4-28-09 – Amy… end of life stuff – “people are better than no people” quote that spoke to me

so we’ve been pretty sick.  ugh  sick sucks.  I hate sick.  i’m sick of being sick.  sick and tired of it all.  just tired  

anyway i finally dragged myself outta bed a while ago cause ___’s coming and turned on a recorded show on tv.  according to the tv, its supposed to  be Samantha Who.  i lovet hat show.  but it wasnt.  its some medical show. 

and the recording starts in a hospital room and the scene is the fam sitting alll around this lady’s bed when she suddenly flatlines.  docs come running from everywhere like we’ve had happen to us before, and one of them shoves a family member outta the way and tells her and the rest of them to get out.

i gues its the daughter says “are you gonna let us know”?  and the doc gives her this die look and says snidely “yeah i’ll let you know”.  nd then he calls them bastards as they leave. 

then he immediately turns his attention to the lady that aint breathing and does that chest shocking thing on her and yells at her to come back and says essentially “dont let the bastards win”.  and it brings her back to lfie and she looks around disoriented.   

the doc’s face softens and he says “hey your a fighter you kknow that?  you’ve worked hard today”.  and he turns to a nurse or whatever and says “she needs rest.  see the family and be sure they dont come back in here.  give her a break from all the ‘love’”. 

and the sick lady says shockingly emphatically for somebody that just wasnt breathing a minute ago “no”!!! then she looks all tender at the doc and explains “its been a long time.  but they always come” (assumably every time she almost dies).  then she says “these are my people.  People keep you going.  people are better than no people.”

sigh  sometimes you feel so alone.  you try so hard to hold on to your faith in God and be grateful for yet another miracle of extended life, try to be grateful for every extra day, every extra minute, and especially be grateful for the few that still wants to be with you every minute they can and tell you allla time how much they love you and love being with you. 

and yeah we been told lots, explained over and over to us, how its normal for people to draw away from and visit dying loved ones less nd less, spend less time with them, cause its hard on them to watch their loved ones go thru end-of-life stuff.  but oh trust me, its harder to life it.  at least the ones with family members/loved ones in that situation has got choices.  when your the one, your choices is limited dude.  and almost all the choices you do get revolve around the choices of themwho love you but they get overwhelmed and tired of it all and stressed out from watching their loved one hang on to life, and so they drift away and not only dont make hardly no memories no more but leave the care of that person they really do love so much in the hands of whoever is willing to do it.  and if that sick/dying person is real lucky, then at least one fam member is willing to do it and if they get overwhelmed and cant do it alone no more maybe God sends a angel to help them like He did us when he sent Jess/hom.  yeah we aint stupid and got rose-colored glasses.  we know Hom aint an angel but they are to us cause they came when we needed them to help john when nobody else came.

But then another crisis hits sudden, or maybe gradually comes on and becomes another obvious life or death crisis – and they come.  they always come.  but in between they get overwhelmed and tired of it all and stressed out from watching their loved one hang on to life and suffer.  and peple dont like to watch nobody suffer.  normal people dont anyways.  watching soembody suffer is hard.  so they drift away again – until another crisis of life or death – then they come cause they always do.. 

whats so very very sad and tragicc most of all in these situations i thihnk is that the loved ones lose understanding that those times between the life and death moments are gifts God’s given us all - and the thing about gifts of any sort is that they can be treasured or squandered.  its like people forget or something the power of a few minutes of time laughing and remembering fun/cool stuff, or taking a while outta their day to do something together they used to do with that loved one.  and i think they especially forget the powers of a kind word and a hug but i’m tellin g you these things can lift the spirits of a person on home health trapped almost totally at home or even more horrible trapped in a nursing home, these little things like kind words and hugs can last for weeks or months or even all the way to the end of however extra long God gifts us with cause not only can we experience every minute we can get with them that wants to spend it with us and still thinks we’re worth something even tho we ourself just see ourself as sick and worwthless – i think loved ones dont understand that a kind word,, a hug, a little of your time, a special treat or little gift or homecooked meal or taken out to eat – any these things and so much more – such little things to you – are treasures to a person trapped in home health/longterm care, end-stage care, suffering – treasures that make us have the strength and courage to fight another day, hang on another day, get up another day cause just these little things make us feel loved.  and when a person feels loved and valued oh man they can climb just about any mountain! 

and i think and loved ones dont understand that these acts of kindness and nice words and your time is more for you in the long run than for us cause your gonna be the ones left when we’re gone.  we’ll be free at last of all the pain and suffering and sickness and feeling worthless and useless and unimportant and cant do nothing right and and and cauase we’ll be with our Lord in Paradise.   so i feel sorry for them that’s left with the coulda shoulda wouldas cause we been there, and we know it can eat you up. 

*

for us now, its too late for anger and bitterness at this point, ya know.  too late to hold on to grudges and perceived (or real) wrongs.  too late to refuse to forgive.  just plain foolish to hang on to old stuff that cant be changed.  its the people gonna be left be worry about cause it’ll all stay on you after we’re gone to Heaven.  This is the gift time God gives some people.  and sometimes I marvel myself at how many extra gift times God’s given us,, how many times we been supposed to die by all accounts and somehow didn’t.  but this is yet another gift time from God for each of us to do with as we will.  dont squander your treasures or anybody that was EVER a treasure to you.   

shoot we lay here and remember things that happened a long time ago when somebody we didnt expect came to visit or gave us a call or brought us a little gift or called and said “get dressed. i’m buying you lunch and we’re goign to the store or gonna buy flowers or whatever.”   or just showed up with food you know we love (of and if you made it yourself we’ll just bawl from gratitude altho Jess/hom being here so long now has pretty much freed us from that humiliating reactionn cause they’re so wonderful and cook for us wonderful tihngs alla time and cause of them we’ve blown ALL the docs and home health peoples predictions of the possibbilities outta the water) .  what i’m saying i guess is right or wrong (and oh god evidently we made lots of mmistakes in our life) but we choosing to live in this debiilitated constant horrific suffering state on freaking opium patches for god’s sake for you – we shouldl be long dead.  we’re supposed to be dead.  how do i say this.  i’m scared i’m gonna get yelled at. ok here goes – sometiems, just maybe every little once in a while, please choose me – even just for a few minutes,, a few knd words, a hug

anyway dammit i cantstay on topic.  point is i donno.  this little snippet of a show  i happened upon just struck me ya know.  like ok well we aint the only one that goes thru stuff like this if its actually been studied by pros and stuff and shoot even being made part of a medical show.  still sucks tho

and whatever i guess but you cant make people do what you’d do.  or have done yourself when you was able in the same situation.  or what you think is the right thing to do.  it aint your decision no more.  actually hardly nothing’s our decision no more.  anyway i hope somebody somewhere listened to me but the way it generally goes with me, that aint likely.  whats much more likely is that i’ll get yelled at for saying something wrong.  but sometiems its like i wanna scream/cry/beg/plead dont anybody wanna spend last times with us hardly?  its like we wanna cry out “hey!  I still got lots to offer even tho i’m so sick.  look at the ______.  they still adore us and treasure every minute with us.  we can still make memories. oh please make memories with me/us!  you will remember them later and treasure them.  we been there.  we know.  we promise and if even one person anywhere – whether we know them or whether they’re just sombody that happens on to this – if my gut-spilling here made any difference for the good i’ll be so happy, not just for the sick and dying peoplew ho feels so alone and forgotten, but for you if i helped you understand that you gotta do so little for people in our situation to make our hearts sing.  if it just aint doable then k then. whatever i guess.  i tried.

just me amy who dont even count anyways to hardly nobody

4-13-09 – Amy… FYI – I’m gonna post some people here’s old stuff cause I wanna

a long time ago, Eve ran across some things that peple here had written but not posted or maybe not finished, and she posted them here as entries.  i think that ws a pretty cool idea so I’m gonna do the same since i just came across some things that people here had either written and never posted or maybe posted in one tiny place we tried to go after the attack that i think are cool or insightful or whatever.

maybe they’ll help us or somebody else or help us understand ourself better or others understand us.  anyways even tho it might be a waste of time, i’m gonna do it so here goes 

ok yeah i guess I’ll back-date them too like she did so they’ll be scattered in throughout the journal

amy

4-07-09 – Amy… “if today was your last day” – this song coulda been written about our philosophy in this, our end-time – - addendum by Kelli on 5-29-09

 

this makes me cry.  i donno but in the end I think everybody wants to have mattered, wants to have made a difference, wants to be loved, treasured, missed after we’re gone. 

we’re trying so hard.  so hard.  so hard

 

NOTE:  adding this on 5-29-09 cause the link stopped working so had to find another vid.  I just wanted to add a plea to anybody who might see this vid to never forget the lyrics.  Please learn from somebody living the reality “if today was your last day”. 

please, for your own sake, start livng your life by this priciple if you dont already.  don’t let your old hates or angers or fears - or whatever’s stopped you in any situation – stop you. 

dont go to bed angry.  dont hold grudges. 

never forget that you might not get to tell a certain person you love them tomorrow cause your too busy to take the time to today or some shit’s gone down between ya’ll or whatever and your afraid to approach them – of just dont feel ready to or or whatever –  cause like this song says

“what IF today was your last day?”

you never know in this life we got about from day to day if some kind or thotful thing you might say or do for another might be your last chance.  something might happen to you or the other person that’ll prevent any more chances of ever hapening. 

don’t piss away your chances in life - whatever they are or whoever they’re with - cause, when the oppoturnity is past or the person or you are  gone, the ones left are the ones whos gonna have to deal with the what they coulda done or said.

that’s all.  I aint written anything anywhere in  really long time but I just felt like I had to make a plea to people, to anybody that might see or happen on this entry – and i hope that you’ll never hear this song the same way again – as just a cool song – cause what it actually is is a plea not to waste whatever days God gives us.  so i hope i helped soembody.  i tried anyway.  i just had to

 

Kelli (and I wrote in orange cause my fave color is yellow but there aint no yellow that shows up well enough to read)

4-5-09 – Drake. . . Aerosmith “Amazing” – seems appropriate right now

Of course, anyone who knows me well knows I think Aerosmith rules.  I’m a total Aerosmith ballad fan.  This song is one that speaks to me on so many levels.  J, your one of those levels…

D

4-05-09 – Drake… Pedro Zemora quote on being counted

It doesn’t matter whether I die or survive.  In the big scheme of things what matters is that I stood up and was counted.   …Pedro Zemora talking to “Real World” executives about his decision to become an activist regarding AIDS 

* 

So many times in my life it has seemed to me that few people are willing to step out there and be counted for anything – no matter how much they believe in the rightness of doing so.  Why?  Well, I think because the literal moment of choice to step out, reveal yourself, stand for something you believe strongly in – knowing full well that, in doing so, you could very possibly be making yourself a target, and aware of the potential cost to yourself and even possibly to your loved ones…

that moment of decision is a deep personal test for the presence within one’s soul of a defining combination of character and courage with perhaps a dash or more of foolhardiness.

In my own situation, in the end, will the fact that I (my system) have stood up and been counted on the issues we’ve chosen matter for good?  In truth, I don’t know.  I can only hope it will.   But, I do know that it would have mattered if we hadn’t.

Drake Aaron Phoenix

4-4-09 – Drake… Jess/Hom’s been here a year today

 

Jess/Hom came here to stay/live with us a year ago today - to take care of us, keep us out of a nursing home.  we were later told by one of our medical team that the predictions at that time on us was that we had 1-2 months tops left at home before being forced into nursing home placement.  And this was after they had come, i think, three times post-surgeries in the about half year preceeding that so that we could be discharged to home from hospitalizations and surgeries since we had to have around the clock care for periods of time each time.      

God sent Jess/Hom to us, of that we’re certain and grateful.  She/they renewed our faith, not only in our Lord but also in humanity. 

 

We had been friends for about ten years, best of friends for probably half that.  Jess was one of the very first personal friends I made upon emerging, and we’ve remained thiiiiiis close ever since.  Nobody outside in RL knows me better or loves me more than Jess.  Never has, and I’m sure at this point, never will.  I know this.  And I love her just as much. 

 

J gets me.  and, in this reality/trap/situation we’re in as mults, To have somebody, anybody, “get” you is gigantic in magnitude.  And I get her. 

 

I’ve never loved anyone as deeply or healthy as her and the _______.  Nothing ever has and, by now, I believe nothing ever could tear us apart. 

 

She is the ying to my yang, and I hope I am hers.  I know that I adore her… I love her… and I like her.  and one of the biggest things I’ve learned in this life of mine at the front is that, in the end, you have to like each other for anything to last.  Like is way more important than adoration or even IMO love.  So to be triply blessed in my personal relationship with Jess is irreplaceable to me. 

 

* 

 

J not only rescued us a year ago when she/they came to keep us  from the nursing home – and stayed to care for us – but she personally rescued me from the devastations of broken heart, loss, and being beaten down to the point that there wasn’t a hell of a lot left to me.  She brought music back in to my life – in fact, to all our lives – and I didn’t even realize until J came and brought music back that my grief had not only taken my music but had taken music away from this system as a whole. 

 

evidently there was NO music in our life for a long time.  I think about a year?  I’m not sure.  with our progressing memory problems from our illness, and the repeated neurologic hits from our illness and anesthesia, I don’t remember a lot of details about most things past – but from what I do remember, I think its probably for the best.    

As a whole Hom is a joy in our life.  They bring laughter, companionship, friendship, acceptance as we are… And I hope with everything in me that we give back to them. 

 

There was a Jewel in my life before Jess, but she has become the true J to me – all red – deep and vibrant – full of life.  I am so blessed. 

 

*

 

I’m getting tired.  our strength level is so low and we have a party later.  so I’m going to cut a corner and copy and paste the words I put to a comment i sent to Hom’s MS a bit ago…

 

You came here a year ago today to live, to take care of us in this end-stage of our life, to literally rescue us from what we were to be told later was almost certain nursing home placement within the next 1-2 months.  Yeah, your life had hit some big snags, but you would have solved those problems.  Yet you chose to leave that life, and came when we needed you.  You are a turly remarkable, selfless person/s.  There are no words.  We can never thank you enough.  Never.

  

In this year, you have worked full-time almost a year now – gaining valuable work experience setting yourself on a road to success – learned to cook, learned how to do family finances, and I hope have gleaned many more positive things out of this experience.  You even have your baby (Lucy the boxer) now. 

 

I hope that we are more blessing than burden to you.  I know that we love you more than we did – and we loved you a lot already after almost ten years of friendship.  You have become part of our family.  You will always be a part of us.  As ____ says, we love you with all the stars in the sky – and all our blood and bones.  *g*  Thank you.

 

So Jess/Hom, thank you for this year.  If our heart’s desire, our wish for you, is granted, this experience of your sacrifice for us will also result in us having made a positive difference in your life.  Much love from us all to you all,

 

D

 

4-1-09 – Drake… hospice

so evidently we now fulfill the criteria for being moved over to hospice.  we’ve been mulling this over for days trying to process it and waiting to find out well to find out

I’m not real clear on it all yet but it doesn’t look like we’re going to  be forced in to hospice at this time even though we now meet the criteria.  like I said though, i’m not really clear on it. 

freaking hospice dude.  its like catapulting us into another stratosphere – one from which there is no return, no portal back.  Maybe we’re just a bunch of stupid kids left here running this show as best we can but I think we thought that maybe just maybe “home health/long-termcare” was well not so final and shit you know?  Like maybe we could possibly pull out of this yet again like we’ve miraculously pulled out several times before when we were told yeah ok this is it for you

when we told _______ , there was a long silence and then she said “yeah but it doesnt really change anything you know.  its just a word’.  trying to be comforting and supportive and pragmatic I know.  but still what a suck ass word.  what a devastating word. what a hopeless ok its over your done just throw innthe fucking towel already word

hospice

sigh