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!

 

 

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christina symanski, whitney houston, how to die in oregon, the comeback, and so much more

February 17, 2012 at 12:41 am (assisted suicide, choice, christina symanski, death with dignity, how does it feel to die, how to die in oregon, the comeback, Uncategorized) (, , , , , , , , , , , , )

let me just warn you that I am about to go on a rant, like non you have experienced here before. so you have been warned.  you know that I have very definite views on most issues so this will come as no surprise.  there are some constraints though and it is out of love for you,  there are some things I do not want you to question after I am gone. many times I have said ask me what you want now while I can answer and have those conversations if we need to.  in “the comeback” by shane hodge, shane takes the time to have these conversations with his mother and it left him in a good place.  it left him with pleasant memories and gave his mother the chance to share what we as parents hope to pass on to our children and loved ones.  some participate on a larger scale as in the documentary “How To Die in Oregon.”  this is my outlet for that desire to be understood.  most of my life it has been to my confusion and at times amusement for people to say who i am.  very sure of their interpretation people will say I am quiet while others think that is far from accurate, some think I am serious, others not so much.  I have been seen as someone who observes and analyses while others not knowing my profession find me the least judgemental person they have ever met.  does anyone ever truly know us?  do people simply make up their mind who we are and then make our behavior fit that mold as a detective decides someones guilt and then makes the evidence support that?  it is my observation people tend to want us to be who they think we are and do not want to be confused with the truth.  I can tell who I truly am and those that know me will say “oh no that is not true at all” as though they know me so much better than I know myself. 

here is a hint about who I am,  ah so here is the rub … see I was about to write about something that happened when I was young and would have made an excellent example of how I chose not to judge others.  it is  an incident that few know about and it is not something I would want my family to read here for the first time.  some know about it and hopefully they understand how it defined my life as a turning point and aided me in deciding how important my choice to look at things from all points of view has been.  it shocks me that I am struggling with my feelings now to understand how we have come to this horror story (Christie) and still choose not to have a responsible conversation about the right to die with dignity. this is where the rant begins, you have been warned, look away if you need to, it is about to get ugly.

let’s start with how we as a society feel it is our decision who dies and under what conditions.  who decides what is “life worth living?”  is it not our personal right? how about the constitution ???? life, liberty and the pursuit of happiness.  if my liberty is the liberty to end my life what are politicians doing trying to decide this for me?  and we are off!!! politicians!!!  mostly republicans and christians, these people are fine people, it is not my intent to label all republicans and christians.  please be sure to read this part over if you need to. NOT MY INTENT TO LABEL ALL REPUBLICANS AND CHRISTIANS!!!!  it is my intent to point out some theories that I personally find difficult to understand.  some people want to abolish the social programs that assist our poor, they also want to do away with birth control??? so have children you can’t afford but don’t ask for assistance? do I have that right?  say “get a job” really?  those “job makers” don’t seem to be making enough jobs and with the growing population that is going to be a bigger issue in years to come.  also our truly impoverished are children, that’s right, children. gingrich has the fix for that though, just put those poor kids to work! that’s right forget about child labor laws, go back a few years when children were sold in to what was essentially slavery. sweat shops anyone? guess that would give the break to those job makers that they need. no need to pay children living wages.  more women can die in childbirth so that would help with population control I guess, in the end it really is a win- win for the very rich.  however, they just scream gay marriage a few times and people don’t really hear what else is being said.  some say they want LESS GOVERNMENT, then they want the government to say who can get married, there is also the desire for the government to decide if a woman can have control over her own body or do we go back in time to men telling us what to do and say? will it stop there or will we be protected from big decisions like having the vote? owning property? what else is the government ready to decide for us?  oh yes they want to tell us whether or not our life is worth living.  silly me! why should I have the right to die with dignity??? there must be some reason that other’s need to make that choice for me. of course I may not be able to decide without being talked into it by well-meaning family members.  they are standing by the bedside ready for me to make my exit. it is only fair to them and so I must do as they want since I am weak-minded and do what others want me to do.  this is a decision I can not make on my own, and my family can’t be trusted, so gratefully the government is here to make that decision for me and every other human who thinks and wants to be in control of their body.  no I am not worthy of a dignified exit from this life.  the government wants me to suffer whatever indignity I must to satisfy those who don’t know me and don’t know what my life is like. 

the argument of people might end their life out of concern for their family or caregiver is beyond lame to me.  first I want to say so what if I choose to think of them? is it not the loving thing to do?  they suffer as well and as I have chosen to think of them and be concerned for their happiness in the past is it so surprising I might think of them now?  it is not a deciding factor, however, it is a piece of a very complicated puzzle.  people are crying over whitney houston and frankly I am confused and a little annoyed. this woman made the choice to use drugs, have children and then subject them to domestic violence and a home with an addict.  how is it more tragic for her to choose death, yes I know it is a disease and yes I think she made her choices.  life was too easy for her.  show up stoned and people feel sorry for you, if you are rich and a star.  if you are poor you are getting what you deserve.  we are cutting rehab programs for the poor so the message is:  if you are rich it is tragic, if you are poor too bad and no stars will be mourning your death. there will be no tributes on 60 minutes, oprah will not speak out about the loss to us all, you will just be one more junkie that the state had to bury.

Christine died months ago and yet we are just now seeing a story about her.  she was not rich, she was not a star, she was a girl who did a stupid thing and ended up a quadriplegic.  she is not the first and sorry to say she will not be the last.  she was a bright young woman who did not choose to continue living under her circumstances.  disability advocates say if we give someone like her the right to die with dignity( assisted suicide) it is a slippery slope and soon society will be rounding up all disabled persons and killing them.  this seems a bit far-fetched to me.  even if I agreed with having some guidelines as the person must be terminally ill there is then the argument that family will persuade the patient to take this drastic step. how that is seen to play out is not something I want to think about.  if physicians were allowed to assist it would add  another safety measure  to the process.  I do not see assisted suicide in my future as I would never put my family in that position, even if it were legal.  in “how to die in oregon” there was an experienced person to be the actual “assistant”, they stay with the patient a bit before and then give the patient the cocktail, they then let the family know they can join their loved one or not as they choose. it is quick and everyone knows what to expect.  goodbyes can be said.  the person is asked a few questions to make sure they understand what is about to happen and that it is still their choice.  this takes all the responsibility off the family. if certain members don’t want to be there it is their choice. if someone wants to spend those precious moments with the loved one they can.  christie was denied this option.  people who don’t know her decided if she wanted to end her suffering she must suffer to do so.  no dignity here, no quiet loving goodbyes and then a letting go and moving on with peace.  she had to suffer for nearly a month.  the only way for her to die was to refuse all medications, food and fluid.  can you even begin to imagine the last days, weeks of her life?  she was given no other option here,she could  live what she believed to be a tortured life or be tortured to death. a long and agonizing death and what did she do to deserve this????  since she was a quad she could not allow anyone to assist her by giving her the cocktail that would have released her from this suffering. no she would have put them in danger of being prosecuted, they would have been criminals for being merciful.  if we are not merciful then who are we?  we talk about gods mercy and wanting to live a godly life.  would that not include mercy for this suffering girl?? 

it breaks my heart and yet I know that I too may have to make some hard choices. do you think she wanted her family to suffer what they had to? they stood by her and nursed her while watching her slowly and painfully die in a most undignified manner.  that is what we are deciding not just for christie but all the christie’s, all the terminally ill who just want to leave with their dignity in tact.  for the families to of these people to suffer watching this unfold and not being able to ease the suffering of the loved one.  this is what some want to decide for all of us.  christie is not the first to endure this and she won’t be the last, there will be no headlines, no 60 minutes and no oprah mourning any of us.  we are not rich and famous.  we are just people who want to make this one last choice for ourselves.  as free and liberated members of a free society.

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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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New Year’s resolutions and hope

January 3, 2012 at 8:46 pm (hope, love, New Year's resolutions, Uncategorized) (, , )

after reading the post by the comeback I began thinking about what the whole New Year’s resolution tradition.  if I did not make any resolutions am I saying “oh well” and just accepting a mediocre life or worse?  this led to long talk with hubby and later with a younger friend.  my own advice as a therapist has been to make small goals along the way.  this gives a person the chance to experience success and learn to set realistic goals for themselves and only for them. too often people would say if only he/she would do x then my life would be better. the old “fix them” routine.  over the years my own resolutions have been decidedly on ways to improve myself as a human being, mother, daughter, sister, wife, therapist, teacher, soldier….. it has been my belief that using my energy on other’s inventory was a waste of said energy. 

long-term resolutions seem a bit more arrogant at this point in my life and yet they are still made.  tonight it came to me, looking across the table at the love of my life, I asked the question.  if you were making my resolution for me what would it be?   at one time my goal to make the world a better place took the form of law studies.  the first rule of cross-examination? never ask a question you don’t know the answer to.   would i dare ask this question, and leave myself open to an answer, when there had been no preparation for the answer?  yep indeed we went there.  after some thought, and most likely some trepidation on his part, his response to my surprise was – if I were making your resolution this year it would be for you to not be so hard on yourself.  this has given me great pause. 

those words “don’t be so hard on yourself” are words I have heard over the years.  it has never been my intention to be hard on myself, only to expect the best of me every day.  lately I will admit to feeling more dissatisfied with my performance as a wife and as a person in whole.  my physical heart is tired and needs rest if it is to last a bit longer. my heart of spirit needs to be reassured that I have given my all to any task for the day.  some days when texts of regret are sent, can’t make it again, it is a loss of a standard set for myself by myself.  it is also one of the events that we the ill are warned of. brochures on what is ahead include the perception from others that we want to be left alone.  that the healthy will not slow down for the ill.  it makes me think of basic training, the tallest are in the front and run at their pace.  the shortest, are at the rear and told to keep up or there will be consequences.  at 5’2″ my spot was ever in the last row.  knowing my determination the drill sgts added that i would be the road guard. this meant running ahead of everyone else, stopping traffic until the last runner was out of the road then catching up to them and getting back in place.

it has been with that same determination, that drive to keep up, that has made me who I am today.  although there are many things I could improve on, being a good human being is not I would say one of them.  this above all else has been my life long resolution.  if the lesson I need to learn now is not to be too hard on myself then I will embrace that although putting that into action, understanding how to picture that will take some work.  I hope not to disappoint Chris:) okay that was funny, a little anyway.

if I could encourage one resolution for us all it would be to live in love and all that brings with it.  this is not just love of others but for ourselves. forgiveness is a miracle that comes from loving ourselves enough to let go of anger.  if what you do today or everyday is from a place of love it is my belief peace in your heart and soul will follow.  there have been tragedies in my life as in many others, it has been a journey to arrive at this place and I like it here.  it will end when it ends, that is not my choice, for today and every day gifted to me, I will honor it be resolving , as I do daily, to appreciate this time, the people around me and hope ….

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To Resolve or Not to Resolve? and a few last words for 2011 from 2012

January 2, 2012 at 2:56 pm (choice, christina symanski, gratitude, hope, NLP, the bad cripple, the comeback, Uncategorized) (, , , , , , )

word association has been of interest to me for years longer than my psychology career.  how we go from one thought to another or retrieve unused but stored information in our brain fascinates me.  even before my teaching years NLP ( neuro-linguistic programming) made perfect sense to me.  over the past few years there have been many studies of how we store and learn information.  while teaching, this gave me a way of helping students who were struggling, if it is understood how this individual learns and is taught in that form, there is a better chance of success.  this is all relevant now as I am trying to decide what thoughts to lead with and how to keep them all in some relatable form.

 the death of Christina Symanski has been a bit of gossamer that can’t be cleared away.  the only way for me to move forward,  is to put it in perspective.    perspective is a word often used by those who don’t actually have the ability to use it.  when speaking to someone who has gone through a life changing event the best thing is often to put this event in to perspective.  recently a man was sharing with me that his mother had announced to him she had been molested as a child.  he was quite  off put by this and in his words “shut her down.”  my advice was solicited and given.  it would have been more productive if this woman could have sat with an old friend or therapist to discuss this event.  if she still felt the need to share this with her son then she could do so from a position of perspective.  he felt she had just dumped this on him.  this goes back to how much do we share and with who?  just want to add that in my opinion the recent news of boys being molested in her home town (Pennsylvania) was a contributing factor in her anxiety.  having the chance to put this event in to perspective at the time would have aided her over the years.  it still goes back to my question of what is the motive for telling someone about such an event?  if it is just to make you feel better, stop and think this through.  what do we want the outcome to be?  more than one cheating spouse has said they had to tell the other as they deserved the truth.  this has seemed a bit cowardly to me.  some burdens must be carried by us alone, in my opinion.

there has been very little information regarding the passing of Christina.  do we really need to know more?  it is a tragedy her family and loved ones will have to find their way through.  it is doubtful she could have lived for a month without food and water.  food yes, water no way.  does it matter if in her blog, looking back, that there were hints she might end her life?  these were her decisions and no one else can tell us if our life is worth living.  no one can give you a reason to be hopeful if you can not find one in yourself.  this is a tragedy that is played out daily around the world yet we have given much time and thought to this one individual.  is it due to her perceived good life? she was an artist and very active in the spinal cord injury community.  does examining her life reassure us we would not do the same thing?  we see a person who has been taken advantage of and say it wouldn’t happen to us since we are smarter and wouldn’t put ourselves in that position.  the old “those people vs. us” theory?

in my search for others going through similar circumstances it has been my good fortune to find much more than that.  it has been an inspiration to read of how others are caring for their loved ones with either terminal or life-long illness/disabilities.  still others have the disability and are living their life to the fullest in their own way.  so 2011 has come and gone.  it was a good year and it leaves me hopeful for the next year to come.  being hopeful is as important to me now as it has been throughout my life.  that optimism has sustained me over the years and I trust that it will continue to do so.  our hopes  adjust to the situation.  knowing my time is running out means I won’t be hoping for that promotion ( no longer working) or the big trip (no longer taking trips over a few hours and no flying at all).  hope still lives here though, it is in the hope of being remembered, of leaving a legacy that will be passed on.  the hope of still having some good days, being a good friend and companion to others, these are my hopes now.  do I still make New Year’s resolutions?  yes I do.

so now we come to the point of this post, making resolutions or not.  this is a personal choice and yet I read with interest the blog hosted by Shane Hodge, the comeback.  his post was regarding making these resolutions and what it says about us if we don’t.  this man is on fire and has much to share with the rest of us.  shane wrote a book by the same title and I am in the process of reading it.  briefly what he shares is how he came to his own  comeback.  through conversations with his dying mother certain truths became more evident to him.  his mother was able to leave this legacy due to his ability to hear what she was saying.  this is my own hope to leave a legacy with loved ones that will be remembered.  to know that your philosophy on life is being honored can be our greatest accomplishment.  

 after reading an article about resolutions shane wrote about his feelings and what this said to him.  the poll said that more people are not making New Year’s resolutions, the reason given is they felt nothing could change for the better.  they were expecting more pain and bad news for the coming year.  the following is from the comeback site.  “I’m going to sit down and write a nice long list of all the stuff that I no longer want in my life next year. I’m going to write a list of all the things I want to achieve next year, I’m going to create and commit to a bunch of New Years resolutions. Why am I going to do that? I will do it as I refuse to let “Oh Well” control my life and I can make sure that happens because?      I believe in Miracles.” (from Shane Hodge w/permission)

this led to my own poll of who is making resolutions and why/why not?  for now I am going to go rest and come back later.  this is unusual for me to post more than once in a  day but I have much on my mind now and this helps.  the other reason is one of my cats, chloe, is making it very difficult to ignore her.  posting a pic which is also new for me. 

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