a different kind of night

October 26, 2012 at 3:03 am (dying, holidays, how does it feel to die, leaving, living, living with dying, peace of heart, shackelford ponies, the dr. says, waiting) (, , , , , , , )

tonight is very different from just a few nights ago.  my sister is stretched out on the couch and is leaving tomorrow.  yesterday we went to see Argo with ben affleck and it was gripping.   as we walked up to the counter to pay she turned to us and said “i can pay for myself.”  of course she can, she has a great job, travels, lives in san francisco on her own.  she has a ton of friends and an on-off boyfriend.  i don’t have any reason to worry about her, well …. except she is my baby sister and  lives on her own in san francisco!

 this evening we spent together took me from the moment, to the past and the future.  in that moment i realized she is going to be fine.  a few years ago she came to stay with us, at the time she was going through an awful lot of emotional turmoil.  we were sort of a resting place, a place for her to make some decisions about what she wanted to do without the stress.  since i was 14 when she was born and the mother  really turned her over to me, i have a very protective love for her.  hearing her say she could pay for herself brought me back to the moment and i was so proud of her. 

the down side is it feels like letting go of that baby girl i first held, the girl who called me in germany to tell me about the boys she liked, the time she had a fight with her boyfriend and through her tears came to my lap to sit and cry.  the upside is i can go and know that she will be okay.

knowing that everyone is going to be okay is important.  my sister has said and it is so true, we are good, we have said  everything we need to say.  our calls end with i love you so when i go there is no doubt that we have a good relationship.  my husband will be sad but he is going to be okay.  my step-friends will be sad and they will stand by their dad and help him if they need to.  my friends know that i care about them and that if something needed to be said i would have said it.

so now, more than ever, we are just waiting.  while i am waiting i think i will go to the ocean and see the wild ponies. then we will have a big family thanksgiving, after that a cruise to the islands, and round out the year with the traditional Christmas in charleston!  this very well may be my last one and if it is i am going out with a bang:)  life is good, yeah life is real good!

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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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it’s really about living

May 17, 2012 at 2:17 am (being remembered, dying, how does it feel to die, living) (, , , , , )

yesterday we went to a little restaurant in town and we know a couple of the servers pretty well.  one is a lovely young woman who recently graduated with her BA.  she wants to be a writer or at least that seems to be her goal at present.  after being through a particularly difficult period we had gone to the grill for dinner and the conversation went to  why we had not been in for such a long period.  for people we have a long-term acquaintance with it seems fair to mention that one day he may be on his own.  for me it is another attempt to protect him in future.  if people know, then he will not have to explain what has happened. it will be enough that i am just not with him.

she is working as a ghost writer for a couple of online companies.  the hope is to someday write her book and we believe she will.  there has been mention of this blog and the content.  after speaking with her last night I realized that if asked my brief reply is, it is about dying.  on the way home i wondered why i referred to it  in that context.  yes, in my mind it was going to be about what it feels like to be dying.  my hope was to let some light shine on the subject.  having cared for countless terminal patients, during my nursing years, many expressed regret at not talking to their family more about what they were feeling.  this is an opportunity to share after i am gone.  in reading this he will be re-assured that i adore him.  anytime he wants he can read these entries and know that i felt blessed to have such a gracious loving man.

even as my thoughts are forming, an outline of activity or inspiration for a new post, the act of living distracts me.  there is more about life here than death and that is maybe the key for me.  this is more about continuing to live the life i can be most proud of and to ease the road of life for my loved ones when they are on the road without me.

from White Elk:

when you were born, you cried and the world rejoiced

live your  life so that when you die the world cries and you rejoice

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Dr. Phil and euthanizing disabled adult children, this is why people fear euthanasia!

April 18, 2012 at 12:23 am (dr. oz, dr. phil, dying, euthanasia, how does it feel to die, living, living will, Terri Schiavo, the bad cripple) (, , , , , , , )

while we were gone the dvr was running.  on these long nights where sleep is more than elusive and even with 400 channels there is nothing to watch!  just before chris goes to the dentist i turn on the recording of dr. phil.  this was not your every day dr. phil.  for once he did not give any advice.  the only commitment he made was to say he would not want to live the way this mother’s adult children were living.  both of this woman’s children suffer from a debilitating disease.  it all began when they were very young, it gradually took them away from what most of us would consider a life worth living.  this is a question each person must ask and answer for themselves, what does it mean to be living?  video was shown of her adult son and daughter. both have feeding tubes and can not eat even puree food.  the bags are hung and over several hours each receives all the nutrition needed to sustain life.  the son has not eaten in 17 yrs and the daughter has not eaten in 5.  the mother asserts that they do not have any pleasure and may not even have pain.

the mother does not go to visit her children regularly as it is so upsetting to her.  this is understandable and until someone walks in her shoes please don’t judge her.  she was accompanied by her attorney, he was dr. kevorkian’s lawyer.  obviously he is an euthanasia advocate.  the problem here as i see it, she let the feeding tube be inserted when she had the option to withhold feeding for them.  now she wants to give them a lethal injection to end their life.  many would say she should have then and could now remove the feeding tube.  she doesn’t want to see them suffer any more. it may also be a factor that she is getting older.  does she worry who will care about them when she is gone?  they are blind, maybe deaf and have little brain activity if any.  one woman in the audience just kept saying “these are your children.”  well she knows that.

since most states consider ending your life with dignity illegal ,the only way to legally end their life is to withdraw the feeding tube. a slow torturous death at best.  to ask her to watch her children die this way seems cruel and unnecessary.  the same argument was made on the dr. oz show.  many disabled individuals see this as a slippery slope and after watching this show I have a new understanding of what mr. peace tried to share with me.  since the feeding tube was inserted at the time and there was full knowledge of what lay ahead for these loved ones it seems to have reached a point of no return.  this is not like teri schiavo since she had made it known to others what she wanted and her husband just carried that request to its end.  as children they could not say we do not want to live this way.  they depend on the kindness of loved ones and indeed strangers.  the law allows her to remove the feeding tube and yet not make the end easy and loving.

the question for me is if for some reason my own family was faced with the decision to take steps to keep me alive would they be able to say no?  even dr. phil made the observation he would not want to live under the conditions that these two people are.  why aren’t we having more discussion about this?  how do you have this discussion with those you love?  is there a segue to, do you think I have the right to end my life with dignity?  it is not an easy conversation and yet one that could make things easier.

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The twilight zone-another reality

October 12, 2011 at 6:51 am (end stage, end stage congestive heart failure, holidays, living, medical terminology, Uncategorized) (, , )

Last week I had another dr. appt. Afterward I felt as though I live in two worlds. One is my everyday life and the other is my medical life. While  with the dr.  we discussed the fact that I have been in “end stage” congestive heart failure since last November. Once my liver became what is called “congested” I officially entered the final stage. It is interesting to use that term since there is nothing after this phase. I don’t feel like it’s the end. I am not sure what it is the end of. It is not the end of hope, it is not the end of joy nor is it the end of my love. A friend of mine asked me if I am afraid to not be here anymore. This is a great question and I was glad she felt comfortable asking. I would rather people ask their questions now while I can speak for myself, instead of  wondering after I am gone.

The answer is no I am not afraid. My focus has been on the here and now. When I am gone? Well, I will be gone. My hope is I have made a difference. By doing so I will live on. Everyday we are given the opportunity to make a difference, to uplift another, to stand for something and empower others to do the same. You never know how an act of kindness may make a real difference. If not in others, then in yourself. Yes I believe we can make ourselves happier and healthier by giving of our self, no matter how small the gesture. This includes giving compassion to ourself. Sometimes this is difficult, if I have to cancel plans or don’t feel well enough to make dinner I can be very critical of myself. Luckily I have family and friends who are loving and understanding.

Last week I was at the dr’s office and I told him I have stopped reading about the next step and signs of progression. There is no point since we (the dr and I) know what the next step is. I have to go in next week for lab work, at this point it is just wait and watch for other signs of organ failure. I realized there was this awkward pause and this is the part that is a bit surreal. We had been talking about this “end stage” process from a clinical view and that is the surreal world. My real world starts the minute I leave his office. It’s back to traffic, running errands and just living my life.

As Chris and I plan for the holidays ahead I am in my real world, that is on occasion disrupted by that other world where I am …… I am not sure what to say here. I recently read that people with a serious medical condition need to accept they are sick and I do. I just don’t like to label myself that way. I am many things and ill is just one of them. For the few minutes I am in the dr’s  office I am in that twilight zone of illness, I am grateful I do not live in that world.

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Oprah says “what I know for sure”

September 17, 2011 at 10:18 am (friends, gratitude, hope, living, love) (, , , )

each month at the end of Oprah magazine there is an article entitled “what I know for sure.” I don’t get the mag each month but on occasion I do and always read this last article. it fascinates me that anyone feels they are sure about so many things in life. even now when I would hope for some sudden wave of wisdom to wash over me and give me clarity, I can not say I am any more sure of things than I was before. I have noticed however that even Oprah sometimes contradicts what she has stated earlier to be something she knows for sure. so my guess is we all may think at different times of our life that we know something, then some new experience changes our view.

my relationship with my mother, like so many other’s, is complicated. she has some issues with her heart, she had to have bypass surgery, and a few weeks ago she became quite ill. my sister Mandy called me and said she was taken by ambulance and did not think she was going to make it out. much to my surprise I was upset. if you had asked me before this call if I would feel bad I would have said no. not that I don’t care just that we aren’t that close. much to my surprise I went from being very practical about the steps that would need to be taken to tears. my poor husband didn’t know what to think but he was his usual supportive loving self. I should say he was supportive until I went into unrealistic expectations of myself. my middle sister lives the closest and has not been the most dependable person in our family. she also has a love- hate relationship with our mother. so I started thinking I would have to go to california and take care of things. my mother had also requested that my husband come to settle everything in the event of her death. there was no way I wanted him to take that on and I am not supposed to fly or travel far from home. so here is the shocker and changed what I thought I knew for sure. Mandy went to the hospital every day, she called me with information and updates. she also said she knew that mom wanted Chris or me to take care of things and she would be happy to help in any way she could. I had to take a moment and really grasp how different she was from what I thought based on prior experience. my youngest sister tends to be much more practical and cuts through the bull in a way Mandy never did. here she was though being so much more than I realized she could be. I love my sister but I now have some respect for her. I know when the time comes if I am still here I don’t have to worry. not about this anyway, my sisters are going to handle whatever comes and they don’t need me to do it for them.

something I do know for sure? well that would be that every day and night I feel blessed to have the life I have and can’t complain about it not being as long as I would like. the love of family and friends is a powerful thing to have in your life no matter what you are facing. each email, text, phone call and visit means so much to me. yesterday was my husbands birthday and he received calls from family and friends from all over, we had a small celebration and my step-friend heather, along with some close friends came over for a few hours to celebrate with us. while here one friend’s, one year old daughter took her first steps! what a miracle that was. to be allowed to be a part of that moment was such joy. seeing heather always makes me feel better and thinking about the coming months when we will see other family, our Charleston family, gives me great hope. dr. s did say he thought I would make it through the holidays and that was good news. not to be ungrateful but I think the holidays go through the middle of february at least.

whatever time I have I do know this for sure, I am grateful and just want to live each day to the fullest. to my friend Michelle, I hope you know for sure how much I care and respect you. to my family and friends who have become like family I hope you know how much I love and care about you. please know this for sure I am always with you no matter what!

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How do you cope with the uncertainty?

June 10, 2011 at 11:25 am (choice, coping, dying, family, feelings and thoughts, friends, gratitude, living)

this is a question one blogger is asking people to answer. she has a chronic illness which has its similarities to (in my opinion) terminal illness that extends past a few months or years. one reason I find this to be interesting;  isn’t life in general uncertain? the writer points out how random good days are and how hard it is to plan from day-to-day. working er/trauma and forensic psychology sort of teach you not to expect anything for certain on any given day. beyond that we all have little things that crop up and change our plans, somehow we adjust.  really I don’t know anyone who is certain about much. have children? well you never know what is going to happen today, make your plans but plan on making alternate plans. every day we experience little things that were not in our plan.

so life is uncertain and death is uncertain. yes I could go to sleep and not wake up but that could happen to someone who thought they were healthy. it is tragic when we hear of a young athlete dropping dead after a game due to an aneurism that no one knew about. the very thing that shakes us is how uncertain life is. if a young healthy person can die suddenly then we are more aware of our own mortality. I have embraced the great mystery of life and know that nothing is promised to any of us. even if you do everything “right” it can turn out all wrong, at least what we think is wrong.

many times I have asked myself would I rather not know my time is short here? there is no right answer to that for me. the fact is I do know and can use that information to do things the way I want. making arrangements ahead of time and easing the way for my family and friends is one benefit of knowing. having this knowledge allows me to treasure each moment and make a conscious choice to create as many memories for myself and loved ones as possible. sometimes I use these thoughts to make my way to the next moment. each laugh shared, each tear, they are all here in my heart and when my body is weak my mind uses this time to remember and plan for the next moment when I can check my email, text, or listen while others talk. I go ahead and plan, just like you do, and just like you those plans may have to change.

Life without uncertainty wouldn’t be real life, I want real life as long as possible. family is coming to visit tomorrow and I am excited, we have plans. those plans may change to accommodate my health. those plans probably will change but I will cope and so will they. next week my sister is coming to visit all the way from san francisco, she knows we will have to plan as the moment arrives. friends know I want to get together and make plans to but realistically they may not happen. so we make new plans. as hard as it can be for me I know that my uncertainty will end and the coping of my loved ones will begin. we will all know for certain that have coped with the situation dealt to us in the best way we could. we know for certain that we love each other. we know that we are fortunate to have this time. we know that life is uncertain and we do more than just cope, we live, we laugh, and we love.

so how do I cope? the same as anyone else alive, by living each moment, and appreciating it.

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nothing new in the truth

June 8, 2011 at 11:28 am (choice, family, feelings and thoughts, friends, gratitude, hope, joy, living, love)

The following is from an email I received in one of those forwards so many of us delete without reading. Since this came from a reliable source (thank you Susanne) I read it. I have seen it before and it just validates for me the way I choose to look at life, and the changes that are happening. The first time I saw this I smiled and thought what a great attitude and I hope I can live this way when things are not going so well. It is easy when you are young and the world is just so bright and old age seems light years away. of course old age is not the only thing that can happen to turn your world upside down. find out you are not going to make it to old age and see if you start assessing life a little differently.

Happiness is something you decide on ahead of time. Whether I like my room or not doesn’t depend on how the furniture is arranged … it’s how I arrange my mind. I already decided to love it. ‘It’s a decision I make every morning when I wake up. I have a choice; I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do.
Each day is a gift, and as long as my eyes open, I’ll focus on the new day and all the happy memories I’ve stored away.. Just for this time in my life.
Old age is like a bank account. You withdraw from what you’ve put in. So, my advice to you would be to deposit a lot of happiness in the bank account of memories!

for me it is a checklist, literally: first did I wake up, okay that’s a good sign. eyes open, better. feet on floor, very good. husband, check. cats, check. take a shower without throwing up or coughing uncontrollably, doesn’t matter, I am up and on my feet. everything else is just by grace and I appreciate it. even tonight when pain is trying to crowd out every thought and feeling. yes even now I am grateful, I am feeling which means I am still here. my mind is as good as it has ever been, not sure what that says about me:) the absolute wonder of it all is the memories I have cannot be touched by even this pain. our Charleston family is visiting this weekend and I am going to rest up so we can make as many memories as possible. each time I am with them or even talk on the phone I am for that time not in pain. oh pain is there and trying to be heard, to push out the joy but I choose not to let it. who knows if that will work in the future. if it doesn’t I will find a way to adjust. I have already made up my mind. this disease will not decide how I love and will not tell me to stop making memories. it has been my privilege to be a part of many happy hours, days and weeks with those I love. as I sit here I can remember the first time my sister, who is 14 yrs younger than me, smiled at me and twisted my heart around her little finger. there are too many to write about here but I have been graced with much joy and love in life.

joy is an important part of our life and we can choose to have it. are you happy? make your list and be aware of what makes you smile inside and out. don’t let the days pass without that smile, it is your choice.

to clarify my last post I want to say it came across a bit whiny and that was not my intention. I worry about the people I love and know this is a bit of a rollercoaster. some days the news could be better and then it will be better. I worry about the toll it takes on others joy. recently a friend confided she felt she shouldn’t complain, she said compared to my problems hers were nothing. this is the kind of issue I want to avoid. my husband has said the same thing, and I understand what they are saying. however, to me it implies I am unable to have compassion for others and it is all about me. the truth is I want to be as supportive to them as they are to me. let’s not compare scar’s. another persons pain is as real as mine and I hope as long as I have a breath I will want to comfort others and be supportive of them. love doesn’t stop, not now and I hope not in my lifetime.

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waiting and wondering

June 1, 2011 at 10:35 pm (living, moving forward, waiting)

this morning I have been thinking about how much of our time is spent waiting for something or someone. in the army we lived by the phrase “hurry up and wait.” it was the norm to get up at pre-dawn hours just to wait for the word to come down through the ranks to move ahead. most of us understood this was what to expect and we would be prepared to wait. watching how some people dealt with this was one of the more interesting pass-times during our wait. now it is at the drs. office, after rushing to be 15 minutes early as directed, we sit and wait. some things never change! most people just read, watch t.v. or talk, but there are those who like my army days are not prepared for this wait. you can hear them complain a little too loudly or watch them go to the receptionist repeatedly wanting to know where they are on the list, as though they were waiting for a table at a restaurant.

this morning I am waiting to feel better. I can remember, barely, the days where I was ready to face the day and looked forward to whatever challenges lay ahead. now I wake up, wait for the nausea to pass and possible pain, then convince myself it is a good idea. I make my way to the recliner in our living room and sit and wait to catch my breath. I wait to feel together enough to have a conversation with my husband. we wait to see if I will be able to participate in any activity or will I be going back to lie down. after showering I wait again to get the strength to do whatever is next. I really don’t mind any of this since I know I might have a good 4 hrs coming my way. that is what makes it all worth the effort.

after my appt last friday I am now waiting for the ct scan this friday, then I will wait for my dr. to get the results and find out what is next. another way to look at this is I am looking forward to hearing some good news. as I wait and look forward to those few hours each day it is somehow different from just waiting for someone else to give the okay to move forward. I make that decision, it is up to me when I move forward and as soon as possible I do just that. moving ahead, getting on with my mission is more freedom than if I am waiting for someone or something else to let me move.

in the documentary I wrote about last time one woman talked about waiting to die. too many people are waiting to live, waiting for some reward in after life, I want to live now and wish others that they too could stop waiting and start looking forward to whatever brings meaning to their life. one way I cope with the waiting is to plan things to look forward to. they don’t have to be big things at all, even something here at home can be gratifying. this week I am looking forward to lunch with girlfriends, next week a visit from family in Charleston and the week after that my sister will be visiting for a week. I look forward to hearing the results of my scan, whether it is good news or not it will be more information and let us know what we have to look forward to.

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