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Sunday, June 23, 2013

60 Years Ago Today

60 years ago today I was born.  Five years later, a doctor noticed the cafe au lait spots on me and warned my mother of a potential health problem that could be serious.  It was called Von Recklinghausen disorder at the time, named for the person who discovered it.  Later it was changed to Neurofibromatosis.  At age 11, the diagnosis was made.   And it’s been endless doctors, pills, MRI’s (before that other X-rays) and who knows what else.  At the time, learning disabilities weren’t a consideration for anyone, including me.  It was regular classes or the “dumb classes” in some cases.  Mostly I was with everyone else. 

But I did poorly and suffered mightily, struggling to keep up with my peers, most of whom seemed to manage just fine.  The exception was writing.  And reading.  I read all the time.  And if a teacher gave us a writing assignment with a minimum number of words, everyone would groan except me.  I always went over.

When I had my first surgery they warned me I may come out paralyzed from the neck down, depending on how the tumor on C-4 was seated.  It was, thankfully, something the surgeon was able to take out without paralyzing me, although it grew back and had to be removed again.  The tingling and numbness are back in my arms and hands though not as bad as it was then.  But legs and feet?  Horrible.  The pain?, well, you know.  Atrocious most of the time.  And the news of the world makes it worse, so I must stay away from it.  I am terrified for our planet and everything on it, including people though not me.

All that aside, I am grateful I have been able to experience the following:

The sunshine, blue skies and warm air to sunbathe in, hitch-hiking around the country when I was 22, camping under starry skies, watching an eclipse of the moon (and a “supermoon” is going to be visible tonight if the clouds stay away), all the love affairs I’ve had, short though they were, too many jobs to count but had fun in many of them, dear and true friends, family that accepts me for who and what I am, milk chocolate when I was a kid, dark chocolate now, the “est” training and what it taught me, though we laugh at it now at the time everything was fresh and new and “mind blowing”, the chance to experience at least some of the sixties, though I was pretty young and many more things that would take pages and pages to fill.  But most of all, I am thankful for this:  My pain.

I know that sounds weird, but the pain has taught me more about life than any of the “pleasurable” things I listed.  It’s taught me patience, understanding, acceptance and has helped me to guide others though this maze/abyss.  I have learned much from other people as well.  It has taught me not to judge so much. And not to worry if I think someone is judging me.  I mean, if someone says something to or about you that you feel is unkind, the only time it matters is if what they said was true.  And sometimes, not always, if it hurts that much, there is a grain of truth in what they said, you just haven’t uncovered it in yourself yet.  If there is no truth it what they said, smile to yourself and let it go.  I’m working on that one. 

Make no mistake, I still want to be done.  Clearly, it isn’t my call, at least not yet.  I haven’t been able to unravel the mystery of why I think it would be wrong.  If my body is but a vessel, and that vessel is feeling agony, why not get rid of the vessel?  Sigh.  It’s not so much a religious reason (for not doing it).  It’s a spiritual one.  Feeling like it would be somehow cheating.  Cheating my soul from learning something to its completion.  Why do I think things like that?  When the pain is unbearable, I feel like a fool for thinking that way.  When the pain is tolerable, I kind of get it.  

My body continues to change, like everyone else.  And yet, not like everyone else.  In the end, I guess, it's all the same

Thursday, June 20, 2013

An Honorable Woman

 I wrote this over 10 years ago.  My mom would  have been 90 on the 13th;  I’ll be 60 on the 23rd.     I’m re-positng this in her honor:
 Dear Mom:

I’m sitting here, trying to pinpoint the moment in time our relationship fossilized.   When its’ rehashed comments and responses became so etched in each of our psyches that they may never be erased.  I write “may never” because no matter what, there is always possibility.   Even time and space can’t trample on possibility, so long as we are open to changing that which we think is unchangeable.  At least that is what I believe.

Blame is something the entire family embraced and practiced well.  Unfortunately, you were the target of much of that blame.  We all perceived your dependency on others as weakness of character; your lack of what the world sees as “accomplishments” as failure to achieve, seldom recognizing your goodness as achievement of the highest order.  We confused dependency with need, making it a hateful four-letter word.  Now, as I near fifty, I see myself as having what I thought were your “weaker” qualities, especially the “lack of” type that are only measured here on Earth.  And being ill, I now need many of the things you did, like help with finances and occasional assistance with my mobility.  And it’s worse all the time; I need a caregiver part time.  The fact that I drive and worked most of my life didn’t release me from what I perceive as failure.

Some say we are put here to accomplish things, making ourselves into people that others can point to and say, “Oh, she’s a doctor, lawyer, astronaut, teacher, musician.”   What we have trouble coping with is how little those things really mean.  Still, being none of those things, I sometimes think of myself as having all zeros on the scoreboard of life.  I’ve been looking at the wrong scoreboard, Mom. 

I’ve been forgetting who you really were.  Your sweetness, your loving kindness and your astounding soul.  You overflowed with those qualities.  Do I possess any of them?   If so, then why is it so important for me to be seen in a way that I know deep inside means nothing in the long run?   Certainly, not everyone has that need.  There are entire societies that know how to acknowledge and cherish the values I sometimes toss aside. 

You know, Mom, I left my birthplace in 1986 in part because of my relationship with you.  Your dependency on the family drove me nuts.  And as much as I loved you, I was beginning to hate what I believed to be your weaknesses.  You didn’t drive.  You didn’t work outside the home.  You didn’t seem to have any hobbies.  You volunteered, but not much.  You were artistically talented, but didn’t pursue it.  I was so angry about so many things.

And yet, when I wanted to move away and started crying at the thought of how much work it would take to make that happen, you turned to me and said, “I’ll miss you like crazy, but you have to go.  Don’t be a big scardy cat like I have been all my life.  You can do it.”  And you cried.  And I cried.  Those words are forever etched in my psyche. It was the bravest thing I ever heard you say, and in that moment I was so proud and thankful that you were my mother.  I still am.

But in a way, your response also scared me because now I had no more excuses.  It had been 11 years since I promised myself I would move, but you had been my stagnant pretext.  I got to blame you and your dependency and be mad, instead of just taking the risk.  And now the jig was up, so to speak.  You threw the ball squarely in my court and I had no one to blame, only a risk to take. 

Our relationship got better after I left.  But soon, you really started to get sick.  Little by little, you disappeared on us.  Sometimes I am terrified I will get Alzheimer’s and have no control over myself, my life choices.  I’m halfway there with my current illness.

When I went home to help Dad get you settled in the assisted living facility, you had a cogent few moments, and said, “I like this place but I don’t want to live here alone.”  You cried.  I cried. Dad cried.  I thought I would never forgive myself.  Dad thought I was blaming him, but I wasn’t.  In fact, I wished he had done it sooner, because you were so sad all the time and he was irrational and truculent about taking care of you.  Only he couldn’t be there 24 hours a day, of course.  He would take off occasionally, and whether he was gone a few minutes or a few hours, you would be all alone, not knowing what to do, not knowing who or where you were half the time, and frightened.  The hole in your heart was abysmal and dark, and your endless tears drowned nothing.  And I was 1600 miles west..  Dad finally got someone to come to the house half time, but it wasn’t enough.  After you went in the home, you seemed happier for a short time.  Then you just got smaller and smaller until you flickered out. 

We were all there on that day; I felt your presence until the moment you let go.  As my head rested on your chest, I felt your life-force move through me in a halting intake, then out my mouth in one big gasp that came with your last breath.  My head reeled up and I wailed,  “She’s gone” to the rest of the family, who were gathered around you.  The essence of you vanished in an instant, leaving behind a vapor trail and the casing that was once your body.  I felt G-d’s presence twice in my life; once when I witnessed the birth of your first grandson, my nephew, Benjamin, and in the moment of your death

I know all those things I think of as success aren’t what really matters, even though the world tries very hard, every single day, to tell me otherwise.  Our “success” in the world is far different then what starts as gold stars delved out to us as preschoolers.  And those gold stars are all too often the chrysalises of what becomes the canonization of over-achievers.  Our society rarely recognizes that hard work doesn’t always pay dividends.  And yet we frequently forget, if ever we are taught, the Golden Rule.  But you taught it to me in spades.  I only wish I could appreciate all that you were, without beating myself up so much.  I know you are never very far from me.  I sometimes feel you a foot or two above me, to the left, smiling down.  I turn to you during those times of despondency, and once, while meditating, I “heard” these words:

 “Sherika, my sweet girl”  (Your eyes are glistening with tears.  I feel one hand on each of my cheeks.) “You are so brave.  I know you don’t think you are, but it’s true.  That cynical side of you is racing to catch up, telling you it’s not hard to be braver than me, who wasn’t brave at all.   But that’s not what I mean, and your soul knows it. 

You feel you don’t belong, but if you are there, you must belong, right?  It’s taking me time to adjust to being on the other side.   I miss you so much.  I miss your Dad.  I’m happy he is with someone.  But it’s not as easy to let go of jealousy as the movies make it out to be.  There are bits and pieces of what we once called our humanity that want to cling to the life we just left.  But the worst is over. The disease.  And I know that’s what you want for yourself, too.  I wish I could help you in that department.  I wish I could say something that doesn’t sound like it belongs on the bumper of a car.  I wish I could see you, touch you, and talk to you the way we use to when I was well.  I know we can in some ways; and we must be grateful for that, and leave the rest behind.  I know you want the things that seem easy to have; romantic love, health, success.  All I can tell you is to open yourself up to it.  And yes, I know that hasn’t worked for you in the past.  Maybe it won’t work now, I don’t know.  But doing nothing, that we know reaps nothing.”

I miss you, Mom, but I hear your words.  And I will see you when I see you.


Tuesday, June 18, 2013

Watch for Him

I am having an incredibly great day today!!!!  Pain is at about a “3”.  Trying not to wait for the ax to fall (lol) because it always does.  But now?  Heaven.  The tumors are giving me a break and staying away from the nerves today.  I guess.

Yesterday wasn’t such a good day; I was in loads of pain but could not stand being shut in any longer (four days and counting) so Pam took me to the store.  I was crying from the pain on the way home, anxious to get there, and questioning my existence, which is something I do when it gets that bad.

We were driving down a quiet street when suddenly the three cars in front of us stopped.  No stop sign, no crosswalk, no people around.  Usually I get crazy when that happens (if I’m in agony) because the longer I sit, the harder it gets.  But for some reason, I just looked out my window.  And there, crossing the street oh so carefully was a family of geese.  Mom up front, four little ones and what looked like a teenager, and dad in the back.  I actually started crying from joy.

It was awesome to see, and awesome that everyone on both sides of the rode stopped and watched; no honking, no swearing, no complaining.  Just patience.  And for me, a reminder that when we need it the most, G-d shows up one way or another.  You just have to open your eyes and look.

Oh, and the Lyrica?  I'm taking it at night instead of in the morning starting today.  Talked to my doctor about it.  I'm so tired in the morning after taking it I can't stay awake.  And then I don't sleep at night.  Trying to figure out how these drugs work is a pain, pardon the pun.  Nothing great so far (today is an exception, but probably not due to the Lyrica..yet).  We shall see!

these aren't the actual geese; they wouldn't pose, the stinkers!!

Saturday, June 15, 2013

Pain Troll

Trying to keep the pain-troll at bay is like fighting a non-stop barrage of gun warfare with a sling-shot.  Or in my case, an increasing number of non-effective medicinal “remedies” that do on the whole, nothing significant.  Pills chasing patches chasing pills.  One pill to “help” another pill work more effectively.  What brilliant marketing.  The reasoning behind taking one to help another benefits (in my opinion) only one group of people; the pharmaceutical companies. 

It’s like Hallmark coming out with “Your Welcome” cards to send after someone sends you a Thank You card.  Where does it stop?  (I haven’t actually seen those, mind you, but I would not be surprised)  The doctors jump on the bandwagon and Voila!  Sales rise, but remedies remain the same.  But that’s not a problem for the drug companies to worry their little heads about. Profits, that’s the key.  The commercials tell you to watch out for little things like “suicidal thoughts or actions” and a host of other scary side effects spoken at hyper speed.   And the consumer gets on the phone to their doctor to request the magic bullet, which isn’t magical in the least.

Here’s the thing.  Millions and millions of dollars are being spent to research a cure for this or that disease or disorder but rarely are there significant breakthroughs.  Or if there are, they don’t trickle down to anyone except those that can afford them.  And there’s a reason for this.  If a cure were found for a significant number of health issues, what would happen to the doctors, nurses and hospitals that treat these health issues?  What would happen to the jobs health issues create?  And what, pray-tell, would happen to the pharmaceutical companies that tout the hundreds of thousands of pills out there?  I’m sure the lobbyists would come up with something, but you get the point.

With the exception of several drugs like antibiotics which did eradicate many horrible diseases (some of which are making a comeback; and because antibiotics have been used unnecessarily for years, they are now often ineffective) or insulin and others I am unfamiliar with, some of these drugs are about as effective as taking a tic-tac (I use that comparison for many of my “painkillers”).   It is beyond my understanding why there is nothing out there that is effective for neuropathic pain.  Enough people suffer from it in one form or another.  Isn’t it logical that something would be in development for that?   Because I’m here to tell you that Neurontin, Lyrica, Methadone, Fentanyl, Morphine and all the others I’ve tried don’t work well enough to let me roam the countryside in peaceful painlessness.  Marijuana is the ONLY thing that takes the edge off a bit.  But of course, one cannot go out and drive or even function very well on all these things.  So my couch and my bed are my only salvation.

I started the Lyrica two weeks ago and so far, nada.  Except that for the first week I was falling asleep within 30 minutes of taking it upon waking.   I suppose I could switch and take it at night; but I’m supposed to take it with the Neurontin in the morning.

And, my dad wanted to come visit me this weekend but between the pain and the worry about him getting here safely (the parking has become awful; and the whole parking lot is sloped so getting in and out of the car when you can’t move well is very challenging) I told him not to come.  He was upset at first, but we talked it out as we always do and he’s accepting it.   We all told him that he and I have to depend on others for getting us to and from each other, and both my brother and sister have busy lives;  taking a taxi is an expensive option, but one we may have to use if we want to see each other more than is reasonable for them to help.  The fact remains that I will see him more than I did when he was 1600 miles east of me.

Tuesday, June 11, 2013

Every Step

Pam walked over here today…she lives about two miles from me and said she’d walk over and I told her no, but she did anyway….and I had gone to the store for a couple things….got back and there she was!!  What an angel.  She’s working her behind off right now.  I don’t know of many people that dedicated.

My stamina is not good and I’ve been exhausted all the time.  It may be the Lyrica that I take in the morning.   I need to give it more time to see if that goes away.  I don’t want to get any less sure footed than I already am!

I have been trying to think of something I’d like to experience before I die and I’ve been having trouble with it.  If virtual reality was readily available, I’d love to try that and visit places I’ve never been to in my life.  I need to research that and see if it’s a possibility.  Some things I just don’t keep up with, and technology is one of those things.

But what I’d want most, I think, is to try hang gliding.  Of course, I could never do it alone and I don’t know if it would be like parachuting with someone.  I kind of doubt it.  But to experience “flying?”   That would be unimaginably wonderful to me!  It makes me teary just to think about it…all that freedom and the rush that must surely come with it.   I’d parachute too, if I could.  Or hot air balloon, though that wouldn’t be quite the same.  I just want to experience some things I could never do in my “brick and mortar” life.  A life on the couch.  A life watching those gorgeous hummingbirds, with their 685-1,000 heartbeats a minute, flitting around, pausing in front of the deck door to say hello to me and Oliver then dart away to the right, left, up or down.  Amazing creatures.

I feel so much closer to G-d when I think of those things and stop worrying about everything that’s out of my control. Which is everything.  It’s so much easier to accept that rather than fight it,  Every. Step. Of. The. Way.

Friday, June 7, 2013


Well, Pam’s news wasn’t good.  They misinformed her about the radiation.  Now they are talking about some invasive surgical procedure with a three week recovery.  I couldn’t understand what she was saying and I don’t know when I’ll see her again…her car is still down and out.  Man I feel awful for her.  I’ve only had three hours of services so far this month.  They got someone to help me for two more hours today, and she’ll be back tomorrow.  But it’s not the same.  It’s very difficult for me to separate my problems from Pam’s.  I care a lot about her but I wouldn’t have the help if I didn’t need it.

When everything breaks down at once; our bodies, our cars, our relationships….whatever it is, it can feel ghastly (Ted’s word….love it) out of proportion.  You feel like you’re running around with a big target on your back.  At least that’s how I feel when it happens.  And it happens with alarmingly regularity. I was talking with my (temporarily, I hope) new caregiver today (forget her name) about how time seems to move so much faster as we age.   Maybe I’ve seen a few too many movies about time and the space time continuum which seems to be a big theme in those shows, but it feels like it’s moving so fast it’s going to meet up with the past and then perhaps we’ll have another big bang.  Or maybe it’s happening all the time and we just don’t know it.   And the only way to deal with the shifting realities is to perceive it as time moving faster.  Move over Hawking, eh?   Am I right or am I right?  Lol.

The person they sent to help me is nice enough (Marti)  but since she only ferried me around so I haven’t really had a chance to see how we work together.  She’s been doing this for 12 years though, so I assume she’s good.  If I need her regularly, she only can work afternoons and that might not work for me.  We shall see.

Rain must be coming because I’m in horrible pain; have been since yesterday afternoon.  My insurance did cover the Lyrica my pain doc wanted me to try so I took my first dose this morning.  Once a day, that one.  I hope it helps the Neurontin help me.  Sheesh.

Wednesday, June 5, 2013

Pain Doc Day

Tuesday was interesting.   Pam’s car broke down Monday after she helped me.  I feel bad for her, but glad it didn’t happen before or during our trip to the U to see my pain doctor.  I had to use a taxi and it cost a fortune and took an extra half hour waiting for him to pick me up when the appointment is over.  I was in such agony by the time I got in the cab I was crying.   He looked at me in the rear-view and actually told me to try Ecstasy!  Everyone is a doctor.  He told me it took care of the pain from a motorcycle accident years ago.  I’ll take his word for it.  I gave Pam his number so she can call him for a ride to her appointment at the U on Wednesday

My real pain doctor, not the taxi driver, told me he wanted to add Lyrica, but it’s expensive and it might not be covered.  These insurance companies are nuts.  They stopped paying for the drug I used to take to keep urinary tract infections away, and that one is dirt cheap.  If I get an infection, and I will, eventually since I cath myself, it will cost a lot more for an antibiotic.  But I guess they figure one of those a few times a year is cheaper still than paying for this every month.  Who cares how the patient feels?  I take D-Mannose now, a supplement to keep things at bay, hopefully.   They have me scheduled for a brain scan next month but never mentioned it to me; I asked if I really need to put myself through that if there isn’t anything they can do anyway.  He said no.

But this is the kicker.  He cleared his throat and warned me not to get upset.  I thought, well, we haven’t done an MRI recently; it can’t be anything too horrible, can it?  He wants me to go back on very small doses of methadone.   2.5 mg three times a day to help the Fentanyl.   I said I’d think about it, but my first reaction was (in my head) just shoot me.  It took MONTHS to get off the wicked stuff and I stopped using it because it wasn’t working.  So I really have to think about it and ask more questions.  AND, I don’t really want additional gastro issues….I have a full plate already.  And not gaining weight.  But not losing, either.   I do not get it about these drugs “helping” another drug work better.  I hear that all the time now.  Where does it end?

He also said he had the name of a surgeon who could help me with the tumors in my legs that are killing me.  I can barely lift my legs to go up stairs now.  Luckily, I don’t have to do that often.  But I’m going to wait on that for a while.

Saturday, June 1, 2013


My soul feels the pain that ravages this body of mine
My ego suffers from the power I give the pain

My soul knows that pain is just pain.  Awful though it may be, it isn’t personal
My ego thinks it is both awful and personal and “I” suffer more

I just finished another drumming journey.  This time I didn’t ask a question, I just asked for help.  I got this movie-like flashback of my life…bits and pieces, some very nice some not so much.   It was really quite incredible.  I think it was meant as a reminder that I did have a life one time and wasn’t always flat on my back in pain.  Sometimes I’m grateful for that, sometimes I’m angry I’m like this now; unable to do the simplest of things like meeting with friends, going to a movie, visiting my family…especially now.  However, I have FINALLY been aware that it is completely out of my hands, and the fear and the fighting is what makes it worse.  I’ve always known that cognitively but not in my heart, not in my soul.
That is starting to change.

I mentioned to a friend that I wasn’t going to my niece’s graduation because it’s just too much.  I put myself and others in a difficult position because I end up in agony and then the focus is on me rather than the person whose life we are supposed to be celebrating.  Or whatever the situation.  I miss those family gatherings so much I’ve been selfish sometimes.  Not always.  But even saying “I wish I could be there” no matter how the statement may seem innocent, isn’t really.  I mean, there are times it’s a throwaway line; everyone says that sometimes.  For me, it’s a way of life.  My friend was thrilled that I finally am coming around to admitting my life is what it is and it can’t be changed and why put others through hell too. 

I’ve never thought of myself as doing that; I don’t request anything from anyone.  I got my disability, my DSHS help and every other thing I have, by myself.  No one helped me with anything.  It made me angry for a while because it was so damn hard.  But truth be told, they didn’t know how to do it either.  And they had their lives.

And I have mine, such as it is.  My painting.  My story. My body.  My challenges.  It’s all mine, the good and the bad.
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