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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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