and many of us know that power. it is not used for good as much as one might hope. the other response was that it is unconditional and we have heard that and hope to believe it but is it true?  my guess is there are many conditions on love or we would not have a 50% divorce rate, we would not kill our spouses and children, would we let our elderly be neglected if we loved unconditionally? no I can not as much as I would like believe in unconditional love. 

some of us have learned the hard way that unconditional love that is not returned but used as power for one person over another can be the hardest of all betrayals. 

this is in no way a recommendation, if you find yourself with a long-term terminal illness you will certainly learn what love is and who in your life values your love.  these people are not the ones who toot their  own horn and make a  point of telling anyone who will listen how much they love and how freely they give of themselves.  these are the people who may truly love unconditionally.  when you are throwing up they are holding your hair, bringing you a wet towel, being the laugh or cry you need to have. 

the man who shares my life and love gives of himself in this dependable and free way.  the younger sister, the 2 step-friend (step-daughters) and even their mother has a kind of love that she has shared.  there are friends and friends that feel like family that too is love to be treasured.  the love of grandchildren is like non-other and can not be compared to any other type of love. 

love may not always be unconditional, it is a gift given.  over the years I have asked myself if I am lovable or worthy of love, this is a question I still ask of myself,  knowing what a priceless gift is being given I truly want to  be worthy of such a gift. 

another holiday season has come and is going, my season may be coming to an end.  I have been more tired and pain has been more of a companion than in the past.  I feel like the girl who sings she could have danced all night and still have asked for more.  I will not ask for more but I have certainly danced all night for several days:)  it has been a wonderful time and going home on a cloud of music and love leaves me hoping for more!  if there is to be no more dancing I will dream and treasure the memories of  shared love, laughter and decisions made not to waste another dance on people who drown out the music.  yes ang I mean you!  others will carry on the joy of this dance of life for me and that brings me such pleasure I can only smile at the thought.

until we meet again, may you hear your own music, share it with those who are worthy of your love and define what love is for you.  don’t let anyone else define who you are, who you are not and what love is for you……

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this too shall pass….

December 20, 2011 at 10:31 pm (family, friends, holidays, hope, Uncategorized) (, , , )

one moment I am asking how much fun can a girl have and get away with it, the next I am getting the answer.  the last few days have been so much fun, seeing friends, getting out and just feeling normal for a while.  last night just before some friends arrived at our house I started feeling the physical toll that can sometimes come on so quickly I get whip-lash.  then they are at the door and life fills the room.  there is no room here for thoughts of anything but sheer joy.  baby g is dancing, tinliz who arrived in a funk seems to be breaking through, hd, or the baby mama, is looking tired but appears to be happy to be here with us in this moment.  k is her usual sweet self and it is easy to put worries aside for this time.  this moment, this memory being made.  every fiber of my being is warning me, how can I listen now?  now I am rushing toward happiness and the kind of love and contentment that feeds the soul.  this has been my hope and my goal all year-long, another holiday with my family.  whether it be one more or … the important thing is it is another year. another opportunity to love and be loved. 

so I have to believe that this will pass, the truth is even if it doesn’t I am happy.  hope lives here, here in my heart.  it is not the same kind of hope experienced a few years ago. it is so different as to be almost unrecognized. much like an old married couple who has loved for so many years they have not stopped to think of how their love for each other has become so much more than it was in the beginning.  my hope has become not that I will live forever but that I will live in the memories and hearts of others for their forever.

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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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