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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love is…

December 27, 2011 at 2:29 am (family, friends, holidays, love) (, , , , )

this was my status on Facebook for the past few days. think everyone had an opinion? you would be wrong as was I.  2 brave friends stepped up to comment on this subject.  some may have been too busy with the holidays or just not sure how to respond.  my sister made the interesting observation that love is power and many of us know that power. it is not used for good as much as one might hope. the other response was that it is unconditional and we have heard that and hope to believe it but is it true?  my guess is there are many conditions on love or we would not have a 50% divorce rate, we would not kill our spouses and children, would we let our elderly be neglected if we loved unconditionally? no I can not as much as I would like believe in unconditional love. 

some of us have learned the hard way that unconditional love that is not returned but used as power for one person over another can be the hardest of all betrayals. 

this is in no way a recommendation, if you find yourself with a long-term terminal illness you will certainly learn what love is and who in your life values your love.  these people are not the ones who toot their  own horn and make a  point of telling anyone who will listen how much they love and how freely they give of themselves.  these are the people who may truly love unconditionally.  when you are throwing up they are holding your hair, bringing you a wet towel, being the laugh or cry you need to have. 

the man who shares my life and love gives of himself in this dependable and free way.  the younger sister, the 2 step-friend (step-daughters) and even their mother has a kind of love that she has shared.  there are friends and friends that feel like family that too is love to be treasured.  the love of grandchildren is like non-other and can not be compared to any other type of love. 

love may not always be unconditional, it is a gift given.  over the years I have asked myself if I am lovable or worthy of love, this is a question I still ask of myself,  knowing what a priceless gift is being given I truly want to  be worthy of such a gift. 

another holiday season has come and is going, my season may be coming to an end.  I have been more tired and pain has been more of a companion than in the past.  I feel like the girl who sings she could have danced all night and still have asked for more.  I will not ask for more but I have certainly danced all night for several days:)  it has been a wonderful time and going home on a cloud of music and love leaves me hoping for more!  if there is to be no more dancing I will dream and treasure the memories of  shared love, laughter and decisions made not to waste another dance on people who drown out the music.  yes ang I mean you!  others will carry on the joy of this dance of life for me and that brings me such pleasure I can only smile at the thought.

until we meet again, may you hear your own music, share it with those who are worthy of your love and define what love is for you.  don’t let anyone else define who you are, who you are not and what love is for you……

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this too shall pass….

December 20, 2011 at 10:31 pm (family, friends, holidays, hope, Uncategorized) (, , , )

one moment I am asking how much fun can a girl have and get away with it, the next I am getting the answer.  the last few days have been so much fun, seeing friends, getting out and just feeling normal for a while.  last night just before some friends arrived at our house I started feeling the physical toll that can sometimes come on so quickly I get whip-lash.  then they are at the door and life fills the room.  there is no room here for thoughts of anything but sheer joy.  baby g is dancing, tinliz who arrived in a funk seems to be breaking through, hd, or the baby mama, is looking tired but appears to be happy to be here with us in this moment.  k is her usual sweet self and it is easy to put worries aside for this time.  this moment, this memory being made.  every fiber of my being is warning me, how can I listen now?  now I am rushing toward happiness and the kind of love and contentment that feeds the soul.  this has been my hope and my goal all year-long, another holiday with my family.  whether it be one more or … the important thing is it is another year. another opportunity to love and be loved. 

so I have to believe that this will pass, the truth is even if it doesn’t I am happy.  hope lives here, here in my heart.  it is not the same kind of hope experienced a few years ago. it is so different as to be almost unrecognized. much like an old married couple who has loved for so many years they have not stopped to think of how their love for each other has become so much more than it was in the beginning.  my hope has become not that I will live forever but that I will live in the memories and hearts of others for their forever.

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Still here

December 7, 2011 at 12:16 am (choice, coping, death, doctors, end stage, holidays, hope, waiting) (, , , )

no one is more surprised than me, with the exception of my dr.   We met briefly yesterday and there is not much new to say.  we sort of look at each other and wait, the pause bothers him more than me, that is the training. I can sit and wait for however long it takes.  one of the hardest exercises for an intern is that waiting and not filling the silence.  it is a skill that was a gift long before becoming a therapist.  waiting does not cause me distress, waiting in line or in traffic? no problem.  this waiting is different in many ways. most importantly I am not anxious for the waiting to end.  this is a comfortable silence.  at times it seems daring to speak the words of the future plans, the waiting may come to an end, the alternative to planning seems giving in to hopelessness.  I am many things, hopeless is not one of them.  my calendar is at the ready and future lunch dates, dinner plans, birthdays to celebrate, these are already marked and waiting to burst forward at the right time. 

my dr. is a kind man and he is optimistic with me.  we both know we are waiting and seem content to chatter a moment, nothing new, we both breath.  he is going to be around for the holidays and this is reassuring.  it is comforting to know that if the silence is to be broken he will be with me.  there will not be a hospital visit as that might become a pattern I do not choose to establish.  the mother was diagnosed with a similar problem, it should not be so serious and yet it is. she has been in the hospital maybe 3 times now.  if you go they will keep you, if you build it they will come, they think if you come they must do something.  the secret is knowing there is nothing to be done and accepting it.  Chris asked me what the dr. said about my low energy, I tried B-12 and just got horrible nose bleeds.  there is nothing to say, it is not what he wants to hear.  these are the facts ma’am, just the facts.  my energy is pretty good given the situation, it is going to get worse.  we are spoiled by the quiet, we are waiting for the words to start.  yet we do not dare listen to them. they say it has been a long silence and soon we will have to talk.  I can wait, I can wait.

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the rolls royce in my chest and other thoughts

November 27, 2011 at 4:46 pm (dying, family, feelings and thoughts, gratitude, holidays) (, , , , , , , )

in feb of 2012 it will be 2 yrs since I had the Rolls Royce of devices planted in my chest.  as I lay on the table waiting for the procedure to begin a man started talking to me. he started saying how lucky it was that this device had recently been found to extend the life of patients with this particular problem. it seems that even though I am a rather good therapist the left side of my heart has been refusing to communicate with the right side of my heart. this has caused my heart to be out of sync and with all the problems it already has this is not good news.  it is freezing, did I mention, in the OR room? it always is, a nurse brings me a heated blanket and she has quickly become the kindest person I have ever met.  this man’s voice is coming from somewhere just beyond my line of sight.  he is saying it is the golden Cadillac, no wait it is the rolls royce of the implanted defibrillator devices.  mine, he says, has not just two wires but it has a third to force my two halves to speak to each other.  yes unlike humans my heart can be forced to communicate in a healthier way. I can’t help but wonder if a little shock now and then would make people open up and talk in a way that moves them forward?  this device I have not only shocks you if and when your heart stops, it is a pacemaker and the real coup is how it makes my heart beat as one, as it is intended to. 

stay with me here, it all becomes clear how these thoughts are connected, at least I hope so.  we have just returned from our brief trip to Charleston, s.c.   coming home is always long and tiresome. going, we break the 7 hour drive into two parts, we stay at a bed and breakfast the first night and then on to our destination. the idea is to be as rested as possible getting there and drive straight through coming home.  it doesn’t matter to us if I need a few days to recover once home.  the memories of the last few days are more than enough to compensate me for the down time.  each year the grandkids get more ….. everything.  they are becoming these interesting people with ideas and interests to share and questions, lots of questions.  of course it is great to see their parents, Susanne ( Chris’ first wife) and Heather.  my relationship with them all has come so far and is so gratifying.  these are wonderful people and I am so grateful for them, I quite literally can die happy now.  there is something about my life that releases me from any angst at what lies ahead for me.  my sister and I have a relationship that makes me proud of us both.  living so far apart can make it difficult to connect but we can pick up as though  no time passed.  it is my great fortune to have friends that feel like family and their texts and calls raise my spirits daily. 

aah the connection?  just a few months ago I decided to have the rolls royce disconnected. not that  I am giving up, I simply  do not want my dear man or anyone else for that matter having their last memory of me involve this device shocking my body even though my heart has given up the call to battle.  in the past my request has been to live a few more days, just long enough for one more memory.  long enough for my grandchildren to know me, love me and remember me.  that is so much and I dare not ask for more when I am so blessed.  maybe it is my optimism that brings me to the point of delaying this decision.  the timing is what I want to feel.  in the next few months it may once again feel like the right timing,  for now I am looking forward to another Christmas with my loved ones.  anything seems possible at this moment. maybe that is magical thinking as they say in the psychology books.  frankly my dear I don’t give a ….  ( Gone With The Wind was on)  it is still my intention to get disconnected, to visit the funeral home so I can do whatever paperwork necessary so Chris does not have to go through the drama of an autopsy.  do people generally know that if the loved one has been ill and under a drs. care an autopsy is not required?  we can talk about that later. now I am going to recline, wait for my heart to start behaving, and dream of all I have to be thankful for.  I hope you had much to appreciate this year, I hope you realize how much you have to be grateful for!

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road trip and the beginning of a new adventure

November 22, 2011 at 8:27 am (gratitude, holidays, hope) (, , )

tomorrow we leave for our annual trip to Charleston! it is hard for me to reconcile what the drs. say and how I am feeling at this moment.  we were at Costco and gathering some treats to take to Charleston for the grandkids and of course some grown up treats as well.  Chris remarked about it being another year and asked me how it felt. how does it feel to be living through another holiday season? it feels fantastic and I am so grateful to the universe for this gift. 

saturday the conversation was much more serious and trying not to show my hand, while still warning Chris of what was coming, very quietly I said “we need to do our shopping today.” I did go on to tell him I felt a crash coming on and told him not to worry it was not going to interfere with our trip.  truth be told I had no idea how bad it was going to be but I could definitely feel it coming on hard.  once we were home I was out and barely remember sunday at all.  none of that matters tonight as we pack for our trip.  last year at this time I was entering end stage and knew it instinctively.  funny term end stage, last act of the play, lights turned up and everyone can go home now.  enjoyed the show, yes I have enjoyed the show.  I wouldn’t have missed a minute of it, if you miss one moment it forever changes the next moment.  it is good to be in this place right here and right now.

my hope is that times like saturday and sunday are easier for my love due to the soft way I whisper it in his ear.  “don’t worry it will only be for a day or two at most,” ” we are going to be fine and we are going to Charleston.  Charleston is the time at the end of the Georgia/southern heat when we can travel the 6 hours to spend a few days with our family.  the Atlanta daughter will be there and the Charleston daughter, son-in-law and 2 grandchildren.  we will be fortunate to visit with the much-loved daughter’s mother and the son-in-laws mother.  Susanne (wife #1) has been generous of spirit and shared her lovely daughters with me.  she is a wonderful mother so I am not quite sure at times how I fit here but we make it fit.  we have gone beyond the fathers wife but never really the step-mother.  no matter what the label I am in love with them all and can’t wait to see them again.  the sounds, the smells, the activities, son-in-law frying the turkey, all those things I have looked forward to and here they are.  if I don’t live another day when it is over doesn’t really matter, I am here now and that is all that matters.  now.

for families who have lost a loved one my heart goes out to them. for those who have lost the heart of a loved one and been left with the shell my heart goes out to you.  please give yourself something this year, take a bit of time for yourself, just you and whatever makes your heart sing.  no one can judge you harsher than you judge your self, so please take time to live as if you appreciate your life.  dance, sing, or cry, whatever you need for your soul, just do it.

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How does it feel to die?

October 29, 2011 at 7:11 am (holidays, how does it feel to die, how to die in oregon, increased suicide during holidays, suicide/suicide ideation, Uncategorized) (, , , , )

Now we can google just about any question. I decided to google how to die. most of the answers were giving advice about suicide, or in one case it was a counseling site that suggested you decide who you wanted to leave your assets to (and by the way they would be happy to help you leave your worldly goods to them).  there was a site where a dr. had written an article outlining some guidelines such as the right questions to ask your doctor, and then back to the fundamentals of what to expect when you are in the hospital, and how the patient can make sure they and the family are following the hospital protocol.

My search was in hope that someone else was writing about this from a personal viewpoint and could share with the rest of us some insights.  Ever since my friend asked if I was afraid to be gone, I have wanted to explore that further, and understand what that really means both as a question and how it can be answered.   one question would be is it  distressing to experience consciousness slipping away or something people can accept with equanimity? equanimity meaning,  emotional stability or composure arising from a deep awareness and acceptance of the present moment.  for myself I believe, and hope, that I can continue to experience the same peace I have now at the time of my leaving this world. we each have to experience life’s trials on our own and in our own way, understanding that does not change that I hope for family and friends to share in my joy of life. I can not stress enough here that each moment I share with others is such a gift and I appreciate each and every one.  if I could wave a magic wand, there would be no sadness, but that is our nature to be sad at the time of loss.

the comfort of long relationships, as well as the anticipation of new and growing friendships, are a large part of this period in my life.  how does it feel to die? how does it feel to live? each of us experiences these events in our own way in our own time.  I am hoping that how we have lived gives us insight in to how we will die,  not the time or place but the actual leaving this body. How To Die In Oregon was a great documentary and exposed a controversy that many would rather not have to deal with.  It did not really tell us how to die. maybe that is something no one else can tell us, we must experience it in our own way.

many people suffer depression, and statistics say suicide/suicide ideation (thinking of it) goes up during the holiday season. I for one will not be thinking of it and am blessed with enough  light in my life that depression has no room to enter. for those that will suffer, I can only wish for them to seek out others to talk to and to remind them that everything can change in the blink of an eye, so don’t close that eye just yet.  I believe that I will enjoy another holiday season but if it not meant to be I will be grateful for the ones I have had.

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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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