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Tuesday, June 24, 2014

Good Luck With That

You know that voice?  The one that screams, yells, bangs, cries and demands your attention?  The one that insists that you listen to it?  The one that comes any time of the day or night, uninvited and cruelly convincing?  Yeah, that one.  The one you need to tune out.  Right.  Good luck with that.   But so far, I’m winning.  Barely.

What I notice when I hear that voice, the one that tells me in loud whispers “What’s the point?”  “Why bother?” “What does G-d want from me?” is another quieter voice behind it, speaking softly and telling me not to panic, all is well, hang in there and when it’s time, don’t be afraid.  I wish that were the louder voice, but that’s not the way it works, I guess.  Truth be told, if you practice listening to the quieter one, it sometimes flip flops and does become the louder one.  But I never know whether or not to trust it.  Could be a trap (LOL).

Looking in the mirror scares me, as does looking anywhere on my body.  I think about people with skin that is smooth and blemish free, people who freak out at little moles and bumps and I have to laugh.  I mean, I know skin cancer is a great fear for people, as is melanoma, but with all my lumps and bumps and moles and lesions I just can’t even think about it.  I wrote about that in “One Square Inch” but now, it’s like one square millimeter.   They grow, and they grow and they grow.  Like the dandelions I used to pull up by the roots when I was a kid.  Maybe there was a part of my trying to yank the tumors out of my body.  When I wrote “Bumps of Beauty” I was more hopeful, more positive, less riddled.  Trying to keep my own words fresh in my mind is not an easy task.

The tumors in my head give me unreal headaches, mostly due to lying flat and my head resting on a pillow.   But I need to lay flat because of the tumors on my legs and spine.  I used to be able to balance a plate of food on my leg and eat half sitting up but I can’t have a plate (or a book) on my leg anymore.

I live in Washington State, which, along with the state of Oregon, has a death with dignity law.  However, it only applies to people who are in fact, dying.  And one must be signed off with a bunch of doctors and have a long checklist of things they must meet in order to qualify.  Someone like me, who lives her life in agony most days, does not qualify.  I could live like I have been (for the past 10 years) in a continuing downward spiral of pain without death.  Torture with non-effective pain management.  From my screaming meanie point of view, it’s outrageous.  From my reasonable view, I get it.  Where is the cut-off point?  Many people can accept that if someone has a knowable expiration date, it would be okay to end one’s own life (apart from religious viewpoints). 

 If the powers that be make an exception for people like me, who is next?   Someone, perhaps, with bipolar disease who doesn’t want to live in the grey world of medication but cannot live in the topsy turvy world of being bipolar?  How about someone with severe depression that medication doesn’t help, who has lived institutionalized most of their lives?  Or how about a convict with no hope of getting out?  The list goes on.  It’s a slippery slope, but I’m sliding down it all on my own.   And whose business is it anyway?


One of the main reasons I have not given into it is fear of doing it wrong and ending up worse off.  And also, believing, right or wrong, that if I don’t live my life all the way to its natural end, I will be destined to repeat it.  No. Thank. You.

Monday, June 23, 2014

Lifted

I have a friend whose daughter has NF.  Don’t want to mention her by name, but she knows who she is when she reads this.   I just got an email from her, in response to one I sent to her, thanking her for another in a long list of gifts she has sent me over the years.  He words never cease to amaze me.  They always stir up feelings of peace, along with many questions.  They always lift me in ways that I can’t quite explain, cheering me on to a life filled with meaning, instead of despair.

I am always surprised when I find myself looking in the face of another birthday, as I am today, June 23rd.    It’s always been a very mixed blessing for me; mostly, I have hated birthdays because they represent another year without much to show for it.  Besides how I deal with my pain and my living situation.  I have made peace with living sans cat.  Surprisingly, it wasn’t very difficult.  I think the lack of stress around caring for my pets; worrying about what will happen to them when I pass, the cost  of keeping it healthy, feeding, cleaning after it (my helpers don’t help with the pet, except to clean the area around the litter box….I clean out the box) has made it tolerable.  I miss all the good stuff about loving an animal but if you can’t take the bad with the good, you shouldn’t have one.

I prayed last night that I would have a tolerable day because people are stopping by for my birthday.   I woke up in horrible pain and it hasn’t abated.  Not that my body knows the difference between my birthday and every other day of the week.
I will do everything I can to be cheerful today and welcoming to those who drop by.  My friend Anne came by last night with gifts, food and what was to be a movie….but I couldn’t get Netflix to work.  It happens all the time on my television….Comcast makes Netflix hard to work, apparently.   Anyway, she is such a dear friend and I love her so much for spending all the time she does with me.


I’m going back to my book now.  The Goldfinch.  Getting incredible reviews and it is interesting but I think it’s getting more praise then is deserved, frankly.

Sunday, June 15, 2014

After The Last Time


The Last Time

I slept like the dead last night but for some reason, today I am flying off the walls, stress wise.  I guess it’s because I’m going to visit my dad and I’m a bit worried about it for his sake as well as mine.   I haven’t seen him in months and I know there have been a lot of changes and I must prepare myself for them mentally and emotionally, which is never easy. 

A friend of mine was planning on visiting him on Saturday but he told her not to come and to please make it another day.  I know it’s because he’s worried about our visit; and I’m worried that he thinks I should have made the effort a long time ago.  He probably doesn’t think that, but my mind goes wandering off by itself in the darkest corners of the Universe and I pad along without question, idiot that I can be.  Okay, this post gets better, I promise.  LOL.  I just re-read what I wrote and I had written “bitter” not better.

I want to be there to support my dad with whatever his wishes are; and I know he wants to die.  He’s in pain, exhausted, tired of fighting and tired of living.  I know the feeling.  I have given him permission to let go a million times but he needs to see me in person and as a good friend of mine wrote to me (when I told her I was going) “It’s the right thing to do” Of course, I start thinking she has wanted to say that to me for a long time and that I’m not a very good daughter for not trying.  Again, those dark, cobwebbed corners call me to berate me and I listen keenly, right or wrong, crazy or sane.  Sigh.

The thing is, after helping my mom cross, I feel it’s the right thing to do for one who suffers.  Maybe that’s what my friend meant, knowing I had helped my mom. I need someone to do that for me, though no one thinks it’s time yet. No one but me, that is.  But I’m the only one who can say (besides of course, G-d).   And what does G-d think about me, if He thinks about me at all?  I was watching a couple episodes of “Saving Grace” about this out-of-control (but employed as a cop) woman who an angel tries to save.  I like those kinds of shows for some reason.  But I’m still very conflicted about what my life means, in the grand scheme of things.  Probably not much.   I think back to my early years and all the physical challenges I’ve always had and how title I’ve done with what I do have.  They say it’s never too late but given my level of pain/function, I’m not sure that’s true.

The hardest part for me is letting go of whether or not I’m believed.  Who cares? I know but still….I think I’m being judged all the time by those around me.  Because the only way I can function is to take myself out of my body and I do it so well, people often see me functioning at a level that confuses them.  It’s not a high level by any means.

But I can walk (with aid) and I can shop (on rare occasions) and I can fix my meals (with trouble) and take care of my personal needs (with caution) so long as I keep hearing the “take it slow” voice.

After the Last Time

You know how you have a thought and then lose it in almost the same instance?  Like trying to chase a dream that’s dissipating like a reflection in rippled water?  Just gone.  Well I have those thoughts all the time.  And I was thinking of my visit with my father on the long drive home (which Fran and Jeff and Ben made incredibly comfortably for me so it wasn’t bad at all…especially because I was also quite drugged.  Nothing beyond what’s recommended but more than I usually I allow myself due to side effects) about how we never know when the last time we see someone or do something, that it will be the last time that event happens.  Ever.  Due to many unknown factors like death, moving, the closing of a particular store/restaurant or the end of a friendship or marriage.  It doesn’t matter.  What matters, is that we are totally unaware when it happens, THAT it has happened.  Not until you happen to remember that experience or person and say to someone else “Who was that again?”  “What was the name of that place?” “Remember how we used to go to that one restaurant, what was the name of that again?”

It’s an interesting experience if you think about it.  It was the last time you did that particular thing, but had no knowledge ahead of time that it would be.   The last time.   What would you have done differently, if anything, if you had known?  Maybe nothing.  Maybe you wouldn’t believe that would happen.  Maybe you would just shrug and say “on to the next” and laugh.

Getting older gives you no prior knowledge of what is to come.  Not in big, flashy lights at any rate.  But if you listen, you can hear those wise voices I am always going on about, the ones that speak softly but carry a very big stick.  They are wise, wonderful, supportive and carrying.  They don’t always give us the answers we want, but they do answer.  You just need to listen, to be open, and to know that you are not your body.  You aging (yes, even the young among us), sometimes challenging, sometimes acceptable (in our minds) but always perfect no matter what body.   Give thanks for it.  Even on, maybe especially, on those days we want to chop all our limbs and scream at the stars for the pain that we live with.

And then remember everyone is some kind of pain; so many, so much worse.  The pain of families being torn apart in war, hunger, massacres, “random” shootings by schoolchildren or psychotics (well, are they anything else?) the craziness of our world and all those who reside in it…..sorry, don’t mean to ramble…I’m just so grateful for my day with my dad, sharing memories, making new ones.


Happy Father’s Day

Monday, June 9, 2014

A Visit

My brother and sister in law were here Friday and we made a plan to get me to see my dad…on Father’s Day.  I pray that I am up to it because as you know, it’s been torture.  But so is not seeing him.  And his health has gone downhill so fast I fear he may not make it another week.  It’s a gut-retching feeling and one filled with guilt for not trying harder, sooner.  Part of me is just so scared of the pain being even worse than it is.  That’s what has kept me from doing it sooner.  Still.  He’s not eating, very thin, rarely getting out of bed, hospice care (though not at night which worries me.  He is checked on three times a day).  I want to follow him home, like I did when I was a little girl.

So they will pack me up in their car on Sunday, we'll stop and rest at their home (which I have never been too...and it's been over a year since they moved in) and then go to see him.  I was going to surprise him but decided telling him might give him a lift.  I think it upset him because he wants to let go and now he is going to force himself as much as possible, to hang in there.

I’m not eating much myself.  No appetite.  Too much pain.  GI problems galore.   I feel like my brain has to work constantly to keep me from going over the edge from the pain.  And the edge is looking better, getting closer.  Especially since I am now pet-free, the first time in 40 years and glad of it.  I keep waiting to want another, but I don’t.  I know it would be too hard on me physically and emotionally.  And it would be selfish.

I spoke with my dad today, as always, and he sounds weaker all the time.   When I told him I was coming for Father’s Day, he asked me if I could come sooner.  Then he apologized for saying it.  I told him there was nothing to apologize for and that if he had to let go before Sunday, I would understand.  I just want you to have what you want, I said.  Sadly, he and I want the same thing.  I just pray I can get there before he passes so that maybe I can help him transition, like I did with my mother 15 years ago.  I sometimes struggle with that, thinking I “killed her” but of course, that’s nuts.  To some extent, people wait to get permission before passing on.  I’ve seen it happen to many times to not believe it.


Boy, I really bounce, don’t I?  Stephen Hawking one day, G-d the next.

Tuesday, June 3, 2014

Feuding With Faith

Stay with me on this, I vacillate a lot.

My trust and belief in G-d is at an all-time low, skepticism taking the place of faith.  Not just because of my own horrific, endless, intractable, indescribable, take-my-breath-away pain.  But because of my dad’s horrific, endless, intractable, indescribable take-his- breath-away pain.  He expressed doubt about G-d to me yesterday; the first time ever in the 60 years I’ve been alive.  He has hospice care now, but my brother just doesn’t get it about managing his pain.  He keeps telling me they are “doing everything” possible.  But until you have had ONE BREATH of this life, there is no way in hell to understand it.  Just like I don’t understand about living in a war-torn region or experiencing any of the other horrors that ravage this planet, this life.  Nothing helps.  Nothing.  No breaks longer than 15 minutes, tops, and only then if I’m distracted by something (like reading the horrible news of the day) though it’s harder to distract myself because the pain is so all consuming.  Maybe I shouldn’t be so graphic but hey, the truth is the truth, and this is mine.   I’m not good at pretending right now.

I can’t imagine being further punished if I choose to end my life myself but then again, why this pain now?  Without a body, I would hopefully be out of pain.  That’s what everyone says, eh?  “At least he/she isn’t in pain anymore” Right.  Like “they” know.  No one knows nothin’, honey.  I’m leaning more and more toward Stephen Hawking’s way of thinking, who I mention in several of my posts.   I just want to take every single pill in my arsenal and go to sleep.  But I am terrified I’ll do it wrong and end up WORSE if that’s possible, so I wait.  

My dad.  We are so close, something we weren’t when I was younger.  But we are now.  Now he gets it big time.  And for that, I am dreadfully, painfully (no pun intended) sorry.  Not sorry that we are close; for that I am grateful.  His pain makes my pain worse.  And like everything else in life, you often have to personally experience something to fully understand it.  And before his health hit the fan, before his spinal stenosis, he grew impatient with me, thinking I could “do something” to earn a living.  I did for many years, but had to stop at about 40.

It’s my dad’s agony that tears me apart, limb by limb.  And I have to look for signs that G-d hears my pleas for help (for him).   And in the midst of this breakdown of my spirit, I started thinking of my paternal grandmother, Ida, whom I have written about on this blog and who has been with me in spirit since I was 22.  She died when I was 11 (and told me never to fear death) and had left me one of her diamonds from her ring to be given to me when I was 16.  My parents had it made into a pendant, and I wore it nonstop until I was 22, when it was stolen out of a hospital dressing room (I had taken it off for an X-ray).  I cried my eyes out for hours, and suddenly heard her quite clearly in my head (as a thought, not a voice) saying “you don’t need the necklace to have me near you” It jarred me out of my psychic pain and I have felt her near me ever since.

Last night I thought of her and I said “Your boy needs help”.   I don’t know why those particular words came from my head but they did.  So I told her how much pain he was in and how much help he needs and to please help if you can.  Well I spoke to my dad this morning and he told me my brother and his whole family stopped by last night for a visit.  “That gave me a lift” he said.  I told him I was glad to hear it.  It wasn’t until I hung up that I remembered my request.  Would they have shown up anyway?  Probably.  But I like to think my thoughts carried to G-d, who carried it to my brother…all on the wings of that butterfly.


And then the pain comes and everything I thought previously seems ridiculous.
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