is this un-nesting?

September 4, 2012 at 12:57 am (choice, coping, heart failure and exhaustion, the dr. says) (, , , , , )

since last week it has come to my attention things are progressing here. this is as it should be and yet my hope keeps me moving forward each day.  just walking from one room to another can bring on exhaustion. lying down in bed is difficult.  as soon as my head starts to lower my breathing becomes strained and then we have gasping for breath.  it can take up to 20 minutes to get settled.  now i never go to bed before 3 and more like 4 or 4:30 a.m.  my man goes to bed around 10 on a normal night.  more often he is trying to stay up with me a bit later.

can’t help but wonder if  i am stalling here, sorry.  so the pain is worse, when it is my liver the pain obliterates all other cognitive activity.  my love recommended i go to the dr. or the ER in this circumstance.  my choice is to hang tough and see what happens.  if i go to the ER i would surely be admitted and that is just a waste of time and resources.  i have worked in ER’s and know what kind of issues they have.  what would they do with me anyway? they would be happy to let me stay a few days.  we have very good health insurance. i have watched people at the end who struggle with their diagnosis and keep going in thinking by some magical dust everything has been changed and they are going to be fine. i am just not that person.

saturday was the worst in some time. i decided to make a stew that would feed him for 3 days.  suddenly i realized my mode was much the same as the nesting phase when pregnant.  grabbing up a stack on the end table, off i go to file papers and work on photos.  it is my goal to have all pics labeled so they can be identified.  asked my darling to sweep and pick up. even though the pain was growing every minute felt another peak climbed and i just wanted to plant my flag in that stew!  at last i felt not only that i had to but i felt i deserved to sit and relax.

at some point i stopped and listened to the voice in my head and my body. both seemed to be telling  this time was different.  that part is the hardest to explain. the difference felt as though i am leaving for a trip and trying to get some last-minute things done.  there is a sense of what is coming.  my goal is to have things in order here so things can be easier  for him.

i am not afraid of death, i am not afraid of pain.  i am afraid of forgetting something and not being able to let him know what it is.  like an artist with a painting they can’t seem to finish.

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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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is this word overused? and what is bravery anyway?

July 18, 2012 at 2:35 am (angina, bravery, choice, coping, death, end stage congestive heart failure, how does it feel to die, Uncategorized) (, , , , )

how often do we hear this word?  at times it seems ridiculous, a neighbor gives her beloved shitzu his oral medicine and he is “such a brave little man.”  even the child obeys the command not to whack his sibling is brave.  we “brave the storm”    to a performer it is to stand up on a stage alone  with an acoustic guitar requires bravery bordering on heroism. Bordering on insanity. Richard Thompson   to the writer of great works – Curiosity is one of the forms of feminine bravery. Victor Hugo.
so what is bravery really? curiosity is not my ideal of bravery, however, there was a time in our history when an inquisitive mind in the female form was definitely stepping into a new and challenging arena.  the men and women who fight our wars, are they brave? the person fighting the odds against a devastating disease?  what about the loved ones of that person? aren’t they brave?  if someone decides to go to the bitter end are they brave?  what about the one that decides to spare family and loved ones?
big girls don’t cry? is it weak to show how you feel? sometimes the boundaries are blurred and though it would not be my intent to make others uncomfortable i know that showing weakness would do just that.  now i am the brave one, that could change so quickly.  to add to the dilemma though some say cry if you feel like it i am under no delusions here that it would change things.  no one wants to be around that person who says the truth about how awful this really is.  to know that your time is running out and deal with that little nigle in the back of your brain that says go ahead and make that  plan, yeah go ahead and make that plan.  when the time comes and you can’t get your body to move, the congestion (accumulation of fluid) in your organs makes it hard to breath, gives you chest pain along with the exhaustion, your running fever and hoping it isn’t your kidneys failing, you can have the embarrassment of canceling those plans.
of course this goes beyond a lunch gathering or brunch date with family.  the disappointment reaches to vacations, hair appointments, grocery shopping and so much more.  yes sometimes it all becomes too much. then you remember how brave you have presented yourself to be and know that it is more important than you would hope.  can’t cry, must be brave.  just please someone tell me what bravery really is.

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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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Aimee Copeland leaves the hospital

July 2, 2012 at 11:57 pm (aimee copeland, choice, coping, creative writing, good news, gratitude, hope, living, love, motivation, optimism, support system, why blog) (, , , , , , , , , , , , )

yes Aimee went to rehab today and she will be there for 6-8 months.  I hope she continues to be optimistic and her support system stays in place.  maybe that is what really makes the difference.

looking back it occurs to me that my blog has many entries focused on others without much tie in to myself.  with some reflection, really not that much:), it is clear how that has happened.  my life has been about others.  as a nurse, there is the patient.  as a therapist there is the patient and even as a professor/teacher it is about the students.  most of us have others in our life that we give our love and support to.  mom’s and dad’s  have children, spouse’s have likewise, children have parents that may need their care.  parenting never ends if you are lucky and then there are the grandchildren.

there has been little time to think about my own situation.  situation is an odd word for this, not so odd if it is understood how i refer to my multi-system failure that landed me on life support in ICU as “the event.”  it seems tedious to refer to the event in medical terms or what would feel like a bit of melodrama at this point.  although when i read of others and their struggles it reinforces my belief that we all have a story.  as we go through our day we have a choice to have faith, or spin in uncertainty that can make us suffer beyond our physical self.

recently though I have had things on my mind to write about, however, two things stopped me.  one is the awareness of how this blog has changed from its original concept. second, is the awareness that i am not a writer.  it’s ok. to know what our gift is, is a blessing.  when reading other blogs i am in awe of the creativity and flow of the story.  the new goal for me is to remember and follow my true purpose in writing at all.  as for the other it is my intent to be ok, really ok, with my limits as a writer. this was never meant to be anything more than a personal blog.  future posts may be boring to some who now read my postings.  there are so many more interesting people out there.  those that become bored please do not feel the need to comment on said boredom.

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Aimee Copeland Breaks And Pleads For Painkillers

June 28, 2012 at 3:07 pm (aimee copeland, bravery, christina symanski, coping, death with dignity, meditation and pain, pain medication, Uncategorized) (, , , , )

for weeks now aimee copeland has been in the news.  about a week ago the headline for the Huffington Post stated that Aimee had  now asked for the morphine doctors had been offering her for the pain she was experiencing.  here is a little about her if you  have not heard before now. though her father has not characterized her decision as “pleading” that is how the headline ran.

It was nearly seven weeks ago that Copeland sustained a cut on her calf during a fall from a homemade zip line over a west Georgia river. She was diagnosed with necrotizing fasciitis, an infection from a rare flesh-eating bacteria. Doctors were forced to amputate her left leg, right foot and hands. The Georgia student, 24, originally refused pain medications due in part to her personal convictions and graduate-school background in holistic pain management techniques. Her preferred method of dealing with the pain was meditation, but that has done little to assuage the sting of skin grafts and muscle flaps that were necessary

“I am blessed to be able to have a challenge that not many others get to have,” Copeland’s father wrote, quoting Aimee. “I am blessed to have the capacity to share my experience with others and have a chance to improve the quality of someone else’s life. I’m blessed to be different.”

when reading this short article my mind wandered back to the young woman who through an accident of adventure had become a quadriplegic. this young woman had been sort of the poster girl for the disabled.  she was an artist, gave speeches, was active in the christopher reeve organization and seemed to be moving on with her life “bravely” as some might say.  tragically she ended her life.  she decided her life was not worth living the way it was.  she was in pain and yet it would seem the psychic pain was perhaps the breaker.  the organizations for the right to die with dignity used this as an example of why we need to change our laws.  the disabled were outraged that she was used in this way.  there is such difference between  someone who is terminally ill, has no chance of recovery, and someone who is disabled. this does not in my opinion make the case for death with dignity.  it was her  dignity at issue for her, however, was her inability to accept dignity in a different form the heart of the problem?

it is my deepest wish that Aimee is allowed to be weak without making headlines.  if asking for pain medication is a weakness at all.  meditation is a tool to be used and as corny as it sounds it is just one tool in the tool box.  her family is suffering as is this young woman. she made a decision out of youthful exuberance and is now paying a heavy price.  my heart goes out to her and if i could say anything to her it would be to embrace her tears as well as her joys.  sometimes bravery is crying and accepting the pain medication.

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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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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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keep making that to-do list

December 16, 2011 at 1:44 am (coping, gratitude, joy) (, , , )

4 a.m. is a great time to work on the to-do list.  by this time any hold out for sleep has passed, time to organize the cd’s or all those pesky plastic storage containers that disappear with the socks in the wash.  if that is too much then it is on to the list.  the mind boggles at the idea of some who seldom make such a list.  it has been my habit for many years and has served me well in general.  at the beginning of this journey one way to cope and put things in to perspective was to revert to the list.  to my joy this has turned in to a multiple list job.  vikto frankyl recommends we find the joy/purpose in our life and we will be able to face even the most devastating circumstances.  if it was good enough for this holocaust survivor it seemed good enough for me.  as the list has diminished some concern/thoughts turned to a quote stating that is when you know you are done with life. if there is nothing else you want to do (and I am hoping they mean the small things like waking up) then there is a void and death sneaks in to fill it. 

it may be purposeful indeed how some items on my list are still outstanding.  now after a conversation with my man it occurs to me how I can do something that will bring him joy in years to come.  he often says he is not of this era and feels he has been left behind by technology. it would seem geekdom in our family belongs to me.  as de-cluttering continues at a snail’s pace, it is apparent the old vhs tapes are not going to be donated and will not be enjoyed in the future unless they are converted to dvd’s.  this it seems has made me almost giddy, do you know how long it is going to take to complete this task?  I am not the kind of person who walks away from a job not finished and it is such a gift to add this to my dwindling list.

after christmas, sharing information regarding what a caregiver can expect from a terminal loved one is on the list.  fascinating that a m.d. would think himself qualified to write this. it is almost laughable, it begins pretty strong and quickly goes downhill.  this is not a person who has suffered personal loss.  projecting some months to the new project and then there are always holidays, birthdays and …. well the list does go on.  one more thing to be grateful for, think I will put it on my list:)

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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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