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Tuesday, January 26, 2016

Farewell to our dear Sherri

This is a special post from Sherri's family.  She had instructed us to send a last communique to her blog readers when the time came.

Our beautiful Sherri passed on Monday, January 25th.  As her body declined over the past two weeks, her radiant being was ever more vivid.

Sherri often wondered out loud what her purpose was.  To us, her purpose was evident:  She was here to enrich our lives and the lives of our children.  Her Godly soul became refined in ways we can't imagine.  The trials and torture of her body were the chisel only the most rare of God's children have the endurance, strength or grace to withstand.   We are comforted that Sherri achieved a certain measure of peace and serenity---though never without  pain---and lived life on her terms to the best she was able.

Sherri asked us to play a song during her funeral service, "Be Still" by The Fray. She posted it here previously and we're sharing it again.  When she played the song for us a few weeks ago she said, crying: "I feel God is talking to me when I hear this song."  It comforted her as she contemplated the inevitable arc of her soul's sojourn on earth and the transition back to God.  Anticipation, fear and love.

We will miss her terribly, she was our inspiration......and we are comforted as we imagine her lounging and luxuriating on a fluffy cloud of pure light.  Her parents Leonard and Rivian will take her the rest of the way.





Sherri also asked that we share a poem, "Epitaph" by Merrit Malloy, here below:

By Merrit Malloy

When I die
Give what’s left of me away
To children
And old me that wait to die.

And if you need to cry,
Cry for your brother
Walking the street beside you.
And when you need me,
Put your arms
Around anyone
And give them
What you need to give to me.

I want to leave you something,
Something better
Than words
Or sounds.

Look for me
In the people I’ve known
Or loved,
And if you cannot give me away,
At least let me live on in your eyes
And not your mind.

You can love me most
By letting
Hands touch hands,
By letting bodies touch bodies,
And by letting go
Of children
That need to be free.

Love doesn’t die,
People do.
So, when all that’s left of me
Is love,
Give me away.


Sherri will be buried in Seattle on Thursday, January 28.  The family requests donations to the Children's Tumor Foundation in lieu of flowers.

Friday, January 8, 2016

Fear of the Harp


This may be my last post.  It's getting repetitive and I'm in so much pain these days, it's hard to do this.  Thanks to all who read, and I hope your NF or whatever keeps you in pain, resolves itself....be well, be happy, be compassionate, be grateful!



When I was about four years old, I was a flower girl for the wedding of a cousin (who I don’t recall).  I keep the old black and white picture of me holding my mom’s hand and looking up at her, as she gazed back down at me.  We were both smiling slightly.  I would not walk down the aisle as I was afraid of the harp.  Perhaps that’s why I never got married, and why there is a tiny part of me afraid of dying.  Fear of that harp.

My dear, loving sister was here for a visit the other day.  She always brings such joy and wisdom.  I was crying on and off, something I don’t do often, and saying I wish I were stronger, I wish I never complained about the pain.  She went over to a bookshelf and pulled out that framed picture of me and my mom and dropped it on my lap.  Then she asked “Would you expect this little girl to keep on taking the pain without complaint?”   I burst into tears.  No, I would not.  I do believe our birth order got turned around, or perhaps it was different in another life.  Tami feels like the oldest, I’m still in the middle, and Jeff is the youngest.  She sure is wise.

So why am I so hard on myself?  What do I expect of my ability to continue to manage an unmanageable condition?  One that keeps me in horrific pain every waking moment?  I keep telling myself the world is a frightful place and is getting worse all the time.  What have I got to complain about?  I have food, shelter, access to health care and friends and family who support me.  Pain?  Pffft.

Except that I can’t distance my body from my mind every minute of every day, which is what I have to do to get out of my body like an OBE (out of body experience) .  I chuckle when I read about people who “can’t “ meditate because 20 minutes is too long to be still.  All right  then.   I just need to keep working on it. I want to get out of my body and watch it from afar and afar from the pain.  Wouldn’t that be nice?  Of course, I would be unable to do anything so that wouldn’t be too different than how it is now.


I have felt Oliver around me a lot lately;  Very strong sensations.  I feel my mother as well.  And the rest of the gang.  Sunday’s Seahawk game against the MN Vikings should be fun.  Being from MN, my dad was a huge Viking fan.  So when they play the Seahawks, I pretend he’s in the chair he used to sit in and we watch the game.

Sunday, December 13, 2015

Desired Destinies 2

This is a tad different then the first version.  Struggling a lot lately, but my friends from my blog and those who know me outside my blog, not to mention family, keep me on course.  Special thanks to Erin, Carolyn and Becky (and her beautiful daughter, Ashley)!


How many of us want the destinies given to us?  How many of us even know what that is?  We think we might know (It’s our destiny to be together/alone/this career, etc.) but do we really?  I’m not sure we ever find out because it changes, just like everything else.

And how many of us want everything we have?  I don’t mean having everything we want…..few of us do, and even those who think they have everything they want in a particular moment seldom sustain that feeling.  Because there is always more, always something new around each and every corner that we think we can’t live without.  Mostly, we still live.

But wanting everything we have….that’s the challenge.  Personally, I can tell you right off the bat that I don’t want NF (my disorder).   And I certainly don’t want everything that goes along with it; agonizing pain, dysfunctional digestive system, inoperable tumors, isolation due to the pain…..and on and on and on.  The things I actually want are few:  My friends, family, books, music, etc.  The rest, you can have.

And that might be the biggest mistake anyone can make...  Throwing away that which feels profoundly inconvenient, hurtful, useless and empty-feeling (so we think).   But the painful (no pun intended) truth is, my body doesn’t really know what is useless to me and I’m not sure my soul does either.  I haven’t a clue what I am supposed to be learning, but I’m learning something, that’s for sure.  Kindness, patience, understanding, empathy….these are all things I strive for not in spite of my condition but because of it.  And I fall short 90% of the time.  So I pick myself up, dust myself off and try again the next time whatever challenge presents itself.  I can hear the little voice whispering in my ear reminding me, but I often yell over it.  Make no mistake, it’s the quiet voice you should be listening to (unless it’s telling you something bad, but that’s another story).

 We can’t know much of anything when it comes to being here, living this life and seeing all the misery around us.   The good too, but it seems to me that as I age, the good things became more rare.  And I don’t mean because of illness and personal challenges.  I mean in general.  Perhaps it was always this way and the digital age just made it that more apparent.  We instantly know what happens halfway across the planet.  Once again, I’ve weaned myself off the news because it’s just too depressing to read and increases my pain dramatically.

As my need for more help grows, the letting go of control becomes crucial to surviving the lifestyle change. Accepting that I can do less and less is beyond challenging.  And the one thing that gets me through it all is acceptance.

I've posted this song before but I wanted to use it again....it's a lullaby written by one of the Frays for his nephew...but I hear G-d talking to me. 




Thursday, December 3, 2015

Word Salad

I’ve been struggling with words lately.  Or the lack of them thereof.  At least words that make sense to my drug infested brain (all of which I’d flush down the toilet in a heartbeat if not for this unbearable pain….I’m writing this part for any new readers who may not know of all the things I do in addition to just popping pills….and there are many.  Read other entries if interested).  I’ve been wanting to write another post, but all I have in my head is word salad.  Too much news again.  So let’s skip that, eh?

I have been having some stunning visual and audio experiences through meditation, dreams and prayer.  The pain has been stunning, the darkness of the short days difficult for me to get through (always has been) and generally, I’m just flat-out depressed.  The CBD doesn’t work so well anymore, I’m having trouble finding help over the holiday period (or the case manager having trouble finding a replacement for the two helpers who are taking a few weeks off) and the only happy creatures near me is the squirrel and his buddies, the sparrows and the hummingbirds.

My family has visited over the holiday as well as a good friend I met through this blog.  That was great.  Indian food as opposed to turkey.  Not a big turkey fan, though my sister brought over an awesome turkey sandwich from this incredible shop she goes to for such things along with a slice of chocolate cake that was beyond delicious.  Whew.  My brother and his family are off to Hawaii, my sister’s youngest is on her way home from a semester in Eastern Europe (and with all the unrest it was scary for those of us waiting for her to return) and her oldest is getting ready for 10 days in Haiti on a humanitarian trip; it’s what she wants to do.  Public health in faraway places.

My nephew (brother’s son) is still working his tail off to get Carbon Washington on the ballot (to lower emissions output) and their daughter is still trying to decide whether or not to pursue law.  So long as she’s on the right side of it (the law) I’m all for it!  Not that my opinion matters.  Man, I feel old, listening to their life stories at this point.


I’m listening to banging all around me because their having our windows all replaced with energy efficient ones.  It’s cold and rainy and the windows will be off most of the day tomorrow.  I’ve been watching them to the other ones; takes a long time.  I just cancelled my morning help because I will have to barricade myself in my bedroom so they can do the living room first (I will tell them that’s how they have to do it) and then switch in the afternoon so they can do the bedroom and I’ll have help here with me in the living room.  Yikes.   I may have to do a marijuana run.

Wednesday, November 11, 2015

Hope There's Someone

Last night I was watching (again) YouTube videos about consciousness, near death experiences and dreams.  My body was in agony and my mind was racing at a million miles an hour, trying to make sense of what I was listening to, watching, and feeling physically.  After a couple hours I had to switch to some old television show, giving my brain a rest.

I get that my life is my life, my adventure here designed for me and me alone.  I know deep in my heart that I am very lucky in many ways; family, friends, access to my medical needs, food.  I know those things are beyond measure.  I just get tweaked when I hear, like I did in one of the videos, a doctor talking about people who are in the end stages of their lives and how the primary concern is keeping them “out of pain and comfortable’.  What a concept.  I’m not in the end stages of life (to my knowledge) so I don’t get to be kept “comfortable”.   I also don’t get to choose to die, at least not legally (though it is legal in Washington state).  It’s a huge hole in the right to die system.  The line has to be drawn somewhere, yes, but drawing it in front of someone in agonizing pain for over 15 years with no end in sight is….insane.

Tonight I am feeling like I want to end it, right now, right here.  But the thought of actually going through with it makes me so anxious I want to scream.  I don’t know what is worse.  It’s all the word salad about being “punished” for taking my life that stops me.  Everyone tells me “No, Sherri, that won’t happen” but who the hell knows?

One of the YouTube shows was on this experiment done years ago in the UK on the afterlife and communicating with the dead through a radio.  Okay,  then.  I tried to find the book to put it on hold at my library, but I couldn’t find it.  It was called the Scole experiments.  Watch it, it’s fascinating.  Really out there. 

I feel like I’m treading water that’s in an abyss….everything is scary, out of focus and feels hopeless.  Everything.  I’ve never wanted it to end so bad.  I want to see my loved ones who have passed.  I want them to show up for me.  All the gifts I had regarding being in touch with the other side, and there have been a LOT of them, vanished when I had to start taking medication for pain.  Since the opiates do little to abate the pain, I wonder if I can wean myself off of them and stop all together.  I wonder if it would be any different, really.  Scares the hell out of me because it’s already bad.  

 I saw my healer/acupuncturist today…she always helps me.  And I need to do a Shamanic journey.  Haven’t done that for ages.  AND, I need to STOP reading the news.  I’ll. Never. Learn.  Or maybe I will.  Some day.  She told me those gifts I thought I have lost are still there, and pointed out some things I’ve experienced on her table that I forgot about.  I guess I still have those gifts: they are just slightly different now.  Not as fun.

I started going through all my “stuff” the other day; found a bracelet my sister gave me after my first tumor surgery in 1995.  It is beautiful silver with tiny hoops and the word “Strength” on the circle that holds it together.  I need strength.  I may need it to end my life when I get brave enough and the pain is bad enough.  But again,  I don’t want to make that decision because I’m sad/mad/fearful.  I want to make it when I just know I’m done.  When the joy is no longer there at all.  Every time I get a small break in the pain, the desire to end my life vanishes.  But the breaks a few and far, far between.  So I just sleep with the picture of my grandparents and parents, asking for help. 

I’ve been getting horrific headaches.  I don’t normally get headaches but they come in short, painful bursts.  Maybe it’s a sign.  Maybe my sudden urge to cook and actually eat what I make (though small portions) is a sign.  Embracing life prior to moving on.  What a pip, eh?

I know I’m all over the map here….I know I should not be reading the news non- stop the way I do.  I know my anxiety levels are through the roof due to my behavior around this issue.  I just can’t help myself.  The news flies by at lightning speed and it’s all bad.  It scares the tar out of me.  Coupled with this agonizing pain that just doesn’t let up for more than an hour every other day or so (no exaggeration) I can hardly breathe.  Getting out of my head is harder and harder to do.







                                                                   

Tuesday, November 3, 2015

Rainbow Room

When I was a kid, there was this restaurant in Minneapolis called the Rainbow Room.  This was in the late fifties/early sixties.  My family would go there Sunday nights sometimes, and my grandparents from both sides often joined us.  My brother and I (sister was not yet born) would huddle down in the backseat “dodging” the lights that would often flash across the skies, announcing a new movie playing in a nearby theater.

I have occasionally written about my grandmother Ida, my dad’s mother.  She was and still is, long after her death, a driving force in my life.  I often reach out to her across the veil that separates us, asking for her help.  Such was the case last night.  I had a very bad day.  My sister had come by to visit bringing with her a delicious lunch.  I usually am able to gather myself together enough to chat, laugh and have the best time possible given my limitations.  I was unable to do that Monday.  She could see it, and only stayed a short time.  I felt bad, as it is a long drive.  Perhaps I should have called to cancel, but I wanted to see her.

Anyway, last night I was in one of my awful mental/spiritual/physical situations, crying for it to be over.  I begged for Ida to appear to me; to show me something that would help.  Like death.  It wasn’t my usual crying jags.  It was more of a giving up emotion.  I’m just worn out.

The surgery in February was a bust, the tumors are back and hurt like heck; my cataract surgery changed nothing, except that it’s a little worse.  The dry eye makes my eyes hurt.  I did get a new prescription which should be in soon and I’m hoping I can go back to reading….I know I can do audio books but it’s not the same thing.  Reading is cathartic; listening feels passive unless the speaker grabs hold and even then the experience isn’t the same.  So poor me, pity potty, etc.

Anyway, after waking up every hour I finally fell asleep.  Then came the dream.  I was in the Rainbow Room with my family (not all, but I remember some) and my Grandma Ida was to the left of me, eating quietly.  At some point, everyone but my grandmother moved to the other side of the table, down and away from her and me.  Then, suddenly, we were in a hotel room, only it was a room next to a noisy street full of drug addicts and hookers.  I tried to get us a different room.  And I did.  Then I woke up.

I haven’t a clue what any of it meant.   The “hooker/addict” thing could have been about me (well, the addict thing anyway) but I’m not an addict; dependent yes, but as I always say, I’d flush every last pill down the toilet if I could.  But I need them the same way someone else needs blood pressure medication, etc.  Somehow though, seeing her and being aware there was a “rainbow” involved, lifted my spirits a bit.  I went out with my help today to get some things to make a slow cooker soup. I’ve been experimenting with slow cooker recipes, just so I get food in me.  So far, I haven’t found anything I like,   But right now, I smell the aroma of the lentil/Portobello mushroom soup that Maria is making for me..  We shall see.


And maybe, just maybe, I’ll see Ida soon.

Wednesday, October 21, 2015

Calming Influences

As I write this I am watching the Decorah Eagles who are back for 2015 thanks to a dedicated group of people in Decorah and around the country who have donated time and money and hard labor putting back what was sadly, broken.  The cameras came down in a storm, then the nest and then much to everyone’s anguish, the death of Bob Anderson, who made all this possible through the Raptor Resources Project.  It was an awesome effort that culminated in a “starter nest” which these beautiful majestic eagles have taken to.  They are currently making “nestorations” for the coming year so hopefully, we will have much to see (in high definition no less) this year.  I can’t wait.  The camera operators are unbelievable.  If you haven’ t done so, visit them at:

http://www.ustream.tv/decoraheagles and enjoy!  Right now, I’m watching them wrestle with sticks.

Between the live cam eagles and the real life squirrels and hummingbirds, I am entertained when I allow myself to relax into it and appreciate the things that I DO have.  It helps put the pain, frustration and anxiety in the background.  I’m listening to my bilateral music too…all these things help some, when I let it.  Letting it is always the challenge though.  It’s been a rough few days.  Anxiety is high, pain is high, panic is high and I’m not (high) LOL.  Not sure if the CBD is working much; hard to tell.  But I was without it for three days when the pipe broke and I was in a bit more pain during that time so maybe it is working.   I’d like to know how the eagles stay calm.  They have a rough life but they always look so proud, so happy to be alive and knowing what they have to do to survive does not include even a nanosecond of self-reflection or pity.    They would die if they stopped for a moment, and they know that innately.   Wish I could say I know it.


Last night was a bit better after a difficult day.  As I closed my eyes in bed, I gave thanks for it.  I said “thank you for the better evening” and as I did, I instantaneously heard (in my head, of course) “thank you for accepting it” and I kind of got that familiar jolt of understanding that my relationship with those who have passed is symbiotic in nature.  I just have to listen to the quiet and they are there for me.  My loved ones, G-d and my guides.  All of them.  All the time.  And I was reminded that it isn’t enough that I have a “good” day or a good hour; if I don’t accept it, if I am only aware of the pain and the challenges, I will never have a good moment.   Paying attention is essential.



Monday, October 19, 2015

Acceptance

I vacillate a lot here so stay with me.  Dragging under the weight of myself I rear up again and again, not knowing why I struggle to stay afloat in a life I profess to hate.  Not because of what I don’t have; never because of what I don’t have.  Accepting what I do have is always the challenge, always the thing that haunts me night after night then day after day as I struggle to make sense of a question that no one on Earth can answer  Why?  Not “why me?” that sounds so selfish and silly.  Having all this time to do nothing but read the news and try to make sense of what we do on the planet, the mistakes we make over and over again in the name of …of what  There is a strong wind blowing and it’s moving closer and closer to extinguish the flame on the candle that is us.  The one that burned bright at one time.  Or did it ever?  History tells us it struggled to burn brightly from its inception and may only have done so to cast the darkest of shadows.  But staying focused on the light is the only way to win the struggle.  All struggles, regardless.

So I’ve been watching a lot of YouTube videos on near death experiences, spirituality and such.  Saw some great ones with Ekhart Tolle, the guy who wrote The Power of Now.  And I’m trying very hard to remember to just trust G-d.  When that thought hits me, the tension diminishes, just like when I remember that I am loved.   I still pray for death every night, sometimes all day.  I had a great hold on my emotions for several months but it all fell apart.   I try to imagine the pain as something other than pain; something neutral, something pleasant even.  Sometimes it works, sometimes it doesn’t.  Because I have to keep a hold on it every second of every day and it’s impossible to do so.  But all one can do is try.

So I’ll keep trying to keep my head above the raging waters of pain and keep reading inspirational stories and watching/listening  to spiritually based YouTube videos.  They sooth my soul.  Accepting the way things are is challenging, to say the least.  One of my favorite quotes, which I have on my blog (but haven’t thought about lately) is this:


“The desire for freedom, as it motivates us to our natural state is great joy; the desire to be free from things the way they are, great suffering”  Stephen Levine

Thursday, October 15, 2015

Bravery

My eyesight still hasn’t improved.  Sigh.  It would be nice to get to the other side of one of my challenges.  My tumors in the leg where I had surgery grew back.  And there has been a general increase in their numbers.  See, this is why I get so frustrated and freak out from time to time.  Everyone has challenges.  I don’t think I’m alone in mine for one second.  It’s not being able to get past mine that frustrated me.  Sometimes I can accept it, sometimes I can’t.  And when I can’t, when I start thinking about people who have, and get past their challenges, that’s when things start to de-escalate for me.   Staying in the now becomes a major challenge.  But I work on it.  Every second of every day.  Sometimes I can (do it) and sometimes I can’t.   That’s life.

Good news! (for me).  The eagles are back!  After all the setbacks this year (the nest fell in a storm, the director of Raptor Resources Project passed away), the good folks of Decorah, IA made a starter nest and Mom and Dad took to it!  Cameras are back up and I just checked in on them.  So good to see them working on making the new nest home.  If all goes well, in six to eight weeks we should see (three, hopefully ) eggs!  Three is high for eagles, but that’s when these two have been producing and there have been 23 so far (two the first year). 


So between the eagles on the webcam and the hummingbirds, squirrels, Stellar Jays and some tiny birds I can’t identify all on my deck, I’m entertained.  Now I just need my eyes to come back so I can return to reading.  I started listening to digital books but it’s not the same (for me).  I love to read.

Sunday, October 4, 2015

Eben Alexander

I was telling someone about my thoughts on Eben Alexander and how they have shifted.  Strangely, Dr. Alexander responded to an email I had written a few weeks ago.  And it was personal, not one of those automated responses.  In writing to my friend about him, she sent me this article which I found amazing.

I was right the first time (about him) and should not have doubted.  In doing so, I've had one of the most horrific weeks I've had in a very long time.  Dig deep, before making decisions.  To decide is to cut off other possibilities. 

http://iands.org/news/news/front-page-news/970-esquire-article-on-eben-alexander-distorts-the-facts.html


Sorry, I can't get the link to work.  Cut and paste....worth it

Long, but good article.
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