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Saturday, September 27, 2014


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.

Friday, September 19, 2014

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.

Tuesday, September 16, 2014

Absolutely Still

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


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.

Tuesday, September 9, 2014

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.

Thursday, August 28, 2014

...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.

Wednesday, August 27, 2014

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.

Friday, August 22, 2014

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!

Saturday, August 16, 2014

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.

Tuesday, August 12, 2014

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.

Tuesday, August 5, 2014


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.

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