nowhere in particular

August 31, 2012 at 3:03 am (anniversaries, how does it feel to die, the dr. says) (, )

watched anne  of green gables the adult years.  at the very end she says it is better to be anne of green gables than anne of nowhere in particular. at times i almost turned it off as the young girl anne was a bit over the top and definitely histrionic.  as an adult she was much more interesting.

it was all worth hearing that last sentiment.  until i met this amazing man the person from nowhere in particular was me.  until i was 14 my home was with my grandmother, however, the queen mother would demand our presence in her court a couple of times a year.  some years it may have been just once with several threatening messages to remind my grandmother that she had the power to take me away anytime she wanted.  my grandmother would say we just had to do what she wanted so our life could go on as normally as possible.

at the age of 14 my grandmother said we were going to california and this time i had to bring everything with me.  since i had been very young each time the call came i would tell my grandmother that she should “forget” my stuff.  until that call we knew she was never going to make me stay.  this time was different. this time we knew she meant it.  when we arrived she sat us down and told us she was pregnant and would need me to stay and help her. she already had one daughter (the middle sister) and she just couldn’t handle another one alone.  this was a bit of a shock to both of us and they wanted time to talk alone.  outside my dad(step) was working on a car.  we had always been close and he had never treated me like anything other than his daughter.

dad and i had a long talk and in the end, even at 14, it made sense for me to stay.  that new baby was going to need me and middle sister definitely needed my protection.  when the baby came, my beautiful baby sister, i was in heaven.  she loved to get up around 5 every morning and the mother would wake me up to take care of her.  at 16 it was clearly best for me to leave.  off i went back to my grandmother. it should be added here that i didn’t leave with her blessing.  after a few months the threats were made that i would be picked up by the police as a runaway.  the threats came more often and the decision was made for me to join the military.  at first we(my grandmother and i) were told because i was under age nothing could be done.  the recruiter said only being married would emancipate me.

you may have guessed, i got married.  when i went back to the recruiter he said my grandmother could have signed for me.  oh well, i was in and off to the world.  after years of traveling and moving i ended up in california.  at the age of 36 a widow and just lost.  for the first time in years i just wanted to be still and be from somewhere.

20 yrs ago, at work, i saw him.  the rest is history.  like anne of green gables said, it is better to be of green gables than nowhere in particular. it is better to be of a loving family, whether it is california or georgia, i am not of a geographical place but of a place of love.  that is the best place on earth.

my grandmother

corny but true, it was love at first sight:) and has been love for ever since.

 

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lost days

August 24, 2012 at 12:34 am (angina, heart failure and exhaustion, road trips) (, , )

days that i am exhausted beyond explanation and end up sleeping most of the day are my lost days.  it started wednesday night after speaking to my sister on the phone.  i fell asleep waiting for her to call back after an interruption.  husband worries that if he wakes me i will not fall back asleep til wee hours of morning, as that has been our experience.  so i woke in wee hours, decided to blog and went to bed around 4 a.m.  falling asleep easily is the first clue that i am in for a lost day.  sleep was heavy and nothing made me stir until almost 1 p.m. when he is off to bridge.  shaking off the cobwebs i stumble around and manage to get my shower.  the whole time my body is screaming to lie down and close my eyes.  the lie is it will only be for a few minutes but i am not buying it. i know it is a trick.

although i am feeling weak and a bit dizzy the annoyance pushes me to make an errand run.  in my mind i can do so much more than my body will let me.  i fancy a short stop for a little shopping and reach the rear of the store and  become short of  breath.  tightness in my chest.  the mind says you can stay,  your body says if you do things will not end well.  so with some regret i move to the front and out the door.  on to the post office which was my errand.  then it occurs to me i could run by the pharmacy, just as quickly the pressure in my head and dizziness reminds me that getting home is the priority.  a few hours have passed as i walk through the door at home.

he is home and i ask if he would like to lie down for a bit.  sometimes he is like a child, no i don’t need a nap.  ok but would you come and lay with me until i fall asleep?  ok but i don’t need a nap.  his head is barely down and the familiar soft snoring begins.  our little cat that stays in our room most of the day snuggles in and i am off in dreams.

the meowing is soft at first. it grows louder and a little swat with the paw follows.  she is losing patience with me. it is her time to be in the living room and i am keeping her from it.  my eyes open and it is nearly 8 p.m.  trying to appease her with promises of soon, she is becoming more insistent.   a bargain is struck, she will get down and take care of business and when she is done i will get up.  the look on her face is skeptical.  as promised though i drag myself out of bed.  while laying in bed listening to her make her way around the room my thoughts stray to how we first met her. for some reason it then moves on to our first road trip.

every couple should have to take a road trip before getting married.  we realized just how perfect we were for each other.  this is our older/smaller girl ling.

 our first of many road trips

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blogging is writing

August 23, 2012 at 1:35 am (Uncategorized) (, )

one of my favorite bloggers has declared that blogging is writing.  SHE is absolutely a writer! everyday i watch for her latest blog.  sometimes she says she writes too often and i have wanted to tell her how much i look forward to her blogs and if i have a vote it would be write away woman at least one of your fans is disappointed when you only write once a day.  however, i am not a writer.  i have written too many reports for agencies, courts and various grants yet have never felt like a writer.  don’t feel sympathy for me, i am ok with not being a writer.

i am not a beauty.  my youngest sister just had a birthday and she gets more beautiful with each passing year.  yep this is her and obviously gorgeous. she is also funny and smart.  i have every reason to hate her:)  of course i love her absolutely though.  she learned at an early age that i was easy pickings when it comes to her. she can make me laugh and that is priceless.  i admire that she is a woman’s woman. she would never ditch a girlfriend for a guy.  her ability to make lasting friends is admirable.  i am not someone who who attracts others the way she does.  i am ok with not being beautiful or a social butterfly.there is a long list of what i am not and again i am ok with that.  yesterday i was thinking about this and decided to share something that few people know or would guess.  i hate my voice.  yep i have always, as long as i can remember, hated the sound of my voice.  at least no one can say i “love the sound of my own voice.”  every time a class required a presentation it became a numbers game for me.  my first thought even through my post-grad work was could i not do the actual presentation and still pull out an a?  sometimes i could and others it was bite the bullet.  it was a surprise each time that people didn’t boo or throw rotten tomatoes.  so completely out of character while living in calif. i actually volunteered making recordings for the blind.  several times a week i would go to the studio and work on a new chapter of a book or even the daily paper.  as long as i didn’t think about someone else listening to my reading all was fine.

with all the things i am not the most important things to me are that i have peace of heart, am challenging myself by sharing through this blog and have love love love.

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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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the dr. says and how to die in georgia

August 20, 2012 at 6:19 pm (ask the doctor, how does it feel to die, the dr. says) (, , )

last week i had to go to the dr.  this is a trip i have been trying  to postpone as long as possible.  finally my body could no longer be ignored so off to his office i went.

first observation- you missed your last appointment.  the rebel in me wants to say “no i didn’t miss it at all.”

second observation- i don’t worry too much about you as you know more than the average patient.

third observation- you have more fluid retention than i would like.  me- then it is more than i would like too. it is however congestive heart failure.

last observation- we need to do lab work, i have some concerns.   me(thinking) i will have more lab work when hell freezes over.

he is a new grandfather so i ask about pics and he is more than happy to oblige.  i remark how much happier he looks since leaving his previous group and joining this new one.  he shares how much weight he has lost, sleeps better and just feels better in general.  this is good news.  a happy dr. is like most of us, the happier the better we do in life and work.  i have come to care about him and know we have a great relationship.  neither of us would ever cross that line and take care to let each other know where that line is.

ling on my lap relaxing. one more reason to go ahead and have that lab work done.  i have too many reasons not to go ahead and let them stick me and wait for whatever news it brings. maybe i am wrong, maybe  my kidneys are fine.  maybe i will have many more evenings sitting with one of the kitty’s on lap.

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Don’t Ask, Don’t Tell?

August 20, 2012 at 5:29 pm (don't tell) (, , )

every day when i first get up he asks “how are you today?”  this is where it gets tricky.  my auto-pilot answer is I’m fine.  he says “no really, how are you?”  “i won’t ask again today but would like a real answer.”  so do i go down the list of aches, pains, and frustrations?  this feels wrong.  my love for him says to re-assure him.  sometimes i want to do a jack nicholson from the movie and yell “you can’t handle the truth!”  he can though. he has handled the truth, brick by brick over the past 4 yrs.

we are in the car headed to an appointment we are both dreading.  one of our tenants have given notice so we are going to do a walk-thru of the house to see what expenses we’ll have before new tenants move in.  somehow the conversation has led to me saying sometimes i feel like an imposition.  to him certainly, so many things have changed for him as a result of this illness.  others in the family are imposed on in smaller ways.  even friends that have remained are imposed on.  many know that plans can be made, however, those plans can just as quickly be cancelled.

he tells me and i believe him when he says that he hopes i live a lot longer and we will just deal with the limitations as they come.  sometimes we all need to be re-assured.  it is my blessing to love a man who is able and willing to give me that re-assurance.  it is my blessing to love family and friends who are willing to make adjustments when needed and re-assure me that i am not yet at the point of being too much of a burden.  that thought/fear is never far from my mind.

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rights or privileges?

August 18, 2012 at 10:49 pm (rights or privileges, the dr. says) (, , )

because i am the mom.

because i am the boss.

because i am older.

because i am the one dying.

just a few of the excuses used to justify bad behavior.  if you turn these around it becomes because i am_______ it is my privilege to be kind and thoughtful.

i have and am all these things, a mom, a boss, older and dying.  with each of these privileges comes the responsibility to be as kind and thoughtful as possible.  none of us are without faults so it would be arrogant to say i have always lived up to these responsibilities, however, i lay my head down each night knowing i have done my best for this day.

my grandmother told me that success at the end of your life is to say “i have been a good human being.” i hope she is proud of the person i became thanks to her love and guidance.

i am honored to be a mom, grandmother, wife and sister.  it is my joy to be a part of their lives.  though for me, and others like me, we live with the fact that death is just around the next corner.  that does not give us the right to be disrespectful of others, especially those we love, or to be anything less than kind/loving.

 

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when the caregiver becomes the Care giver

August 17, 2012 at 12:44 am (being remembered, caregiver, end stage congestive heart failure, Uncategorized) (, )

there are cases where this does not apply of course so this is just an observation and concern in my own situation.

now that i have given the disclaimer let me share what has been on my mind for some time.  it is one thing to be called a caregiver simply as a result of being the loved one of a person  who is, ahhhh….. well the one who is suffering from, in general, an illness. it is another to actually be giving personal care to your loved one.

when doing therapy with couples one thing to watch for is does the couple share power or is there a one up situation?  in the beginning of our relationship we had to work some things out.  it was really on me to be responsible and though it would have been easy to let him take care of me, the way to earn his respect was to stand on my own feet.  now we enjoy a loving partnership.  he may be 20 years older, however, we are both clear on the fact i did not need a daddy.

being ill means there are so many things that i can no longer do or need help.  i do not accept any help with personal care.  once that happens the relationship changes.  the way you see yourself and the way you are seen changes.  when my grandmother was in the last stages of her disease i would have done anything for her. no limits, after all she had taken care of me when i was growing up.  she would let me wash her back, we had a deal that she would not get in the tub without me around in case of emergency.  in her wisdom she balanced being my grandmother and being a patient.  she trusted me with all her medical decisions and it was an honor to watch out for her.

i have been observing couples who are in a situation where one person has become the Care giver.  over the past couple of years i hear an edge in a voice that wasn’t there before.  an impatience and frustration has crept into their voice.  the  person who is ill can start to resent the person they love and who cares for them.  i read blogs trying to understand how someone feels becoming the one who carries the whole burden on their own shoulders.  my heart breaks when i read the stories of wonderful people who are in an impossible situation.

how do you give your love and support to the person you love and still have a life of your own?  these  stories give me hope and guidance in my own life.  it may be unavoidable yet i cannot let myself believe that.  i keep my love,  his health and happiness is my first priority.  i want to be remembered as the woman he married and i know it is up to me to make that happen.

 

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him without me

August 11, 2012 at 2:38 am (anniversaries, being remembered, how does it feel to die) (, , , )

do you ever wonder how life will be for those you love after you are gone? earlier in the week we were in savannah georgia celebrating our anniversary.  as this is most likely my last year (but who knows?) along with enjoying life and being in the moment there is this undeniable reality.  it is always just, right there, waiting for me.  like some shadow that is only visible when from the corner of my eye.  it does not overshadow our life, just waits there.

words fail me as i think of how to share what is attacking my body even as i type these words.  lying in the bed next to him as he sleeps, trying to ignore the rash that now covers almost my entire body, my mind wanders.  it wanders to the time to come.  that time when it will be just him without me.

in  the past my questions of that time to come has been met with resistance.  this, i realize, is how a majority of us react except when we think it is some vague possibility in years to come.  have you thought of this?  how will you be without that person who has shared your life.  that person who is like an appendage, that person who knows you as no one else has ever known you.

it crosses my mind how in many ways he will be in a better place.  no one to hold him back as he is now.  him without me may seem strange to him at first.  him without me is at times difficult to grasp fully.  him without me does not mean him without my love.  my love will live in his heart as long as he lives.  our family will remember this time of him with me.

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anniversaries

August 6, 2012 at 1:45 am (anniversaries, death, how does it feel to die, joy) (, )

17 yrs ago we headed to Lake Tahoe and got married.  a month later we had the wedding that had been planned for several months.  this was not the first marriage for either of us and yet it was the first marriage in my heart. from the moment i layed eyes on him 20 yrs ago life has been truly a joy.  not that we have a life without strife.  for some reason this is difficult for me to write about.  how to put in to words, without sounding like a braggart, the difference in life now vs. the b.c. (before chris).

b.c. life :  there had been a marriage previously entered in to with hesitation and doubt.  it ended abruptly with his death.  there had been little happy moments yet nothing memorable.  most days were white knuckled hoping he didn’t get drunk and gotten behind the wheel.  he was a troubled man with a troubled past.  i was a nurse and he was a patient.  after nearly dying of alcohol poisoning he turned his attention to the nurse who runs the stairs everyday.  when well enough he is off to rehab and sends loving letters.  they would be  the only loving words for the next 10 yrs.  that was then and i have let go of those times.

tomorrow we are off to savannah.  the trip will be exhausting, we both know that.  one more reason to love and treasure this man, the ease in which he accepts these changes that affect his life.  mornings in the past were early rising and chatter.  now it is late rising for me and so he  is on his own most mornings.  past trips were spent wandering the streets, antiquing, walking much of the time.  when first planning this trip the conversation addressed the possibility he would go on his own to do some of the activities he enjoys and are no longer an option for me.  just remembering the conversation brings a mist to my eyes.  my love dismisses being on his own and suggests carriage rides, the wildlife refuge, and a visit to a tea room.

will this be the last wedding anniversary?  it is likely to be a last.  since entering year 5 the thought is never far from my mind.  to think that statistically people with this diagnosis do not live to the end of year 5. that is an anniversary and a reminder of what is coming.  as we plan our getaway, our 17 years of love is the only anniversary that matters.

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