no words of wisdom here either

November 30, 2012 at 12:10 am (bravery, death with dignity, dying, how does it feel to die, living with dying, the comeback, the dr. says, words of wisdom) (, , , , , )

today i had the opportunity to read a blog written by the brother of the comeback.  i was not surprised to see that craig is as talented as his brother shane.  what did jump out at me was his declaration that he had no words of wisdom.  some of us do feel as though the healthy community looks at us to have answers to questions we all have, in addition many of us feel as though we have to be strong for others. it is up to us to make sure that the healthy friends and family are not made to feel guilty when they are not being the kind support we need.  we are taxed with supporting them through their angst over our imminent death.

this is not like most of my blogs and i am not sure why.  reading craig’s blog made me start thinking about the reversal of support.  should someone make the sacrifice of coming by to see us? they have things to do and places to be don’t they?  our healthy friends and family can’t be expected to actually go through that uncomfortable visit when they could be doing something fun should they?  i know that we the dying make the choice to smile and be supportive or acknowledge just how selfish we can be.

no we are not selfish and neither are the ones who love us.  another friend wrote about the burden of love, the weight of it.  there are times when i wonder how my love stops himself from walking out the door and never looking back.  i do love him so it comes easy to support his need to be away from time to time.  actually he would, he says, be fine with staying here with me just in case.

tuesday i was experiencing so much pain that i went to the dr.  my dr says this would be a good time to go in the hospital. he felt this was an appropriate action.  he also knows me and said, after seeing the look on my face, we could do all the tests that day and get the results in a day or two. if i were in the hospital he felt things would move faster.  in the end we decided to go outpatient.  wednesday i was feeling a little better so we went out.  sitting across from each other, chris shares he is concerned we are not being prudent to go on a cruise.  after a moment of thought i responded…. i am going to die somewhere so why not on a cruise?  the blank look on his face is not a new one with me.  he says ok. guess i will figure it out if it happens.  my point is i don’t want to sit at home waiting for death to come.

turns out i probably passed a kidney stone and my liver is getting worse.  the good news is we are leaving next sunday for a 7 day cruise.  i will not have to be strong and wise. he will not have to be strong and wise.  we can be two sweethearts sharing an unforgettable experience.  i am feeling wiser already!

 

 

Permalink 9 Comments

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.

 

Permalink 2 Comments

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.

Permalink 5 Comments

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…….

Permalink 7 Comments

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.

Permalink 3 Comments

%d bloggers like this: