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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keep making that to-do list

December 16, 2011 at 1:44 am (coping, gratitude, joy) (, , , )

4 a.m. is a great time to work on the to-do list.  by this time any hold out for sleep has passed, time to organize the cd’s or all those pesky plastic storage containers that disappear with the socks in the wash.  if that is too much then it is on to the list.  the mind boggles at the idea of some who seldom make such a list.  it has been my habit for many years and has served me well in general.  at the beginning of this journey one way to cope and put things in to perspective was to revert to the list.  to my joy this has turned in to a multiple list job.  vikto frankyl recommends we find the joy/purpose in our life and we will be able to face even the most devastating circumstances.  if it was good enough for this holocaust survivor it seemed good enough for me.  as the list has diminished some concern/thoughts turned to a quote stating that is when you know you are done with life. if there is nothing else you want to do (and I am hoping they mean the small things like waking up) then there is a void and death sneaks in to fill it. 

it may be purposeful indeed how some items on my list are still outstanding.  now after a conversation with my man it occurs to me how I can do something that will bring him joy in years to come.  he often says he is not of this era and feels he has been left behind by technology. it would seem geekdom in our family belongs to me.  as de-cluttering continues at a snail’s pace, it is apparent the old vhs tapes are not going to be donated and will not be enjoyed in the future unless they are converted to dvd’s.  this it seems has made me almost giddy, do you know how long it is going to take to complete this task?  I am not the kind of person who walks away from a job not finished and it is such a gift to add this to my dwindling list.

after christmas, sharing information regarding what a caregiver can expect from a terminal loved one is on the list.  fascinating that a m.d. would think himself qualified to write this. it is almost laughable, it begins pretty strong and quickly goes downhill.  this is not a person who has suffered personal loss.  projecting some months to the new project and then there are always holidays, birthdays and …. well the list does go on.  one more thing to be grateful for, think I will put it on my list:)

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Mourning for Christina Symanski: Better Off Dead?

December 14, 2011 at 2:15 am (assisted suicide, choice, coping, death, death with dignity, family, hope, how to die in oregon, life is random, moving forward, Uncategorized) (, , , , , , )

anyone watching “how to die in oregon” could come away with several thought-provoking ideas.  one that, in my opinion, was fundamental to the documentary is the choice/ability to change ones mind.  if you opt for assisted suicide or ending your life with “dignity” there will not be a chance for that very basic tenet.  until recently I have held firm that it is the right of the individual to make that decision for themselves.  in my mind there are qualifiers, you must be terminal, in your opinion( and not the opinion of others) your life has ceased to have meaning or dignity.  it is still my belief that one person can not understand the full gravity of another humans suffering….

that is until I became aware of Christina Symanski.  if you are upset easily with what may seem to some as a harsh interpretation then I ask that you not read further. if you do please keep in mind that it is one persons opinion, mine, and that is the only one I can voice here with real understanding and honesty.  initially the reaction to her decision was the standard not for me to judge. it is not my intention here to judge her as a human only the decision and what it was based upon.  she truly suffered, in the blink of an eye she made a rash decision and paid for it dearly.  in 2005 this young woman was at a party, she became frustrated that others were not going for a swim and so she dove into a pool that was not to capacity.  as a result her life as she knew it was ending, it could have been a beginning and for some that is what it would have been.  only another quad would be able to have more than a cursory knowledge of this way of life.  yes I said way of life, it was different from what  she had experienced so far. to some it would have been a change in lifestyle, to her it was the end of life as she knew it.  on a smaller scale my own experience took me from extremely athletic to sedentary.  this was not by choice and certainly took adjustment.  while not on the same scale it gives me a glimpse some may not have.

on the outside Christina appears to have so many reasons to value her life, yet she made the decision to end her most precious gift.  having a mother with a serious disability gave me a different understanding of how to cope with obstacles.  even now with numerous health problems and post-polio syndrome marie does not consider( to my knowledge) ending her life.   the question that seemed to repeat itself throughout her blog was why me?  it has been my choice to ask why not me?  the what if game can lead to crazy making thinking.  it is my belief we are where we are supposed to be at any given time so it would stand the what if does not have a place in my life.  certainly that does not preclude learning from mistakes.  there have been many along the road and I anticipate making many more.  it gave me a chuckle, and I hope I can be forgiven here, to read about a man with Parkinson’s who fell trying to something he wanted to do and yet most certainly knew it would not come out well in the end.  I laughed and laughed, not at him but at myself and how we give up such ideas only when faced with very real danger.  at times my physical being is so weak that I trip and fall quite easily.  last year while my husband was away it was my belief that I could go down the few stairs in front without holding on. what was I some invalid?  out I go and down I go, very hard it should be added.  over the front and into some hedges, as I lay thinking of my humiliation it occurred to me that the neighbors could not see me due to the hedge.  so taking my time I eventually made my way to a sitting position, drug myself to the stairs and in time back to the house.  a few days later, hubby still gone, it seemed reasonable to try again. of course I had learned my lesson and was prepared mentally if not physically.  was I none the wiser? well yes and no.  as I began to fall it occurred to me that the army training would be valuable about now.  so I looked to the side of the porch and pitched my body that way as it would be a softer landing.  it was farther down but it was softer.  the farther down part made it a bit more difficult to maneuver back to the porch, however being in one piece gave me spirit of heart.  until his return the garage became my exit and entry as it was easier and safer.  

 laughter seemed to be missing from her writing.  it is not that she didn’t experience laughter it just occurred to me it was absent in a way I can not explain.  although she was involved with good works, was able to continue as an artist and had time on her side, she must have been so sad.  not sad  in the common way we may feel sad but down in your heart and soul sad.    the kind too many are not able to recover from.  

this one time I will allow myself the what if question, what if this young woman had been able to wait, and our system of healthcare could have given her another option?  was she just destined to this end? that is one possibility, there is no hope in that answer. no hope is really what killed this young woman.  she will be remembered by many, for as many different reasons as there are people.  she will be remembered here in this house and her death has given me more  questions  than answers.  a life gone too soon. her choice.  I will respect it was her decision.  like every decision we make it will continue to affect others.  those that live are those that live with our decisions.

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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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