One Year Ago Today

It was a year ago today that I had to put Oliver down.  It still feels like yesterday.  I still miss him terribly sometimes. He used to sit on top of the couch looking over my shoulder while I read.  He comforted me when I was having a really bad pain day, slept with me with a paw over my arm, and licked away my tears (usually if there was a smudge of food on my cheek).

I cannot believe how fast time wizzes by.  Faster and faster, it seems.  I still see you, Oliver.  I still feel you and think about you and wonder how you are doing, wherever you are.  As it is with my human friends and family, it’s hard to believe there is now just nothing left.

Sir Oliver

Who By Fire

I've been bad about writing for a long time.   I want to post positive, upbeat things to encourage those with the challenge of chronic, intractable pain that cannot be controlled.   I've got a surgery scheduled for the end of January and I'm terrified it won't make any difference.   NF is ruthless, unforgiving and beyond challenging.   I struggle constantly to make sense of it; whether or not there is a G-d or if everything is just random good or bad luck.   Anyway, I've been working on this stream of consciousness poem (it was stream of consciousness but I tweaked it) below:

The day will come when lights are low and all I’m breathing in will go

Then to this world I’ll bid goodbye and hope you know I did, I tried

I fought like mad against the pain that seared right through, all grip all gain

I’ve often left it through my mind in search of comfort hard to find

Precious pain-free moments heaven, pain dips down from 10 to 7

Music, oils and meditation, seeking comfort, speculation

Surgery is my last hope to find relief whatever scope

If that bid fails no option’s left, I do not meet the standards set

for helping those in mortal pain but no “by when” date, what a shame

A life of pain with no conclusions, no longer clutching doped delusions

of hope that pain will end in time, to have a life out of this bind

I know they have to draw the line on who to help but what a crime

Left alone to make a choice, take the action, use my voice

But “what if’s” haunt as much as pain, the list is long as is the strain

of questioning why I’m here, is there a G-d and is He near?

Or was my birth and shattered gene, just a crapshoot, not foreseen?

If that’s the case why wait around just pack my bags and leave this town

But if there is some truth to learn, then patiently I’ll wait my turn?

and live in torturous, intractable pain, it’s hard to believe this was ordained

One thing is true, for this I pray, to not return to Earth one day

And when it’s time and lights are low, all my breathing in will go

Something

I have been going through something lately.  What it is, I do not know but it’s taking me places I’ve not been when lucid, or even when I’m journeying  or dreaming.   It’s like being surrounded with a quiet acceptance.  Maybe because the pain has been so outrageous, so uncontrollable that there is nothing left to do but surrender.  Maybe it’s the first step to the next level.   The level with courage.  Courage to honor my wishes and be at peace with whatever decisions I make regarding my health.  The upcoming surgery on my leg feels hopeful.  But if provides little or no relief (plus my other leg is just as bad though the tumors haven’t “appeared” yet) that leaves me with the same two options I have now.  Do I stay or do I go?   I don’t take that choice lightly.  But nothing except the endless pain that has kept me housebound for too many years to think about seems unimaginable.  And yet, there are many things for which I am grateful and thankful for.  That still isn’t lost on me.  So can’t I have both?  Thankful for the good things and unable to withstand the pain much longer.   I could still leave with joy, it need not be despair.  If I chose to be grateful and happy for all I have, I can leave with a smile.

I am not near that landmark.   Just thinking it.

And I’m in quite a bit of “pain right now.  It’s Thanksgiving, and I do give thanks for everything that I have; I have a roof over my head, food, medicine, family and friends.  My NF friends are very important to me. 

And I am going to be a part of an NF project that is supposed to teach me skills on coping.  I already to a lot, but I’m interested in hearing what they have to offer, ready to offer what I have to them.  If they are interested. 

My niece is coming over tomorrow with leftover turkey and pie, etc.  That will be nice.  Today, I’m alone with my thoughts, my Netflix, the horrible news (which I’m trying to avoid) and whatever else I can find to help me cope.  In the meantime, my sister got me hooked on “The Walking Dead” of all things.  Aside from the zombie scenes, it’s really interesting in terms of coping…thankfully, I don’t have to endure what the characters are enduring LOL.  Kind of “Lord of the Flies” like.  

My Gosh

My gosh it’s been a long time since I posted.   I think I’m feeling sad that I haven’t done enough to promote my blog so others with pain related issues will see it.  Not that I’m a great writer; just so they won’t feel so alone, like I do much of the time.

I’ve had a UTI recently and it hasn’t cleared up so my doc was supposed to call in a script yesterday but the pharmacy said they never got it and now I’m waiting for someone on call to call back but they won’t fix it on a weekend.  I’m going to call them back (they said give it 30 minutes and It’s already more than that) and tell them if I have a bladder/kidney related emergency this weekend because I didn’t get the script, they’ll see me coming LOL.   Actually, there were crystals in my urine.  I know it’s bad for a cat, but my doc said it wasn’t “necessarily” bad for me (I didn’t mention cats).  But it could be a kidney thing.

So. Surgery.  It is scheduled for the end of January and I got all the questions I had answered and I have a pre op date but I’m still a little bit on the fence.  Not as much as before.  The pain has been so outrageous I just want to hang on to the olive branch the doc is offering….even a 20% decrease in the pain (20 to 80 is the averages) would be welcomed.  But I can feel them growing in my other leg too and the pain is getting bad there.  We shall see.

Other than that, I am spent.  I had an outrageous dream the other night.  In it, I was sitting behind the wheel of a car at a stop sign.   Suddenly, the passenger door opened and some strange man I’d never seen came in with a gun and held it to my head.  And in the dream, I had the clear thought “This is what you said you wanted.  This is what it looks like” (Death).  But instead, I took his face in my hands, looked him in the eye, and said “I’m sorry you had such a hard life”  He looked at me, exited the car, and as I sighed with relief he shot himself in the head.  The last thing I recall were police and paramedics everywhere.  Then I woke up.  Reminded me of that show “Medium”

The doc just called.  But I have no one to pick it up and they don’t deliver on the weekend.  Maybe they’ll make an exception since I’m so uncomfortable.

Mind/Body

I have written a bit about how pain and suffering don't necessarily go hand in hand.  In fact, they are two different things all together in my experience.   This is an interesting article that although doesn't specifically mention pain and suffering, does show the mind/body connection.  Great read.  And I don't minimize the pain...far from it.  But I also practice ways to make it less painful, and if I really pay attention to my intention, it works.  The drumming, the meditation, the acupuncture, essential oils (but most of all the shamanic journeying by listening to drumming)....anything to get me out of my head!!


http://www.nytimes.com/2014/10/26/magazine/what-if-age-is-nothing-but-a-mind-set.html?_r=0

Appreciation

That book I’ve been reading “Beyond the Ashes” continues to amaze.  One of the things the author discusses is “Survival through one’s Descendants” and how (in its teachings) if you don’t have a descendant, you die both literally and spiritually.  This is considered a “bad” thing, a liking to spiritual suicide.   But I chose not to have kids because of my NF, and although I know it’s a book on spirituality and should not be taken literally, it got a smile out of me.  I do not want to come back, as I’ve stated again and again.  And again.  LOL.  Each to his own, I guess.

Anyway, it occurred to me that perhaps the reason I am experiencing such spikes in pain and such feelings of ending my life or just praying that it be so, that those feelings are profoundly ungrateful for the life that I DO have.  And there is plenty to be grateful for.  So I’m working on that.  All the time.  And the amazing thing?  The MINUTE that thought popped into my head, the pain seemed to drain a bit.  I actually felt my legs letting go of the pain.  I must keep working at it, of course, but it’s just one more tool in my toolbox of ways to survive.  An attitude of gratitude is hard to maintain sometimes, especially when the pain is off the flow chart.

At any rate, I am thankful for the following (no particular order; just as they pop in my head) and whether or not I still have/can do them:

A roof over my head, food in my belly (when I eat), access to medication, friends, family, heat in the winter, disability benefits, people to help me during the week, Internet access, books from the library, my blog, people I’ve met online who also deal with pain, people online who have NF, having had my dad for 61 years (my lifetime…he lived to 90) having had the chance to mend my relationship with him years ago, my helpers on the other side who have been surrounding me with a lot of love since my dad died (and who are always there when I call for them), having access to a healer/acupuncturist who has made my life a lot easier, a wonderful therapist, a beautiful view out my window and balcony, hummingbirds who I watch enjoy the sugar water I make for them,  I’m thankful for the stars in the sky (even though I no longer see them…I know they are there), the sun, the plants and animals (which I can no longer have, but love dearly), dark chocolate, books, books and more books, a good spooky movie, a good comedy, all the places I was able to visit before my illness took over, the wild times I had back then, the men I loved, the ones who may have even loved me, the wonderful people who have stood by me all this time, my ears, my ears, my legs that can still walk in spite of the pain and the numbness, hands and fingers which still work, though not as well but hey, they work, ginger cookies, shortbread cookie with chocolate on top, funny stories told by friends around good food, same for family, looking up and suddenly seen something surprising….like soap bubbles floating up from somewhere secret, my laptop which gives me access to the world, smells I can still smell and enjoy, sights I see through photographs, old photographs of my extended family especially in black and white, hand-holding, back washing, swing-sets and monkey bars, ice-cream, sour candy, jig-saw puzzles, Halloween, prayers of thanks, any/all prayers, faith, emails and surprise visits from family and friends, essential oils, ordering things online so I don’t have to go anywhere to get it, pharmacy delivery (new!!!),  snowcapped mountains, thunderstorms, rainbows, honey crisp apples, an appetite, flying dreams (and others), singing to myself, songs from the 50’s and 60’s, my mother singing 50’s songs to me when I was a kid, eyelash kisses, dark chocolate ice cream bars, National Geographic photos, catching the anger before the outburst (and stopping it), leftovers, ripe pomegranates, cupcakes with buttercream frosting,  cherry lollipops, cats and dogs, eaglets and eagles, actually, all animals on the planet, all the wonders of the world (including reproduction of all species), rare days of being pain-free, videos of animals, hearing about the travel of friends, getting in touch with my higher self and being able to reduce my own pain, my spirit guides, G-d, G-d and G-d….my list will continue, though not here.   I urge you to make your own!

Surgeon

I saw the surgeon I’ve been waiting to see today.  He was running two hours behind but I was lying in the exam room so it wasn’t that bad….usual pain levels.  And he asked pain questions no one has ever asked me.  Like do I curl up in a ball, do I cry, etc.   I thought those were important questions.  He also has had many NF patients and I saw two in the waiting room so I know that’s accurate.  And a nurse and another doc talked to me as well, assuring me he is good and knows about NF.  Whew.

So he felt the tumors on my left leg, left side of my neck and left wrist.  He said he can get them all out (felt them and said they were near the surface) but he’s a busy guy and it will be a few months. It will be about a two and a half hour surgery.  He said recovery varies, and my sister was with me taking notes and asking questions, worried that I live alone and how hard would it be? Gotta love her!!!

I have mixed feelings….I want to do it, absolutely, but I am worried about recovery as well.  Stay tuned.

Changes

I still feel you all around me; counseling, loving, sharing sage wisdom learned in the World to Come.  I am in increased pain and my left ear has started to bother me relentlessly.  Before, it would come and go.  Now it has planted roots, like the rest of the tumors.  I feel helpless to the invasion and when I let it, I worry about that which is not in my control. But what I seldom feel anymore is fear.  I am taken at how much at peace I feel through the pain.  Am I truly surrendering?  And is surrendering the same as giving up?  Throwing in the towel, as it were?

More and more: memories are starting to surface.  Things done several years ago; like being able to go out for a bite to eat with family, or memories from many years ago, with friend whom I don’t even know are a live anymore.  They come in flashes with a sign that reads “don’t forget this or that”   I won’t. I promise.  I miss it.  I miss it all.  I still wonder where old loves turned up.  Like Michael Neal, whom I never managed to find.  But his name is common.  And I doubt I ever crossed his mind in the 30 (gasp) years since I saw him leave town with a pregnant girlfriend he neglected to tell he had.  We were young.  He was truly confused.  And much to my chagrin, I actually liked Joy.   He knew I was sick and he was perhaps the ONLY man I had met where it didn’t seem to matter to him.  And poof, he was gone.

What would I have done differently if I could have a do over?  I’d be braver. I’d push through the learning disabilities, the physical challenges and romantic shutdown.  I do believe I reincarnated too damn soon after the Holocaust; and yes, I’ve had a spontaneous past life experience of dying the gas chamber.  Completely spontaneous; no recent thoughts of the Holocaust.  And two other past life experiences not related to it.   But those were much earlier. This was the forties, early fifties.  That world always had a draw on me.

Oh, and I’m working hard on appreciation.   I’m keeping a list of things that I’m grateful for.  It’s long, and continuing to grow.  I seem to be able to tolerate the pain better when doing this.  Huh.

Reincarnation

I’ve had at least three spontaneous experiences which may or may not have been “past life” memories.  I’ve written about them on this blog.  So every once in a while I pick up a book about the subject and try to tackle it again.  Right now I’m reading “Beyond the Ashes” which is an accounting (in part) about people, mostly non-Jewish, who have had unexplainable memories of the Holocaust.  Not the kind of things everyone knows about from books and movies, but very specific and verifiable experiences which are hard to explain.  I myself had one that scared the pants off of me but sealed it away for years before I talked about it.

At any rate, I bring it up because I have been tackling the idea that we keep incarnating the same kind of problems over and over again (especially if we don’t resolve them).  One thought about the Holocaust reincarnates is that they came back too soon (a therapist told me that years ago and it felt accurate), before the soul had a chance to let go of what they just went through in their most recent life; especially because the life was one of such horrific challenge.  The world today ALMOST pales the Holocaust; and what was done to people (not just Jews; Gypsy’s, homosexuals, etc.) in the way of torture is beyond imagining.

                                                                                                                               .

So I’m thinking, if I was in fact killed in the Holocaust, I sure feel like I came back way,, way too fast (which is discussed in the book) and that that might account (in part) for my anger of being here now and my dread of possibly having to come back again after my death this time,   And then there’s the fear of how much longer I end up living in pain and fear of how bad it’s going to get before I’m done.  Whew.  Take a pill, right?  And what if I can’t hack it anymore?  Will I be punished and forced to do a do over? 

Anyway, I started to think I brought NF (or my soul chose it) in with me because I haven’t reconciled all the pain and torture I endured.   Crazy?  Maybe.   But we don’t know what we don’t know; we just cling to our ideology because we are so desperate to make sense of the senseless.  I have a lot of time to ponder these questions.  They aren’t meant to be morose.  I just like to untangle the knots in life’s tapestry.  It helps.

What You Resist, Persists

Forgive the anger, frustration and sadness of this one, please.  I thought long and hard about actually posting it, but in the end (and again) I want others with pain issues to remember they are not alone with these feelings.  I am here, and so are many others.  I didn’t mean for that to sound like a know-it-all.  In fact, I feel quite the opposite.

A quick warning for those of you on an anti-depressant:  I was taking less than prescribed because it increased my blood pressure.  But my BP is low anyway.  I realized this morning that not taking what they prescribed probably has a lot to do with my recent feelings and inability to cope well with the loss of my dad on top of my pain.   So I am now on the right amount.  We shall see!

I’m having a hard time letting go anger about my pain, about my life’s limitations and about all I’ve lost.  I feel shame at not being stronger, less complaining, less angry.  I try, but between the physical pain and my GI problems, I no longer have the energy to fight it the way I have been.  Fighting, resisting, doing everything but accepting it.  And I know that my solution to my problems, the fighting, is the problem.  I tell myself to surrender, but the pain is so intense sometimes surrendering is the last thing that comes to mind, even with reminders taped to my walls which read simply “Surrender”.  Surrender to the pain!?  Not a chance!  I want to fight it…I want to win.  But I lose every time I try and fight it.  Emotionally, physically, spiritually.  I’m on some obscene carousal ride for which I can’t exit.  All the horses and seats are scary, dark twisted images. I know there is a lesson in this.

I do believe all the people I loved dearly who are departed watch over me.  I believe that praying for death isn’t the answer.  And I know that’s not what surrenders means.  The conundrum, is that when it gets this bad, I’m not sure there is anyone, G-d or otherwise, to surrender to.  So I’m left with surrendering to the pain, which feels like quitting.  Stupid, eh?  What’s that saying?  The definition of sanity?  Doing the same thing over and over and expecting different results.  So I guess on top of everything else, I’m insane.  Good to know.

I know it saddens those who have loved me, alive and dead, that I am going through this hell with no foreseeable end.  I feel like a wuss complaining about it… I feel like I have to put on a happy face no matter what, because otherwise, I am not brave.  I don’t feel like that’s what everyone expects of me; it’s what I expect from myself.

Whenever someone I know passes, I am insanely jealous of them.  Pathetic.  The loss of my father has definitely exasperated the pain and GI issues.  Not talking to him every day hurts as much as my physical pain sometimes.   And even when I do manage to distract myself for a short while, it comes back with a vengeance.  It’s on a mission of misery and I am now at a loss about how to cope.  It crops up unexpectedly, just like they tell you.  I’ll read about a book or movie and think “I’ve got to tell dad about this one.”   It only takes a second to remember, and then the sadness and pain come roaring back like the planes from the Boeing plant that’s nearby.  So yeah, that has added to the pain.  Part of the reason I am keen on shaking it off is because it would hurt my dad to know this.  It’s so confusing.  I think like that one second, and the next second, I think, “don’t be stupid; dead is dead” I’m hopeless.

So what is the answer?  Meditating, essential oils, medication?  They sometimes work for a while.  But really, little distracts me long enough to get relief with the exception of a few hours a week, if I’m lucky.  And I give thanks for those hours the whole time I experience them.  I feel as though I am coming unhinged, untethered and scared beyond measure that this will last unabated into an endless future.  The panic attacks grab hold and choke me if I don’t make peace with the demons.

I can only surrender for a few minutes at a time.  If that.  But in those few seconds, I get a peek at what it would be like to not have pain.  Increasing my anti-depressants will hopefully, help.

Witness

My brother and his wife Fran were here yesterday and since I haven’t seen her since before my dad died, we all talked quite a bit about how he passed.  I know he made the conscious decision that it was time, but what I didn’t know was how he sort of “reported” back every time he came out of the pain medication stupor.   Fran was trying to come up with a word for it and I said it sounded like he witnessed it.  She said “yes!  That’s what it was…he was witnessing it”

That is how I want to go.  I’ve always said I want to see it coming, and I do (so long as it’s a natural death).  I want to be happy about it (as he was), ready for it (as he was) and not angry or troubled by what I have gone through (as he seemed to be).  It is amazing to me that he was able to do that; perhaps it was the drugs for which they finally gave him enough.   I’m still saddened that the last couple years of his life were painful, confusing ones.  I’ve had years to process my condition; it’s been a slow, steady (though sometimes faster than others) march into more and more pain; my dad’s as a fast plunge.  And he was 87 when it started; 90 when it ended. 

I think being able to sit back and watch what was your life go by, while also being able to see what’s ahead (he could) would be a fabulous farewell!  Letting go of the fear, the anger, unfulfilled wishes, unreached goals, self-degradation, helplessness, unfairness and all other negative human qualities we cling to like a baby with a pacifier; because a pacifier is exactly what those emotions are.  Self-pity.  We think we deserve more, need more, want more…and when we get it, it’s never enough.  And it doesn’t have to be things.  It can be a twisted definition of love (which is why it’s not fulfilling) or shame at not finishing college, not having children, having children or any number of a million other things we think has rendered our lives meaningless.  How sad.  I see myself in this picture often.

I really think when I reach a place where I am ready to REALLY let go of all those things, and not just in a momentary acceptance of letting go that feels like a soft, warm wind and lets me surrender completely, I will be able to do it.   They dying part might still take a long time, but if I am really in acceptance mode the whole time, it won’t matter.  Being in acceptance while being in the kind of pain I’m in will be the challenging part.  And it isn’t letting up.  Not one little bit. I’m so very tired.  At least once or twice a week I’m on my knees begging for release from the pain.  One way or another.  It helps to have so many loved ones on the other side.

Virtually Lucid

Okay, this may seem like a weird post but I’ve been thinking about this stuff a lot, lately.   I think about it a lot anyway, but more so lately.  In the end, this is about the tricks I use to (when it works) help keep the pain away

I had my first lucid dream when I was about six years old.  I’ve only had about five or six in my life that I recall.  And they all happened before I started taking medication of any kind.  During this period of my life (before the age of about 35) I didn’t take much more than the occasional aspirin.   For those of you who aren’t familiar with lucid dreaming, it’s when you become aware that you’re dreaming and you can choose the direction of the dream.  The problem is, the experience is so exciting you often wake yourself up; so you need to take care to remain calm while still enjoying the action.  It’s almost like virtual reality.  

Lucid dreaming can be self-taught, and it’s worth it.  Imagine going places and doing things that in reality will never likely happen.   Flying dreams usually precede lucid dreaming; so if you dream you are flying, chances are good you will slip into lucid dreaming.  But how can you train yourself to dream those kinds of dreams?  There are a number of ways, and I forgot most though there are good books out on the subject.  However, the best way I have found was this:  No one questions their consciousness while awake (unless you have a mental health challenge…but not always then, of course) because what’s the point?  You know you are awake unless trauma has occurred, then sometimes, no, you don’t.  But try this sometime.  Question your consciousness during the day.  Ask yourself “Am I awake or dreaming?”  The reason for doing this is because if you do it a few times a day for a few weeks, eventually, you may start to question consciousness while you are sleeping and when that happens, the act of questioning it can throw you in a lucid dream.  Then watch out, because you will be in the ride of your life.  But be careful; too much excitement will wake you!

The thing about being lucid when I am sleeping is for me, also about keeping my conscious self out of my pain-ridden body while awake.  It’s not easy sometimes, and when I do manage to leave my body for a precious few minutes, I am most grateful.   So it’s about being able to control consciousness whether awake or asleep.  Like meditation.   Sometimes I try to tell myself that if I work on it, I can train my body to interpret the pain as pleasure.  That would be a good trick.  I think the best I can do is leave my body for short periods of time. 

Maybe I could travel the world that way.   There are plenty of pictures on the Internet so trying to imagine a city, a jungle, the ocean…shouldn’t be difficult.  Hold the image.  Fly away.  Or, I could get a virtual reality device.  I don’t know why those aren’t readily available by now.  Fly, fly, away.

Absolutely Still

A pool of water doesn’t reflect unless it’s absolutely still  

Unknown

Something I need to keep in mind.  I heard it today and thought I’d add it to balance my pity potty post.

It is becoming increasingly difficult to continue this journey.  The pain is understandably incomprehensible to those not familiar with chronic, intractable pain; even me most of the time, and nothing suppresses it. I just can’t wrap my mind around that,  And I really can’t imagine this pain and lack of management  continuing far into the future.   It’s so frustrating to keep hearing “your tumors are stable” after an MRI.   The pain rarely shows any mercy and I’ve been getting more and more dizzy spells.  And as I explained in the last post, the pain can increase without the tumors increasing.  I am far from stable.  Physically, emotionally, spiritually…far, far from stable. 

But shortly after sitting down to write this, I actually caught a break for a few hours and even left the house.  I am grateful for the break, trust me.  I feel small and petty when I complain that a few hours a month isn’t enough.

I felt withdrawal symptoms Saturday; it happens every once in a while.  And I have a new patch on and I took some back up morphine.  My chest is an angry red rash….maybe from the patches, maybe from one of the essential oils.  Or maybe just the tumors which riddle my chest (and everywhere else). Who knows?  I’m not sure I care.  But I talked to my pain doc’s nurse and she suggested I change the brand so I called the pharmacy and requested they do that.

I have this fear is that if I take matters into my own hands regarding ending my life I will be forced to come back to Earth and repeat another physically challenging life.  That scares the beans out of me.  I drive myself crazy thinking about the existence of G-d, telling myself that not so long ago people though the Earth was flat, then they thought it was the center of the Universe and when it was proven otherwise, people were burned at the stake or locked away in an asylum for speaking that truth.  So are we clinging to one last fantasy?  The one that has been drilled into our heads since who knows when?  Letting go of it doesn’t seem possible or even imaginable for some, me included though I give it a lot of thought.

I’ve had a lot of unexplainable things happen in my life, including spontaneous memories about living and dying in the Holocaust.   One major one came out of the blue and was very powerful.  And if that were true, why was I was then thrown into this life of hell almost immediately after?    I am so grateful my father is out of pain.  And I do feel his spirit.  At least I tell myself that’s what I’m feeling. I keep having these “dad moment memories” that make me smile or bring a tear to my eye.  When I was a kid, our house was in front of this large swamp and beyond that, a railroad track.  When my dad came in my room to say goodnight, you could often hear the whistles blowing from the train.  My dad would tell me it was ‘the bad guys leaving town”.

I love watching documentaries on the Cosmos, but I ask myself, once we find the answers to everything, what will become of faith?  Think about it.  For instance, if you were taking a course in something, and you knew every word in every book and every answer to every question prior to taking the class, why take it?   What joy would there be in it if there was nothing to learn?  And what joy would there be in being alive if there were no more energetic arguments?  Of course, no more wars would be nice.  Boiled down, they are always and forever about religion.  Not faith…religion.

Parts of our consciousness survive the body, is what I think.  If matter cannot be created or destroyed, it only makes sense that part of the soul does survive.  And maybe that’s all that is happening after death.  Some part of our being refusing to let go.  Clinging to the life we just left.  Ha!  I assure you, I will not be clinging to this life.

So if the body gives me nothing but pain, what the heck am I still hanging around for?  This is beyond exhausting.   I wish I could figure out a way to get my body to respond to this agony as if it were pleasurable.   I’d be in ecstasy all the time!  Would not need any painkillers…how ironic….addicts take it thinking it will be ecstasy, those of us that need it feel nothing but anguish, something the ecstasy- seekers eventually discover.

My dad didn’t read my blog much when he was alive; he told me it made him sad.  I told him to stop reading it.  But now he probably knows what’s in it.  Sorry dad.  Same advice.  Don’t read it.

MRI Results

I finally got a call from my doctor about the MRI I had 11 days ago.   I am always amazed at the answer, because the symptoms are always worsening.  But he said there was “no major” changes and nothing in the brain in the way of tumors.  But a friend of mine whose daughter has NF and a lot of the same issues I have, told me her daughter's pain doctor told her that even though the tumors might not grow, when they sit on the nerve sheath for years on end they eat away at the sheath itself, thus causing increased pain when the tumors touch the nerve.  Good to know!

It was frustrating because I know I wasn’t in the MRI anywhere near as long as they said I would be so it makes me wonder.  I questioned him about it, asking if he was sure they got it all.  He was.  He also said the ones in my leg may be operable, and a doctor at another clinic (but still with the UWMC) will be calling me to set up an appointment.  Of course, he is not sure whether or not removing the ones that are hurting so bad will actually help with the pain.  My other leg hurts too, but I am not sure they imaged that.

I am exhausted, depressed and still grieving, of course.  And I’m not sure if the news makes me feel better or worse.

I just watched this movie on the life of Stephen Hawking.  Talk about your fighters.  It was amazing and made me feel petty and small about my constant complaints regarding my challenges.  I’m in constant pain, it’s true.  Little helps relieve it, that’s true too.  But I can walk and talk….though driving is coming to an end, I think.  I’m not in a wheelchair, I don’t need nursing care and I can type on my computer.  Still, it’s hard not to gripe.  Something I need to work on.

Do I want to put myself through a surgery that may or may not help with the pain?  I guess I need to talk with the surgeon first.  I’m scared.  I’m always scared.  And living in fear of what might happen is no way to live.

...And Letting Go

I got the call at 1:30 this morning.   No matter how you prepare, they say, you can’t quite believe it when the news comes.  I am writing this 30 minutes after I received the news, as I can’t sleep anymore.  I had already decided yesterday to have the MRI regardless.  My sister had called earlier to tell me it would be “any day” according to the nurse.  I guess Hospice nurses can tell with pretty fair accuracy.

But I prayed and meditated on it yesterday afternoon; I had a bit of a panic attack after my sister told me what the nurse had said.  I calmed myself down a bit, then had this very brief moment when I felt comfort in my father’s spirit.  He would have wanted me to have the dreaded MRI.  I can feel it.  I haven’t stopped feeling it, but that voice that shames you was telling me to cancel it.  It was the wise voice that set the other one free of the shackles it had me in.

I wanted to be there in person to say goodbye, but I didn’t really need that.  I just needed to feel his spirit in me.  And I did.  He gave me so much, he will be missed like crazy, and hopefully I’ll remember his life lessons for however much longer I must endure the shackles of NF.  I must free myself of those as well.

Goodbye, my dear father.  Rest.  The physical pain is done for you (I pray).  You will always be with me.  You did a good job and I will always love you.  And strange as it may seem, the day of my dad's funeral service is September 2; which would have been my parent's 67th wedding anniversary.  funny, that.

Hanging On

My dad is still hanging on, though mostly sleeping or groggy or just out of it.  I haven’t spoken to him in days.  My brother and sister put the phone to his mouth so he could say hi a few days ago, but that hasn’t happened for a while.  They are both burning the candle at both ends, taking care of him and their own lives.

I found alternate transportation to my MRI on Friday.  Well, I’ll take a taxi there but a friend is picking me up.  It’s all I have to offer in way of helping them.  And the pain has been through the roof again, as have my GI issues, which have been tamed for months.  I know it’s nerves and I’m working on that with prayer, meditation and essential oils.  This morning for the first time in over a week, the pain is at about a 6 instead of the 8 or 9 it has been.  I’m praying it stays that way for my MRI.  And of course, I want to cancel the whole thing.  But the purpose was to see if the tumors in my leg are operable. 

I’m trying to take a page from my dad’s book on life.  Keep fighting, kid.  But all I wanted to do for the past few days is give up.  Then my niece came by yesterday for a visit.  She works at Crate and Barrel and I had mentioned all my juice glasses but one had broken and she brought me 4 great little juice glasses.  We talked about life, about her upcoming semester in the South of France, books, her boyfriend and politics.  She’s beautiful, smart and excited about life.  I adore all my nieces and my nephew and talking to them is a joy.  I need to remember that.

I may be participting in an NF project on coping with having NF.  It’s a long project, and frankly, I think I do pretty well with coping.  Not always, but nothing works all the time.  I need to think more about filling in the forms (I’ve already been accepted; I applied a long time ago but forgot about since it is starting so late after I applied....October, I think).

And reading it yesterday, in the state of mind I was in, I thought “I’m not going to be around long enough to finish”   But I’m always having those thoughts.  When it gets miserable, I have to remember to just let go.  As in, “Surrender, Idiot”

Good luck with that.

Dear Dad

My dad is dying.  His health has been failing for some time, but his time seems to be getting closer and closer to letting go.   My family has been preparing me for it, since I don’t see him in person.  He’s only 45 minutes away but I can’t get there on my own steam and although my brother helped me get there once, he called and explained why we just can’t do it this time.  I get it.  It’s too overwhelming and they have too much on their plates.  My brother told me dad goes in and out of consciousness.  I don’t care what state of mind he is in, I want to say goodbye.  My sister put him on the phone for a few precious seconds and we did just that, though not in so many words.  Just love.  But I can get that connection with my dad without being there in person.  It’s just something I can do.  I would like to be there, but that’s life.  So I wrote a letter to him and hopefully, someone will read it to him.  There are parts I don’t want him to hear….I want to save some for after he passes….a goodbye that others can hear.

Dad and I weren’t always close.  He never really understood the challenges of NF with regard to schoolwork and physical activity.   I was diagnosed in 1958 and little was known about it then.  As for learning disabilities…my folks didn’t want to face it and back then, it was “Lazy/Stupid” if you did poorly.   And you were stuck in the “stupid” classes. There just wasn’t the support there is today (thank heaven).  He got mad a lot, especially when I did poorly in math.  So those of you dealing with a child who has NF, be aware of the non-verbal learning disabilities and be patient.  Get them the support they need.

Something changed when I was in my twenties; he had mellowed a bit (though when my mom was struggling with Alzheimer’s, he was having a very hard time with it) and we grew closer.  Up until a day ago, we spoke every day.   He wanted to Skype with me a few days ago and we were unable to connect.  I had this sense to try it again but I still couldn’t get him to understand how to get it working (although we had done it in the past).  I knew he wanted it because he wanted to say goodbye.  I could just feel it.  So many things break my heart….and I know this was tearing at him.  Hopefully, he is in a better place around that now and doesn’t think about it.  I keep praying that he gets whatever it is he needs and wants. And deserves.  I want him to pass knowing I loved him with all my heart.

Dear Dad:

It has been such a gift to have you in Seattle this past year.  I only wish I had been well enough to spend more time with you in person.  Father’s Day was a blessing and I’m thrilled we had that.

Things weren’t always so rosy between us when I was younger.   But maturing changed things.  (Yours, not mine LOL) So did my health challenges.  I am just so sorry you lived the last few years of your life in pain.  Managing it is difficult, time consuming, soul eroding and often heart breaking.  I feel like you and I went through the dark together, trying mightily to stay away from the abyss which always calls when one is ill.

You were my rock.  “Sherri”, you used to say “You’ve got to keep fighting” You gave me a lot of strength, dad.  Our conversations on everything from baseball to politics were always a joy, even when we disagreed.  When I told friends about our conversations regarding “Brokeback Mountain” and how much we loved it, they’d look at me and say “How old is your dad?”  They couldn’t believe how open minded you were.  Of course, you always were in some ways.  Involved in Civil Rights and other civic causes, you taught with actions, not words only.  That I do, and always will, cherish.  And of course, you made me howl with laughter.  Whatever else presented itself, there was always laughter.  It truly is the best medicine.  I love you.  I will miss you.  And I’ll see you when I see you.

This one's for you!

Six and Counting

I know I wrote about this already, but more has occurred and I just like sharing it so that others don’t feel like they are the only ones this happens to.

When one is chronically ill, staying focused around doctors and hospitals is essential.  It’s essential even if you are basically well, but when your life revolves around healthcare (or lack thereof) learning your way around is the only way to survive and avoid all the pitfalls.   And there are many.  Not all of it is the fault of the healthcare workers since the system itself is in dire need of repair, but you must stay alert and make sure you question things that don’t sound right and stick to what you know is true and for what you know you can and cannot tolerate.

If I weren’t already out of my mind from the pain and from the tiniest of things that upset the balance of my difficult-to-manage days, the hospital where I’m having the MRI would surely send me to the Looney bin.  

·      It took one week for them to call back and schedule an appointment for an MRI of my thigh after my doctor’s visit, and then they had the order so completely wrong, I thought they had called the wrong patient.  “You’re having a brain scan in six months, right?”  they asked.  Huh?

·      Someone finally figured it out that it was an MRI of my thigh, and possibly my spine, but said it would be another few days before they could schedule it.

·         The first time they scheduled it, it was for my leg only

·         The second time they called to schedule, they said the doc wanted a full body MRI.  I told them no, unless I was under general anesthesia.  They agreed but said it had to be in two appointments.  Not what I wanted, and I explained the difficulty in me getting there, but I agreed.

·         The third time they called (very excited) was to tell me they COULD do it all at once after all, and gave me a date.  I was happy

·         The fourth time they called, she said “I made an error, we have to reschedule”.

·         The fifth time they called, it was to get information from me regarding my meds

·         The sixth time (I am NOT making this up) they called, was to get MORE information regarding my health because of the anesthesia.  And now I may need to come in BEFORE the MRI to go over it all in person….but I made it clear that would not be happening.

I am about ready to cancel it all together.  I understand their caution regarding me and all the drugs I take and general anesthesia.  I would not be surprised if they bailed on me.  I’m not telling them about my DNR until the last possible second.  They are freaked enough as it is.

Compared to what is happening everywhere else on the planet, this is small potatoes.  Cognitively, I get that.  My body, however, doesn’t understand.

We Don't Know

Last night I was looking through a list of movies to watch on Netflix and I saw “The Birdcage” with Robin Williams.  It was before I learned of his death.  I watched it and laughed.  And in the morning, read that he had taken his own life.

I know we only see people’s outsides and can’t possibly know what really goes on inside of them (but for a few).  And that’s with our friends and family members.  We don’t know a thing about celebrities except for what we see on the screen or read about in some glossy rag.  But reading about his death made me angry.

Angry because (and again, I don’t know him or his demons) I fight so hard every day of my physically tortured life and it’s a fight for a life I don’t even want.  Why do I do it?  It seems wholly unfair to think it would hurt others around me if I made that choice.  How can anyone (apart from those who have NF or some other physically challenging disorder…especially one that involves pain) know what it’s like not to be able to take oneself to the store, to drive, to travel, to have a NORMAL life?  But hell, what’s normal?  And whose to say Robin William's demons were any more or any less horrific than mine?

We’ve destroyed the planet, there’s war everywhere, Ebola will probably end it for many of us (see why I stay away from the news….usually) and I think, so what if my nieces and nephew have traveled the globe and been to places I can’t even dream of going to, so what if many of my friends are happily with a partner (though many are not), so what if they have careers, lives, etc.?  So What.

So I’m angry that Robin Williams didn’t fight harder.  For all that he had in the way of admiration and success.  And I don’t mean money.  I know he was divorced twice, but he had three lovely adult children and was currently married.  I know we don’t know what happens behind closed doors.  I know because nobody knows my true anguish about having to live this life of mine.

I feel I have to see it through or I’ll be destined to repeat it (or one similar).  I’m just too much of a chicken, truth be told.  Maybe G-d is waiting for me to do it.  We don’t know.  You can tell yourself any story you want to, but in the end, we don’t know. Belief and faith are all fine and dandy and I use both often.  But that doesn’t change the fact the in the end.  We. Don’t Know.

On the other hand, maybe he got it right.

Sometimes

Sometimes the pain is so bad I do nothing but pray for death.

Sometimes it’s just loud background noise and I give a prayer of thanks.

Sometimes I fear the direction this is going and how much longer can hang on.

Sometimes I let go and let G-d, giving my worries to Him.

Sometimes I sink in my isolation from the world, knowing how far I have gone

Sometimes my isolation gives comfort and solace and the abyss is far afield.

Sometimes the panic is breaking down every door in my home and body

Sometimes peace comforts me and lulls me in the Now.

Sometimes the thought of eating anything makes me sick and that scares me

Sometimes when the pain is tamed, I can eat and eat and eat.

Sometimes I’m so angry at everything and everyone my body tenses to steel.

Sometimes prayers and peace shoo the anger away and love steps in.

Sometimes I can almost watch the tumors growing and my tears flow with them.

Sometimes I lay still remember to practice being grateful.

Sometimes I am jealous of good health as cabin fever chokes my breath away.

Sometimes I remember that while not perfect, I do have access to healthcare.

Sometimes the devil takes hold and laughs as my NF brings me to my knees.

Sometimes I see him and call on G-d to help me deal with my challenges.

And He does.  One way or another, not always recognizable, He does.  I just need to look with better eyes, hear with better ears, and feel with a better heart.

Sometimes my head is empty of words to put down.

Sometimes I write anyway.

Sometimes I don’t.

Wait A Day

I was ready to post a different piece but it was so angry, so hopeless and so over the top I dumped it.  Of course, it took talking to someone to get through it, though I didn’t mention what I wrote.  I just spoke of how I’ve been feeling, how bad the pain is and what am I supposed to be getting from this visit to Earth.  And I wrote of wanting to die (again).  That’s why I write and wait.  At least a day, sometimes more.  And sometimes I post the heavy ones anyway, as you know.  With all the bad news in the world (which I get addicted to reading) it just makes the pain that much worse.  But enough.  You get the drift.

So the small voice that I wrote about a couple days ago has been hard to hear lately, but after my talk with my friend, it has become audible again.  And I’ve been wrestling once again with the questions that plague me.  Today I was thinking about G-d and the Devil.  Is it G-d who wants me to learn something   through the experience of physical pain, and does it hurt Him to see me in such a state?  Does He feel relief when I accept it through techniques I have taught myself?  Could it be that this pain is coming from the Devil, and He is watching with drunken glee when I cry out for relief, even if it’s only to the stars and not to G-d?  Or is the Devil mad when I ask for G-d’s help?  And is He mad when I calm myself and accept the pain without complaint?  Okay, that last part doesn’t happen often…only when the pain is at about a “5” do I not complain.

Forgetting about the rest of the planet and all its ills for a moment, I must ask myself this question because I am terrified of how much longer I must endure and it helps to consider these things. 

I know I must finish what I started back in 1953, the year I was born.  Whether I asked for this, or was just given it, or whether it was nothing at all but one big crap shoot, I must finish it.  The only real choice I have is to go out with dignity, or kicking and screaming at the stars to see if they move.  Right now, with the pain where it is, the latter seems unavoidable.  But I hate being a foregone conclusion so I’ll fight the kicking and screaming with a different kind of kicking and screaming.  For now.  And hopefully, until it really truly is my time.

Dear G-d

Dear G-d,

I know you are overwhelmed with heartbreak over what has become of humanity, if indeed I can use that word.  This, I know, is not what it means to be humane.  The horrors that happen in every corner of the globe, every single day  here on Earth, make my own horrific pain ordeal pale in comparison.  It doesn’t feel like it when the pain from the tumors is beyond description; when I can hardly breathe, it hurts so much.  I watch the tumors pushing up against my legs, growing, hurting and causing untold pain. But I am far from alone, though I take little comfort in knowing the whole world suffers. 

I know you don’t negotiate, though I’ve tried that tactic for years: take me Home, or take the pain; I’ve even offered to take MORE pain so others suffer less if only I could go HOME soon after.  Surprise, surprise, it doesn’t work.  When I pray for others it is sincere and from the heart; no strings, just hope and prayer.  But still,  I want it to be over and I wish never to return.  But I guess that’s asking too much, or I haven’t learned what I came here to learn (if that’s what happens) OR, there is nothing and when this is over I won’t remember it because “I” won’t be here.  After all, we are only stardust.  To quote Joni Mitchell, “We are stardust, we are golden, and we’ve got to find our way back to the garden” Good luck with that.

My heart flutters all the time now.  Probably the drugs.  I don’t want to tell my doc because he’ll decrease the dosage and the dosage I’m on doesn’t touch it.  I guess I could try that myself.  Take myself off, go into major withdrawal, and die from the pain of it.  I wish to hell I didn’t think that was cheating. 

Help me, Dear G-d.  Help me complete my task here.  Help me from being afraid.  Help me to let go of anger, confusion, fear of the unknown, fear of living, fear of dying, fear of the pain and even fear of being released from it.  How could that be?  But it can. It is, and it’s confusing.   I can’t be healed because I’m afraid of what might be expected of me if I am.  There. I’ve said it.  Who am I now?  Who would I be if I were healed?   I have a fantasy about being able to heal others.  That is what I would do, if healed.  If G-d would give me that gift, I would find a way to use it.  I twist my mind in knots thinking about the “how” of it.  That’s insane.  I twist myself in knots worrying about the pain and where it will eventually take me.  That, I can understand though I work on letting worry go.  But worrying about how I would carry out a blessing that hasn’t and most likely won’t, happen?  Crazy.

I need to live totally outside my body in order to survive.  All. The. Time.  And it’s just not possible. I need to take myself away, and I need to stay away, in order not to think about taking my life.  People who are in pain but have an “expiration date” (and I know we all do, but I’m talking about KNOWING what it is) might be able to deal with the pain, or at least have it managed better.  Not so with people who are NOT dying but are living in agony.

I’m having a hard time accepting that I requested this life.  Maybe the fact that I’m having a hard time accepting it means I haven’t learned it yet.  Damn.

Just Stuff 2

My generous family bought me an air mattress to replace my 30 year old regular one….haven’t slept well for over a year and even with the soft topper, I feel the tumors and keep waking up.  The first night I slept uninterrupted for six hours straight.  And dozed for two more.

Of course the next night was back to not sleeping.  I do need memory foam on top of the air mattress so I’m ordering some from Amazon.

I’ve been giving a great deal of thought to these dang tumors. I just turned 61, which means I have lived 222,075 days so far (adding in the days since the 23^rd).  I don’t know how that translates into per-diem tumor growth because I doubt that they grow every day.  But they are growing now, and a whole lot faster than before.  And how many days have I left?  Who knows.

Pain is tormenting me lately. I don’t seem to have any good days anymore. And the distractions are not working; I’m out of books and videos for another two weeks until the Library on Wheels comes back.  I got gift cards for Barnes and Noble for my birthday  but I can’t get there and when I go online, I can’t find anything I want or if I do, I think, gee, I could just get that out of the library.  Hopeless.  I’m hopeless.

M help took a couple days off and they sent me a replacement but only for a few hours on Friday and an hour on Monday.   Took all my energy explaining where things are, how things have to be done, etc.   I need to go to the store but likely won’t get there for five more days.  I see my pain doc on Tuesday so she isn’t coming that day either.  My brother is taking me.  They can’t take me because it’s in a different county.  Frigging rules drive me nuts.

I’m really freaked about this appointment.

Preordained Free Will

I was thinking today about all the things that can feel out of our control.   If we fall in love.  Who we fall in life with.  What we choose to do in life (or if it chooses us).  Whether or not we are healthy.  If and what and when we eat.  And so often we are tempted or challenged by things we can’t even identify.  But the one thing we can do, the only thing we can do, is choose how to respond to the situations or temptations that present themselves.  When the pain is overwhelming as it is has been, I can writhe and wither in its clutches or I can choose to be the one in charge.  In pain, still, but in charge.  Doesn’t seem possible, does it?  If I use all the things I have learned (like meditation, “journeys” through drumming, prayer, etc.) my perception of the pain changes.  It becomes more tolerable, less intense.  Not for long of course; I must keep at it every minute of every day and that just isn’t possible.  But I can get relief longer if I am aware of it as much as possible.   So I am constantly pulling myself back from the abyss.  Unless I’m on the pity potty.  And as you know from some of my entries here, I’m no stranger to it.

You see, I am beginning to think that although I believe we have free will, every single decision we make, every breath we take, every blink, every yes or no was decided before we got here.  That sounds like it’s all preordained, but really it’s not.  Not if we were the ones who made those choices before coming into consciousness.  So “we” made those decisions, just not here. But can you make choices without consciousness?  At least consciousness as we know it?  Choices we now have to live out, here on Earth? So maybe, in the end, that fight to survive or to die was made a long time ago.  From wherever it is we came from, wherever it is we will go.  I mean, what’s beyond the known Universe?  A brick wall?  And if so, what’s behind the brick wall?  It’s mind boggling.  The more I watch and read on the Universe, the more I’m convinced there must be a higher power of some sort at the controls.  I think I was counseled on what I came here to learn and agreed to the life I now have.  I just don’t know exactly what it is I’m supposed to learn from living a life of physical pain.

My challenges seem small compared with the rest of the planet.  As I always say, having a roof over my head, food in my belly, access to the medication I need, friends and family…I am indeed lucky.  I freak out, thinking I could, at any moment, lose all that.  Which is why staying in the moment is so essential.

Please, someone email me and remind me of this when I’m off the rails!!!

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.

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 23^rd.    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.

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

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.

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.