Push

The tumors in my left leg are killing me.  I had at least two things I wanted to get done today but had to ax both of them.  I hope tomorrow is better because I actually have four things that need to get done and I was going for two in a day….last week I had something every day of the week.  This week….moving is not going to happen.  That’s what happens if I push too hard, like I did last week.

Vinnie, my kitty from…not sure where, is getting into everything now that he’s feeling his new “home” is safe to explore.  He was sitting in the fireplace this morning.  Luckily, I haven’t had any fires so far this season so it’s clean.  Just what I need; ash paw prints everywhere.

I’m thinking of calling my pain doc to get the name of a surgeon he had told me about a while back.  I just HATE having to see doctors, especially new ones that don’t know anything about me or my limitations due to the pain.  They just don’t get that I can’t sit for 30 minutes waiting for them to call me.   And getting there is always a challenge because my helpers can’t take me because it’s in a different county.  I’m on the border and they can’t cross over.  Some will do it anyway and report the miles but not that it was out of county.  These two won’t do that.

Wednesday:  made it to two stores, sent Hamid, my helper, to get my meds.  It’s pathetic, really.  My life feels pathetically worthless sometimes.  When I’m deep in the abyss, like I am now, I feel nothing but contempt for this world and my being in it.  It’s very hard to stay focused and positive when all my available energy goes to dealing with the pain.  Overcoming, ignoring, praying, meditating…

And the list goes while the fist goes up as I shake it at the stars that won’t move, not for me, not for anyone, not even for themselves.

I’ve been wondering about something a lot lately.  I doze on and off during the day; not sleeping but going unconscious for a few seconds or a few minutes at most.  Sometimes my brain is aware that I’ve slipped away and it becomes an out of body experience.  Everything is different for those few minutes and when I come out of it, it’s not like waking from sleep.  It’s like coming back from somewhere else.  Somewhere I can’t stay.  Not yet, anyway.  I used to have lucid dreams all the time.  Before the pills so if anyone thinks my experiences with the dead and with lucid dreaming aren’t real because of the drugs, remember it’s the drugs that killed the ability.  I never took so much as an aspirin during those years.  Maybe the skill is trying to make a comeback.

If you’re breathing, you have to keep pushing.  Those are the rules.  Damn.

Control

Control.  We all want it or think we have it.  But in reality, the only control we have is how much orange juice to pour into our glass.  And maybe not even that, given the butterfly effect.  Sigh.

I was thinking of this because while in mind-numbing pain of late, my brain goes in many directions or sometimes, in one.  And lately I have been obsessing about that case I mentioned in the post below.  No names needed.  Anyway, I was thinking about the child’s mother, and how overwhelmed she must be (to say it lightly) with everyone from lawyers to doctors to the press and the public in general.  I do not envy her her situation.  But mostly, I do not envy her for the terrible blow that has landed on her poor soul.

And I ask myself this question.  Has anyone in her life ever taken her aside, shut all doors and just ask her to tell her/him about her daughter?   No mention of tonsils, illness, hospitals, lawyers or anything that led to this horror.   Just talk with her about her beautiful daughter with the infectious smile.   Omit nothing, Have her share everything she meant to her, still means and what she had planned for herself.  Let her talk herself blue in the face, but interrupt any mention of the issues that have grabbed on and won’t let go. 

Because in the opinion, and it is only that, comes from someone that, like most people on this planet, knows deep grief of her own, though not the loss of a child,.   For me, grieving could not begin until the clouds parted and I saw my life for what it is.   Filled with intractable, non-stop physical pain as well as tons of love .For her, she must begin to see that her daughter has most likely moved on.  If not, and if you believe in such things, she too is grieving.  For her mom.   But this should not be mentioned.  No guiling, no lecturing, no comparing who is right and who is wrong (because we do not know and I doubt we will ever know much of anything though we think we do) and no talk of anything except her daughter.  The one she will love for the rest of her life.  She also has another daughter who needs her.  I cannot begin to imagine what she must be feeling.  But part of it might be some serious questions.

There was this great line toward the end of that movie “Phenomenon” with John Travolta.  He had this experience that everyone thought meant he was visited by something from outside our solar system.  In truth, he had a tumor that caused the change in him.  He of course, fell in love, and just before he died he asked the woman if she would love him for the rest of his life.  “No,” she replied “I’ll love you for the rest of mine”

Grace

Oh man, the pain has been so out of this world I can hardly breathe.  I think that losing Oliver is still hitting me over the head and hard.  I love Vinnie and he is the sweetest cat ever with lots of kitty still in him.  And I do think Oliver sent him to me but I am frightened now of the level of pain and whether I can deal with him long term.  Right now he is eating me out of house and home.    I just thought Oliver would want me to rescue another cat, like I rescued him.  And like we rescued each other.  I just thought Oliver would want me to rescue another cat, like I rescued him.  And like we rescued each other.

I’ve been thinking about all my challenges and how the worse it gets, the more opportunity to grow spiritually and show grace and dignity.  I’m at about 30% in the grace and dignity department.    And my computer is going haywire…having a hard time writing this.  Yet another opportunity!   I do not now, nor I have ever thought I had more or harder challenges than anyone else.  I am lucky in so many respects I feel ashamed to complain at all.  And yet.  But whether the challenge is ours, personally, or whether it involves a loved one, it’s all the same.  Rising to the occasion.  I just want to rise out of here sometimes!

I have been following that story about the young girl who died (brain dead) after surgery.  I had not understood the difference between coma and brain dead until now.  That poor child is not coming back to this world from what I understand about it now.   Her mother can’t let her go and removed her from the hospital (legal battles will continue I am sure) and found a place through a lawyer (of course) who took her.  Feeding tube, breathing tube, dead body.  The brain is what tells the body what to do…apparently; in addition to telling me to breathe it tells me to grow tumors.  But I digress.

I feel for her mom, I really do.  And what do we know, really, about what is to come?  Nothing.  We know nothing.  I read that her case will not set a precedent; they released her on the condition that it read they were releasing a corpse.  This is so sad it hurts me to read and write about it.   I do so because again, our challenges are for us.  That little girl is done with her challenges on Earth.  Her mother is not.  I pray she can let her daughter go.  She will have to, and soon.  I just want her to be at peace.

And Here Comes....Vinnie!

Just a short hello from the guy Oliver sent to me....his name is Vinnie and he's exploring and yelling and eating and playing and even got into my lap long enough for me to snap this picture.   He loves catnip (and I'm almost out) and he discovered the hummingbirds.  He has a strange vocalization....like a smoker.  Gravel.

Oliver is still by my side....helping me help the two year old Vinnie.  Oh, they estimate his DOB to be /January 4, 2012 so he just turned two...of course, that's a guesstiment.

I really needed this heartbeat.   And I was mourning Oliver for a long time before he passed.  He has helped me through so much.   Vinnie is about to knock over a lamp.  What have I done!!!!!

lol

Vinnie

Truth be told, I’d been preparing myself mentally for Oliver’s passing for a long time….at least a couple of months.  I felt it in my bones.  While he ate normally, he slept more and was rail thin, kind of like me.  The more he ate, the more he seemed to lose.  And he groomed himself non-stop, though I will never know why.  I write this because a woman who works for a shelter was in touch with me about a cat I was interested in.  The cat was being fostered, and the rules around that are even stranger than the rules around adoption, which I’ll explain.  At any rate, I explained about my mobility limitations without drama or any mention of NF.

I know how selfish this must sound; being ill and needing help I probably shouldn't adopt another animal....I actually told myself Oliver would be the last.....I just loved him so much and feel I still have it to give another abandoned kitty.

 Of course she didn’t understand when I said pain made it hard for me to travel.  I requested that she email pictures of cats that meet my qualifications, and when there was a fit, perhaps instead of taking me there (which they have to do; you can’t just go to someone’s home who is fostering…you must be escorted) that she bring the cat to me and I’d pay cash.  But she shot it down because they have to see if we bond.  I understand that.  Should bring super glue with me next time.  Anyway, she told me I “wasn’t done grieving” and I just thanked her and let it go.

So a good email friend of mine named Carolyn reminded me that I had been grieving for months and his death was the end of most of that grief.  Except of course, for the emptiness.  Cat lady couldn’t have known that, although to her credit, she visited my blog because it’s at the bottom of my email.  I never mentioned it to her.  We agreed to wait, though I just kept on looking and today, visiting, potential matches.  It’s like dating.  Anyway, it would require too much energy to explain and no need, and I don’t want to be on a soapbox.  She was doing what she thought was right, and she was doing her job well and I respect that.  She was just wrong about me.  But that’s okay; I can’t let those things upset me, especially when I’m in the kind of pain I’ve been in recently.  Today was awful, pain wise.

However, friend- wise and cat wise it was a pretty good day!  A friend called to say today was “Kitty Day” and she was coming over to schlep me to the shelter!  She had promised that the day Oliver passed, but I must have forgotten.  And she is the one who brought me a big stuffed bear; another friend brought me a cute stuffed kitty.  I am blessed.

So she comes over, we go there and I had a few cats in mind that I so online  None of those were available for some reason, but suddenly I saw this adorable black and white cat who was a little young (2) and not quite ready for adoption.  He’s being fixed on Monday and will be available Tuesday.  But here’s the thing.  I could fill out the paperwork, but not put a hold on Vinnie (his name).  You can’t do that until they are deemed “adoptable” which should be Tuesday.  But I have to get back there and spend time bonding with him before I can either adopt him or put him on hold for 24 hours.  I explained my mobility issues but it doesn’t matter.

My problem is their hours.  They open at 11 and you have to have the adoption done by 3:30 because they close at 4.   My helpers leave at 12 (well, Tuesday and Thursday I have until 1 but technically, they aren’t supposed to help me with my pet…don’t even ask).  And of course, my friends all work.  I got another offer for a ride from a friend of a friend, so I’m hoping that still stands and it will be a go by Tuesday or Wednesday.  But without the hold, which I can’t get until I’ve bonded with him, anyone else could pop in before me and adopt him.  It’s twisted.  They wrote that I was “interested” on his paperwork, but that means nothing.

I’m hoping for the best.  One way or another, I’ll have a cat soon, I hope.  It was hard because part of me wanted to keep looking when I heard I could not take him today.  But then I realized that if Vinnie is the one, I should do everything I can to adopt him.  No pics yet; don’t know when, I don’t own a camera.  However, my home is kitty ready….litter, food, new carrier, new litter box….I hope its Vinnie and I hope he’s happy here.  And I hope I’m doing the right thing.

I “asked” Oliver and he gave me four paws up!  I still worry I may be taking on too much.  But I need the companionship and my dad is really encouraging me to forge ahead.  He’s a wise man.

Hopefully, I’ll know more soon.  I still see Oliver around the corner and out of the corner of my eyes.  I’m waiting to find a big depression on my side of the bed where he liked to sleep (which I solved by putting pillows there) but I moved them back where pillows belong, hoping to see a glimpse of him.  Don’t get me wrong.  I am NOT replacing him    But he “told “ me to save another kitty and give him a good home.  Will do, Oliver, my special  BFF!!

Oliver's Passing

I had to put Oliver down this morning.  He got sick very suddenly and I took him to the vet yesterday.  He had sudden abdominal pain.  Didn’t eat or drink for 24 hours.  They could have kept him for a few days (but that would have stressed him out) to do diagnostics, but she was quoting thousands of dollars just to find out what was wrong, let alone treat.  If he were younger, I may have considered it.  But he was 19.  He didn't come out from under the bad for 24 hours and was whimpering even with pain medication.       I lost two friends since April.  Ted and Oliver.  He had been curling up next to my ear for the last several days, purring in my ear.  He was trying to tell me something...he had lost weight and was dehydrated.  I feel awful for not seeing it sooner.

 I’m re-posting this is his honor.

Oliver's Outing

I named Oliver, my cat, for Joe Oliver, who played short-stop for the Seattle Mariners one season.  I was told later to never name your pets after players due to the fickle factor. Better to name them for a ballpark.  I don’t know, maybe it’s just me, but Safeco seemed undignified for him and every other animal on the planet, domesticated or otherwise.  I’m not even sure if Safeco is a good name for a ballpark.  At any rate, since Oliver was also a famous orphan, I figured the name suited him.  I rescued him from an animal shelter after he had been caught roaming Bell Town, a distinctly unwise part of town to roam for cat and human alike.

We fell in love instantly.  He, with his sleek gray/black tiger-like markings, loving disposition, emerald green eyes, and me, with my bowl of food.  Don’t let him fool you. In spite of his tough-guy look, he is no longer one to trip the light fantastic.  And since we now are best buddies, I would naturally know if something were wrong.  You know, little things only a mom would notice, like pee on the bathroom floor. It happens very infrequently, but since male cats can die soon after becoming ill with a urinary tract infection, I brought him in for a checkup just to be sure, and $80 later found out that he was fine. They put him back in his carrier, which was just one of those cheap cardboard jobs.  However, if put together correctly, they work just fine.  At least, it had always worked for me.

Well, it wasn’t put together correctly, which I didn’t notice until the unthinkable happen.  I walked outside, opened my car door, and bam!  He broke out of the side of the box and made a mad dash under my car.   Heart racing, I ran into the clinic yelling for help.  More concerned about me than the cat, three people immediately responded and at that point, Oliver was still within catching distance.  But not for long.

Realizing he was being chased, he darted around the corner and down (luckily) the quieter of two streets.  The main street would have killed him instantly.  He continued to foil all of us, and eventually ran into a someone’s wooded backyard which was full of all sorts of places a cat could hide in fear or have a good time, depending on the kitty’s point of view.  There was a reflecting pond, plenty of foliage, shrubbery, trees, fencing and little statuettes.  Behind their property, there were more trees, more houses with more shrubbery.  Mother nature was everywhere — paradise compared to the little apartment I live in with just a few trees to gaze at from the top of my couch.  Heck, I wanted to live there.

I figured he had found Nirvana.  I figured I would never see him again.  I figured I would throw a rock through the window of the vet clinic at 3 the next morning for not securing his carrier.  Man, I was stressing, screaming at all the people from the clinic, telling them it was their fault.  I had gone mad. 

Luckily, the people who lived in the house where Oliver ran were the nicest people on Earth.  They let me hang out at their house for many hours that evening, and 13 hours the next day.  Carol, the woman of the house, brought food and water out to me and let me join the family for dinner that first night.  She crouched behind fences and darted through the woods as if it were her own dog, Stanley, who was missing.  In fact, she kept Stanley, a bulldog, in the house the whole next day which couldn’t have been easy for Stanley. 

My spinal tumors and subsequent pain make traipsing through the woods unwise, so I spent most of the time just laying flat on a little patch of lawn, bits of kibble on my chest, calling plaintively for the elusive Oliver.    I caught a glimpse of him early the next morning and was within grabbing distance, but he would have none of it.  Later that day, he was literally eating out of my hand but was still fairly freaked and wouldn’t let me touch him.  I cried. Hard. I sobbed, screamed, cursed and generally bawled  myself to sleep that night. 

I got up at 4 a.m. the next day and a very, very dedicated friend picked me up at 4:30 to go back to the scene of the crime.  The people at the vet had recommended I come at dawn, stating with authority that he would come only to me. The night before, they suggested I leave my T-shirt (luckily, I had a sweatshirt on over it) with my scent and he would come for sure.  They pretty much kept telling me he would come.  He didn’t come. In fact, after two hours that pre-dawn day I hadn’t spotted him at all, and left for home, dejected, sad and exhausted, saying a prayer and leaving an offering of a chewed-up, soggy, cat-nip filled mouse.  Earlier, the people at the vet clinic put up signs everywhere, and brought over protective gloves for me to wear once I found him, warning me not to let Oliver see them or he’d get scared.  Hello?  Who am I, Doug Henning? 

Finally, around 5 p.m. the third day, just when I had mentally let him go, sending a prayer that he’d be safe, the vet called telling me he had been found by a neighbor.  It had been over 48 hours, and Christina, the neighbor was able to cage him.  I figured he was so exhausted, he didn’t care who caught him. I was glad I had spent so much time introducing myself to everyone in the neighborhood and basically being a pest.  EVERYONE knew who he was by the time he was caught.  He was exhausted, dehydrated, wheezing, but basically okay and I think, happy to be home.  But that’s my point of view.  Of course, by the look he was giving me, I could only assume he had thoughts of his own:

Where have you been, you idiot?  Man, there I was, minding my own business, when suddenly I was scooped up and thrown into a cardboard box posing as a cat carrier.  And all because I peed on the bathroom floor instead of my litter box.  At least it was in the bathroom  Geeze, you’d think I had threatened you with an Uzi.  But no, you totally freak out and decide I need medical attention, taking me to this stranger who stuck something up me to extract urine and test it for who knows what.  It hurt.  I only weigh 12 pounds.   I am tiny and I was scared.  I meowed really loud to let you know but you didn’t care, you just let those mean people do their thing. 

And then they didn’t even close my carrier (if you could call a cardboard box a carrier) correctly and you were too stupid and too trusting not to double check so of course, I did whatever any red-blooded kitty would do.  I bolted in fear.  I didn’t know what I was doing, I was in survival mode.  I ran and four people, one with a net, came chasing after me. What would you do if someone with a white coat and a net came chasing after you? 

I ran into all these trees behind some strangers lawn.  It was real pretty back there, but very scary.  There were crows, squirrels, strange cats and all sorts of other unknown creatures.  I ran up a tree and stayed there late into the night, until the coast was clear.  I came out and no one was around, so I skulked around looking for food and water. I was really scared, hungry and thirsty.  And you, my owner, the person who supposedly loves me, apparently went home for the night. What the heck, you could always get another cat.  Me, on the other hand, could only hope to be found by someone who would take pity on me, feed me, and with any luck, take me in. 

Incidentally, the water in that stupid reflecting pool you think is so pretty is filthy.  I would never in a zillion years drink out of it.  If I did, I’d probably get parasites.. But hey, don’t worry about me.  My toys were no where to be found, my litter box gone too.  I had to poop and pee in the great outdoors, but I was so scared, I could hardly go. I realized I  was now thoroughly domesticated.  How embarrassing.  You finally came back the next day and chased me with some other strange woman, and now I was really freaked. 

You were acting like a nut, crying and screaming, sobbing and calling my name.  I figured you had lost your mind, and was trying to decide if maybe life wouldn’t be better away from your craziness.  But, I missed my food, my clean water, my warm sleeping place and my litter box.  Still, you were freaking me out, so I hid a second day, till finally I was so tired, hungry and thirsty, I dragged my ragged and beaten body up on a nice lady’s porch and she put me in a carrier and took me back to the vet, where you finally showed up.  Geeze, what was the big deal? 

Can’t a guy go on vacation for a couple of days?  Okay, okay,  once I was home I got brave.  I never want to go through that again.  Of course, minutes after I was safe at home I cried at the screen door to go out.  I can’t help it, my brain is the size of a filbert. Humans are the ones who wanted us for household pets.  We don’t know how to survive out there anymore, and it’s your fault.  Now I still can’t pee right.  I’m afraid of my litter box.  But I figure if I act a little crazy you will worry about me, give me special treats, and I can stretch this out for a long time. You are so easy to manipulate it’s frightening.  I have always wanted to see Egypt, the birthplace of my ancestors.  Maybe I’ll go there next time.  Anyone know where I can get a cheap flight?


Stray Cat Strut

Trampoline

My body is a playground for the pain today.  It’s bouncing up and down my legs and has turned me into a backyard trampoline.  Oh well.  I was reading this article online at CNN about people who have overcome challenges and found their calling.  One of the people was Noah Levine, who is the son of one of my favorite writers on meditation, Stephen Levine.

Another featured participant was this woman whose calling is communicating with the other side.  She makes 1,000 bucks an hour helping people.   I don’t deny her a living, but something about it makes me think “charlatan” even though she might be perfectly legitimate.  There are so many of the “take the money and run” kind of authors on this subject, I guess I feel mad and a bit jealous because before I started taking all this crap for the pain, I could do that as well.  Really.  I’ve written about it here…”My First Encounter” I think was the name of it.  I have that search engine on my site but I used it to find something the other day and the thing I was looking for didn’t pop up.

At any rate, I still can do it just for myself; I communicate regularly with people who have passed.  Not as actually voices, just as thoughts that belong to them.  And no, I’m not crazy.  They aren’t actual voices and no one tells me to hurt myself or anyone else.  In fact, if anything, they keep me grounded.   That’s not to say I’m not challenged, for I am, big time.  I just peek into the abyss and occasionally sit at its edge, feet tangling inside as I peer down.  But I’m not jumping.  Not yet.

My nephew was just here and showed me great pics that he took in Belize with his parents and sister.  I want a virtual reality headset so I can visit all these places…as well as Paris, Rome, etc.  Sigh.  Perhaps it will be available before I check out.

But not today.  A friend called but I’m in too much pain to have anyone else over today.   I hate saying no to people, but I’m normally not much fun….today I’m really wiped.   And the backs of my knees feel like knives are stuck in them.

Back to breathing…one second at a time…no past, no future, just now, now and now.

Still Here

My gastrointestinal problems have resurfaced with a vengeance.  It had settled for a while; but apparently, I have been eating too much, which my normal standards, is not enough.  But my belly can’t handle too much of anything.  I’m also in a fair amount of pain today.  And I can’t believe its Christmas the day after tomorrow.  I miss talking to Ted.  It’s been nine months since he passed and I still think about him a lot.  We shared so much; our pain, our challenges, our stories….sometimes with a heavy heart, sometimes laughing ourselves sick at our situation.   I’m glad his trial is over.  He hated this time of year.

What can I write that I haven’t already?   The abyss starts to close in and panic ensues. I need to find a way to stave it off.  How to walk away from it instead of around it.  How to find peace where none exists.  It’s a challenge.  Mornings are the hardest, especially this time of year.  Our shortest, darkest day just passed, but it will be a while before there is more light than dark during the day.  Living in this dark, wet, dreary climate isn’t the best of choices, but I’m not going anywhere at this stage.

Anyway…..Happy Holidays to you all…

Bumps of Beauty

I decided to re post this after reading an article about a young woman in Nova Scotia, Canada with NF.  She had a facial reconstruction and it will be on a station that I unfortunately, do not get.  I searched in my own blog for this post and could not find it, so I'm re posting it in her honor.  Sarah, you go girl!! (she bravely made an online video of the bullying she endures)

Bumps of Beauty

Airbrushed beauty beaming up from the pages of magazines and down at us from billboards marching proudly on our city streets, brightly lit at night so that we won’t miss the larger-than-life smiles filled with too-white teeth, straight as the light bulbs that shine on them, the abundant, radiant hair that glimmers too, the creamy white, black or brown skin flawless and blemish-free even though we know it’s not true, we believe it so we buy the soap, the toothpaste, the clothes and once upon a time, the cigarettes but that’s all over why is there not a law against the rest of it?  We know it’s not true, because we see each other on the streets, in the workplace and at school every day and we see the imperfections we are all born with save the few who make it to the pages of those magazines who still, even with the born perfections, must have more perfection airbrushed into the lines and creases to make sure that perfection doesn’t get by us mere mortals.

We know it’s not true, as we stare into the plate-glass windows of the stores that hold our fondest wishes; the things we covet and believe we can’t live without yet behold!  We still live. The things just out of reach but will never be ours and even if we get them they somehow leave us feeling empty which should be a lesson.  As small children we played in and around the boxes that held the toys rather than with the toys themselves but then of course, we got older and that wasn’t enough and the airbrushed bodies that hold the goodies we now want but most times cannot have start to look good, so we begin to covet them and continue to do so forever unless we learn it’s not true, oh my.

We know it’s not true when we are born with the most imperfect bodies even more imperfect than the normal overweight, blemished, lopsided smile, crooked-nosed, large-jawed, legs to short, arms too long, hair not right, neck to long, butt to big human being.  And here we are, with bumps that cover our bodies in numbers too many to count that send us into the shadows in shame or to the operating table alongside the ones with the tumors inside, large and small that run up and down our legs and arms, in our chests, our organs or crawl up our spines leaving us in mind-numbing pain or confined to our wheelchairs or beds far away from the billboards of beauty.  But it’s okay, because we know it’s not true.

And if that’s not enough there are those who can’t walk, can’t see, can’t hear but miraculously, somehow, overcome all those obstacles and emerge more whole than the airbrushed beauties the smart ones know to ignore.

What a miracle it is to be born whole and how unlikely is it, really, for that to happen given all that could go wrong in the cell dividing process of becoming human.  The culprit, thanks to science is identified in genes 17 and 22 on that ladder of life, DNA.  That twisting, turning  Escher-like double helix , the tell-tale spell binding truth of who we are, what we are likely to become. 

We wait for the time-bomb of our NF to go off; will it be soon, while we are young? or will it skulk around in our bodies, dashing about or hiding behind organs, tissues, nerve-endings, tiny, meaningless until — until something, who knows what, ticks it off and poof! they grow, these tumors, these parasites, pushing about like bullies on the playground, growing faster, bigger then the rest of whatever else is in there and soon, like the bully, it pushes on the nerve-endings too much and the host body is racked with pain as the doctors scratch their collective heads wondering what in the world is wrong, have you seen a psychiatrist?  An MRI? Well, okay and we slide into the cigar-like tube with earplugs to dull the sound of the thud-thud-thudding and the cluck-cluck-clucking like the coconuts used to make the sound of horses running in  Monty Python’s Flying Circus. I laughed so hard in the first of my 30 or so MRI's that they had to stop and start again but it turned out not be funny at all. 

So my first surgery was at 40 which is late, so I’m told and according to that first MRI at age 36 when there were so many tumors one neurologist who didn’t know me assumed I was in a nursing home but was, miraculously, living my life just fine thank you. So this was quite the shock to learn that I could be paralyzed from the neck down if I didn’t have the surgery and maybe even if I did.  It all depended on if the tumor was sitting there like a grape or wrapped around the nerves (which wouldn’t be good) but it was like a grape and I am not paralyzed though sometimes with fear, I am.

 So now it’s back, the pain though this time in my lumbar spine and the pills I am on to stop the pain could put out my entire apartment complex though my body has become accustom to them and they practically don’t work, which means trying different pills oh heavens this is too much I just want to be normal, whatever the heck that is.

Somewhere in our hearts we know it’s not true, all the hubbub at the Oscars, the Emmys the Grammy’s, all that glitter and perfection all gathered together so we can gawk and wish we were there, or them or both.  If this NF of ours teaches us anything it should teach us that it is not true; not the billboards, magazines, movies, television, awards — none of it.  None of it is true.  We are true.  We with our imperfections, our bumps, our tumors, our disfigurements teach us this truth.  We are the truth because one must search deeper to find our beauty and any treasure hunter will tell you that the find  makes the dig worth it.

Patch Me If You Can

I haven’t slept at all for two nights.   Don’t know why.  And yesterday was horrible pain wise….and this has never happened, but I had it in my head my patch day was Sunday, but it was Saturday.  I went five hours past the time I was supposed to change it.  Boy, I found out the hard way what happens when you don’t change it on time.  I have all these safeguards in so that won’t happen, and it never has; I write it down, I put the patch in the bathroom the night before….but somehow, I missed it all.  I’ll have to now program a reminder in my computer so it pops up. 

In the meantime, my left eye is twitching, my hip is throbbing, my stomach is growling and my head is spinning.  It’s very entertaining: twitching, throbbing, growling and spinning.  A real carnival on the couch.  I almost got up in the middle of the night to write something that was on my mind but I wanted to give sleep a chance.  And now, of course, I have no clue as to what it was that seemed so important at 3 a.m.   Reminds me of the time when I smoked weed recreationally and we always thought we had such profound thoughts….then we’d write them down and in the morning, what we thought was so insightful were musings about the color orange. Oh well.

I actually attempted to do something I’ve always wanted to do when the pain reaches the stratosphere.  And that is, separate my body from my mind to see if the pain lessens.  It worked a tiny bit, but forgetting to put on a new patch for just over five hours probably was the reason it didn’t work very well.  I will attempt it again when it gets bad.  It’s scary for me to do because I sometimes fear I won’t be able to get back.  But the drumming exercise works because the drumbeat changes at the end of 30 minutes and draws you back.

That experience of forgetting was frightening because of how quickly I started going into withdrawal.  I will NEVER be able to get off this merry go round.