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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: 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


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


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.

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

Long, but good article.

Thursday, October 1, 2015

Eye Yai Yai!

I was supposed to have a cataract removed Monday morning.  I got there, and was told they were running an hour behind schedule.  Not much I could do about that.  I found four chairs lined up together and was able to lie down.  Thirty minutes later, three staff people came out and explained to all of us waiting (no one had been called in at all during that time) that they were cancelling everyone due to an unexpected death of a staff member.  Very sad.

So I went back Tuesday and had it done.  I had to arrange different rides on Monday and Tuesday and again on Wednesday (my regular person was sick) for the follow-up. At present, my eyesight is blurred and I am actually seeing worse than before.  But they checked out my eyes on the follow-up and said it was fine, the healing is different for everyone.  I have to wear a Captain Sparrow patch (actually, it’s plastic) at night, and put in three different eye drops four times a day for four weeks.  That’s fun.  Just add it to all my other garbage I must take.

I think about all the people in the world who are so dependent on mediation to get through the day.  It completely freaks me out when I realize how little it would take to lose access to all of them and what I would do should that happen.  I started to watch   film based on a real life story about difficult it is to get medical supply companies to listen to new ideas….this one being retractable needles to end the hundreds of thousand accidental needle pricks to medical staff.  It’s called “Puncture”.  I couldn’t finish it.  That kind of stuff angers me and anger isn’t good for pain.

I’m so bored I could scream.  I go out for three days in a row and it’s hard on my body but then I want to go out again because I realize just how bad my cabin fever is.  I don’t notice it when I go for a week without leaving the house, but as soon as I do I realize just how cramped in I am.  Currently, my entertainment is feeding the squirrels and the blue jays.  Pathetic.  I even have this Halloween skeleton rigged up to scare away the blue jays when they get to aggressive and scare away the squirrels.  Anything to keep me occupied!

Sunday, September 27, 2015

Last Night (UPDATE)

Last night was one of my worst.  Physically, mentally, emotionally and spiritually, I was a mess.  All I could think about was all those pills, silently beckoning me, taunting me, daring me to take them all.  I actually starting calculating how many it would require to get the job done.  Permanently.   What’s ironic is that the fear that often makes my pain spike is the fear that keeps me from exiting out of this nightmare.  I often listen to Eben Alexander’s journey (according to him, of course) to Heaven and back, but last night I started to really investigate him, something I’ve never done, and now the doubt and embarrassment at my own gullibility took center stage and everything that ever left his mouth or graced the pages of his two books flew out the window of my soul, if indeed I have one.

My struggles with G-d are often epic, fraught with the same questions anyone else asks when faced with the challenges I face and dosed with the usual campaigns of proof based on the state of the planet and those who occupy its deteriorating  landscapes and unbreathable air.   I cried, screamed and planned until I finally fell into a restless sleep that woke me every few hours no better off than when I first slipped into bed, hoping it would be my last time.  I was a mess.

When this happens, all my “tricks” for staying present and unafraid scurry off and I am left defenseless, just waiting for it all to pass.  All. To. Pass.  I try hard to think of things that are reasons to keep on keeping on.  Family.  Friends.  The lunar eclipse that’s tonight (though in Seattle, seeing it will be a miracle in its mostly cloudy skies) and my soon to be cataract-free right eye.  Reading again should be something to celebrate (after four weeks of three, four times a day eye drops).

But is it enough?  This is the constant question I torture myself with.  Heck, I don’t even blog like I used to.  I feel I have nothing to say that’s new, nothing to share that’s relevant or helpful, nothing to add, subtract or make clearer.  Oh, my new pipe came and it works.  I could tell as soon as I looked at it that a piece had been missing, which is why it leaked.  So I’ll be dosing before my appointment tomorrow since they won’t be giving me anything due to all the drugs in my body. 

I don’t blame the doctor for being a bit freaked when he saw the list of meds.  And CBD doesn’t make you goofy like THC (the part of cannabis, or as we call it in the states, marijuana, that makes you high).  They can even sell it online as a supplement now.  Wonder how long that will last.  The US is so screwed up I’ve lost ways to count how much so.   Our prison system, our gun “laws”, our denial at what’s in front of our faces.  I am so saddened for anyone younger than 30.  Which includes my nieces and nephew.  

And I wonder if indeed my family would prefer it if I checked out; not for them, of course, but for me.  My sister often tells me "she could never have lasted this long if it were her".  I know she means it as a compliment and a way to let me know she would understand if I took matters into my own hands.  It would not bode well with me if she tried to convince me life is worth living no matter what.  The conversation itself was taboo for many years after her first husband took his life.  For reasons no one could fathom.   And the truth is, you don't know what you can and cannot handle until you're faced with it.  If someone had told me this is here I'd be 10 years ago, I may have ended it then.

I just pray it’s me and my mindset and that there is hope.  Hope for those with NF and all other diseases and disorders, hope that our food and water sources are somehow saved, hope that our air becomes breathable and hope that I get off this planet and onto some other realm that offers a pain free existence.  I saw this short piece the other day.  Who knows if it’s true.  But I liked it:

When Gandhi was studying law at University College, London, a professor, whose last name was Peters, disliked him intensely and always displayed prejudice and animosity towards him. Also, because Gandhi never lowered his head when addressing him, as he expected…there were always arguments and confrontations.
      One day, Mr. Peters was having lunch at the dining room of the University, and Gandhi came along with his tray and sat next to the professor. The professor said,  "Mr. Gandhi, you do not understand. A pig and a bird do not sit together to eat."
     Gandhi looked at him as a parent would a rude child and calmly replied,  "You do not worry professor. I'll fly away,"  and he went and sat at another table.  Mr. Peters, reddened with rage, decided to take revenge on the next test paper, but Gandhi responded brilliantly to all questions. Mr. Peters, unhappy and frustrated, asked him the following question. "Mr Gandhi, if you were walking down the street and found a package, and within was a bag of wisdom and another bag with a lot of money, which one would you take?"
        Without hesitating, Gandhi responded, "The one with the money, of course."  Mr. Peters, smiling sarcastically said, "I, in your place, would have taken wisdom, don't you think?"  Gandhi shrugged indifferently and responded, "Each one takes what he doesn't have." 
       Mr. Peters, by this time was beside himself and so great was his anger that he wrote on Gandhi's exam sheet the word "idiot" and gave it to Gandhi. Gandhi took the exam sheet and sat down at his desk trying very hard to remain calm while he contemplated his next move.   A few minutes later, Gandhi got up, went to the professor and said to him in a dignified but sarcastically polite tone, "Mr. Peters, you signed the sheet, but you did not give me the grade."


Who am I today?  Gandhi, or the Professor?   

Wednesday, September 23, 2015


I had a post about hemp oil from a company called  I took it down not because of the company but because of some concerns I had about all hemp oil and an ingredient that is widely used called Propylene Glycol (PG).

I just want everyone who checks out using a vaporizer with hemp oil to help with the pain understands it all.  There are some oils made with natural ingredients and I’m trying to get a hold of some.  It seems like the vast majority of the oils does use PG from the places I’ve checked.   I’ve been using the “cartridges” that go into the vape “pen” for over a year.  I just switched to the oils, but when it’s heated from the battery in the pen, that’s where the potential danger arises.  So check it out and decide for yourself.

I was impressed with in terms of the team and the service, and all the sites I looked at use pretty much the same products, but a few don’t.

In other news, my cataract surgery is coming up on the 28th and I can’t wait.  My eye has been hurting like crazy.  Hope it’s nothing more than the cataract, though it might be something else.  However, when I had the eye exam, they didn’t raise any alarms about another problem, so fingers crossed.

Pain has been up and down, mostly up.  The weather turned a few weeks ago and will stay this way for some time now.   We needed the rain.  I’ve been leaving peanuts out for a couple squirrels on my deck, and the Stellar Blue Jays are driving them away.  They are the campground bird stealers.  Last weekend I caught a couple squirrels making whoopee on the deck as I closed the blinds.  No respect, I tell ya!

Monday, September 14, 2015


This past June, a cousin of mine in another state has a daughter who got married.  Like all else that is family and friends, it was an event I had to miss.  Today is the first day of the High Holy Days, another event I am missing.  All due to NF.  I’ve missed the holidays (High Holy Days) for years now.  Missing the wedding of a cousins child was one that hurt.  A lot.

Today, I just got a link to a video on it.  It looked like something out of a movie.  So many people I haven’t seen in so many years, half I did not recognize.  Except that I did.  They just looked…older.  If they looked older, I must look like my great grandmother.    I watched as Danielle walked down the aisle, as they broke the glass, as everyone cheered (all with music, no other sound) as they danced, laughed and celebrated the joy of a new generation starting a new chapter of their lives.

These are the things that bring up the pain and make it worse.  These are the things that hurt like hell.  Not being able to share in the joy.  Not being able to dance, to fly out somewhere and celebrate a life changing event, not being able to do the simple things that everyone takes for granted.   I want so much to be in the world and not just of it.  But it is not to be.

And it’s these moments I must remember, must really, really work on remembering, that I am loved.  Not just familial love.  Not just friendship love, but that bigger,  indescribable love that comes from the place we came from, the place to which we are returning, the place that has no bounds, no physical restrictions, no sadness about not being able to do the things that limit me here on Earth due to our bodies or any other kind of restrictions.  A place humans cannot destroy.

I am a spiritual being having a human experience.  And as human experiences go, as they all go, it is a challenge I just may have signed up for, for better or worse.  My job is to complete it.
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