i’m a believer

October 13, 2012 at 1:32 am (believe, choice, end stage congestive heart failure, hope, how does it feel to die, living with dying, pain, the dr. says, Uncategorized) (, , , )

today we had lunch with friends.  we haven’t seen each other in a couple of months although twice arrangements were made. each time we had to cancel due to  my health.  there are few people who hang in over the long haul, whether friends or family.  marge is about my husband’s age and her husband is a few years older than both of them.  age is not our only difference, they are republicans-we are not, they are church goers-we are not.  yet we find plenty to laugh and talk about.  part of the laughing may be the alcohol consumed when we go to their home.  our usual pattern is lunch, then on to their home.  we usually eat near their home since we have some concerns about their driving.  at first i was not sure if they drank but they had alcohol at their christmas gathering so i carefully brought up the subject. not wanting to look like a total alcy i told them about a drink my sister made for me years ago and how great it was.  marge almost jumped for joy! they were not sure if we drank so didn’t want to bring it up.

the drink my sister made is called “keoke” coffee. it is brandy, creme de cocoa, kahlua and strong coffee with whipped cream on top.  wow it is so delicious!! that very day we stopped at the store on the way from our lunch to their home. now marge keeps the works on hand.  she loves to bake and had made pumpkin pie from scratch.  the conversation rambled from one area to another and they had endured a scare regarding her heart health.  they know that i have a medical background so all the questions their dr. should have answered was answered over keoke coffee.  at some point her older sister came up in the conversation.  her sister, who is about her husbands age, has made plans to visit them next year.  marge said she thought this was optimistic at her age.

taking a moment and choosing my words with care i responded.  i have to believe, i have to make plans and hope to see them come to fruition.  maybe that is how your sister feels.  if she doesn’t make plans ahead of time what will she look forward to? if she can’t follow through for some reason she might be able to get a refund if she has paid a deposit or maybe she hasn’t paid a deposit it is just the fun of planning a trip to see her sister.  it gives you both something to share and talk about.  there are so many things i can no longer do, i choose to continue planning for trips in the future or holidays with family and friends.

a few days ago chris asked me if i wanted to go to the biltmore for new years eve. we went there a few years ago and had a really good time.  he went right on to plans for valentine day.  my throat tightens and the words are stuck right there.   let’s just get through the holiday season and then decide what we want to do, how’s that?  he agrees and yet it is in his eyes, why not make plans?  since i seem to no longer have really good days, as just a few months ago, it takes more consideration to make a commitment for any kind of travel.  new years eve at the biltmore is quite expensive and i don’t want to be stuck paying for a weekend that we can’t enjoy.  besides our little celebration at home is more to our taste.

i am going to admit and share something now.  sometimes my writing takes a path i was not expecting. that has happened tonight.  chris is going to augusta tomorrow, he will be gone until sunday mid-day.  i am so happy he is going and want him to know that i support and encourage his participation in taking pictures which he loves. of course being with our grandchildren will be great.  for weeks i have told him not to worry, it is only one night away so just go and have fun.  tonight sitting next to him i am still encouraging him and just when he is feeling comfortable, the pain and fever come.  if i go to bed will he notice i have fever? at times he is hyper-vigilant, other times he is go with the flow.  at one point the pain became excruciating and i let out a little cry, quickly covering by saying, “never mind, i thought i saw something but i was wrong.” ok that worked, it is good he leaves early so he won’t think of changing his mind.  this will pass….. or it won’t. either way he is going to have a good time and i will hope for the best.  i am a believer in making the most of every moment and making sure my love is as happy as he can be under the circumstances.  we are believers.

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ebbing tide

October 10, 2012 at 11:12 pm (choice, death with dignity, dying, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, moving forward, shackelford ponies, the dr. says) (, , , , , , , )

for a few weeks now it has been more and more obvious that this adventure is progressing.  there are some things that people can sympathize with but not having experienced them that is as far as it goes.  the constant pain is one of those things, the exhaustion is another.  when with other people i can easily be left behind.  it is so annoying that i move at a crawl, if i try to go faster i start coughing and have trouble breathing.  going faster is just not an option.  other people don’t think  about slowing down until they realize i am not there beside them. that happened today, he is taller and a great walker.  he can walk as fast as most people jog.  there we were with him almost out the restaurant door while i was still not quite in the lobby.  those moments are perfect pictures of what is happening.

as others continue to move ahead and therefore away, the days ahead are illustrated.  some days while sitting in the recliner, though my love is at my side, i am aware of feeling the life going out like the tide.  it is a gentle ebb and flow, it is the life light flowing from my being.  the tide has been a slow one but make no mistake the tide is going out.  we are going to the seashore in a couple of weeks.  my hopes are high for this trip.  my love of the ocean pulls me and it is a blessing to be able to go.  my energy level is almost non-existent yet my will is strong and i am counting on this will to get me there and to afford me the joy i believe awaits.

in the past i have been able to see myself at the next event or holiday. now things are a bit foggier.  the time to make some choices is closer.  of this i am sure and feel no doubt.  i will not let my husband suffer more than i feel i can bear.  my family is my greatest love and i have a great life.  when the time comes  to go i will pack lightly and will not worry about security checks not allowing more than 3 oz of fluid!

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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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insert multiple curse words here

August 21, 2012 at 11:25 pm (angina, being remembered, choice, dying, gratitude, how does it feel to die, symptoms of angina for women) (, , , , , , )

we went to a movie today.  through most of the movie i had angina pain.  so here goes the whining, you have been warned.

angina pain is like a combination of the  worst pain just above your shoulder-blade in your back (for women). if you have had a toothache, strep throat, broken bones or migraine headaches you have some idea of what this is like.  it can last 5 min or an hour. it can stop hurting then 5 min later hurt again.  then the nausea comes and i am trying to decide do i call 911 or do i sit here and see what happens?  obviously i opted for waiting to see what happens.  afterward we went to dinner at a local cafe and started talking about life in general.  pretty soon he mentions that his fear is my dying before him and i laugh since my fear is not going before him or having a stroke.  as hard as i think he will have it, i will have it far worse.  so it is not even something i am willing to contemplate. he brings up the age difference and i remind him of how healthy he is and that his aunt is 103!

the angina just reminds me that this thing is happening. it is really happening and he needs to understand that wishing it away is not going to change anything.

my greatest fear is not dying but having a stroke that takes away my ability to make my own choice.  i am in no hurry to die and yet when i think about it even in the darkest hours there is no fear.  i am grateful and feel lucky to be at this place in my life.  at the end of each day i can honestly look into my heart and say if i died tonight i would be happy.  there have been years in the past where i felt unfinished and would have left with a heavy heart.  my love has given me a well lived life.  my love for you has brought me to this place.  just remember as long as i am in your heart i am not really gone.

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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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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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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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Decisions to make when dying

January 16, 2012 at 8:05 pm (choice, death, dying, end stage, hope, how does it feel to die, moving forward) (, , , , , , , )

decisions to make when you are dying are somewhat different from the ones being made every day by healthier people.  some are exactly the same of course, what to eat, where to go, what to read ….  our lives are made of all our decisions great and small whether they were the best or not.  in general it is my pleasure to say decisions made by me have been the best to my ability at the time.  putting decisions in perspective is a gift we can give to our selves and others.  it is not your mother’s fault if you made a poor decision at 30.  too often people fall back on how it was in the day.  who screwed them up and how it is not their fault as the teacher in 3rd grade broke their spirit.  not that our past does not have a huge impact on who we become, that is a valid point to be made.  however, it is in our own best interest to say that was then and this is now.  no one is making my day-to-day decisions for me unless given the power to do so. 

we have the ability to choose peace of mind and heart.  my heart is at peace by choice.  recently I have read a lot about how someone dying is supposed to be feeling. of course these are not written by someone actually dying.  there are some common physical symptoms as we reach closer to the bear (death).  food is not as important since the body is shutting down and we are not as active.  other physiological changes are beyond our choice.  the level of energy experienced is diminished naturally, a lot of focus goes into just breathing.  for the last few months I feel myself going through some changes physically, they are markers of the disease and quite expected.  when you enter end stage it is crossing a threshold(doorway) that you will not be leaving.  it is not a bad place to be and if you are psychologically ready it can be recognized for what it is and even appreciated.  knowing where you are going is somehow comforting.  at this point I know where I am in my progress.  what comes now is the mystery.  so I am going to keep writing as long as I can.  this is part of my legacy to others.  this is how it felt for me to die. 

so far, even with the fatigue, my life is better than I could have ever imagined 20 yrs ago.  in May it will be 20 yrs since I first laid eyes on the man who would become my best friend, my love and my husband.  as a more practical person the whole idea of love at first sight seemed romantic fantasy.  today I would tell you it happens.  the thought that was mine at that moment was, if I can spend even one day with that man my life will be better.  there is no reason why I would think that except for love at first sight. 

for the past few days I have been working on a project to make a difference for him later.  it is another decision that to some is insignificant and maybe it really is.  there are still things of mine that can be let go to make sure his things are all around him.  he is comforted by his things.  one of the reasons I love him is his love of books and we have more than most would think reasonable but this is our home and our choice.  the room we use as an office has both of our desks and our guest room has been crowded with books on the floor.  my decision has been to move my desk out of here, give him a large bookcase that has been for my use and in general try to arrange things so when I am not here he can come in here and feel comfortable.  knowing how he is my stuff would be still sitting here yrs after I am gone. yesterday he did make the remark he did not understand why I would want to give my desk away when I use it.  as I gave one reason or excuse after another, seeing he wasn’t convinced, I stated it directly.  my desk is just a desk, yours is a special piece passed down by your mother, it makes no sense to get rid of yours.  he of course made the offer to do something with his so I had to be frank and get him to admit when I am gone he is going to want his desk in there and not mine.  it makes sense to take care of this now.  one thing I know about him is when the time comes he may be paralyzed to the point of not being able to get rid of my things and I love that he would want to keep reminders. my concern is he won’t be able to let anything go and it will be too much for him.  he has shared with me his fear of not being able to go on without me.  many long talks later we both know that he is going to need time but he will go on without me.  he knows we both want him to continue to have a social life and to be the best father and grandfather he can be.

other decisions are going to be made over the next few weeks.  it has been 4 yrs of my 5 yrs to live.  all I can say is it has gone by quickly and been so great!  I am not giving up at all, that spark of hope lives on.  the hope is just changing. now my hope is to go peacefully in my sleep, my hope is  to make the event as easy on my loved ones as possible. my hope to live on in the memories of those I love.  so much hope and so much to be grateful for!!  tomorrow a friend will come to help move the desk, it is going to another friend and that makes me happy.  I hope she will like it as much as I have.  I hope she thinks of me and is inspired. 

it has been 4 good yrs and may be more to come, who knows for sure?  I will try to make the coming decisions to the best of my ability.

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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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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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