Vanity Fail

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(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful medical condition known to man.)

I haven’t written a blog post in a while (thanks to those of you who noticed) and I figured it was time to get back in the ol’ blogging saddle.  Some interesting things have happened since I last wrote.  For starters, I lost my vanity.  And by vanity, I’m talking about the personality trait, not the cabinet in the bathroom.  I didn’t lose all of it, but I lost most.  Okay, not most, but some.

To explain why this happened, I have to tell you about what’s been going on the last five months or so in a section of this post that could have the alternate title of “How I Spent My Summer Vacation”.  See that picture up there?  That’s how I envisioned my summer vacation.  Me, in a pretty dress, walking along the sun-dappled streets of the city.  Yes, that’s a picture of a super model in a designer frock walking in Milan, but it was my vision and visions tend to err on the fabulous side.  I actually got a good start.  After many years in the suburbs, I found a great apartment in Chicago.  It’s closer to family, heck, it’s closer to a lot of things than my former place which was tucked in the middle of nowhere.  I felt pretty good about the way things were going, which, as my blog’s name implies, always means the other shoe is going to drop.  And drop it did.

Hopefully, I can write this part of the story with some brevity.  It all started with a case of hives.  I’ve had them before and didn’t think anything of it.  I went to the Urgent Care place, got my five-day pack of steroids and was on my way.  In this instance, “on my way” turned into a fever spiking up to over 104 degrees, chills that mirrored convulsions, two weeks in the hospital and more blood drawn, biopsies and MRIs than most people will have in their lifetime.  I was quite a celebrity at the hospital for a while because no one could quite pinpoint what was wrong.  Doctors would glide in and out tell me their specialty – Hematology, Infectious Disease, Surgery, etc. – then float back out writing instructions for more tests to challenge my fever-ravaged body.  (There’s a Portillo’s across the street from the hospital, so I did get frequent chocolate malts from my dad, which was a welcome upside.)  The ultimate diagnosis?  Something called Still’s Disease – an autoimmune/rheumotological condition that affects the bones and joints, causes the rash and has the dangerous potential for one’s temperature to go from normal to boiling in a matter of minutes.  As if having one rare, incurable, sometimes debilitating disease wasn’t enough, I now have two.

And here’s where the vanity part comes in.  The treatment for my new condition is a combination of yet more drugs, in addition to the plethora I already take for TN.  And, as usual, they come with side effects.  I am now taking steroids daily, meaning I have ballooned up like a puffer fish, complete with “moon face” effect and twenty pounds gained in about six weeks.  And, in order to stay on as low a dose of steroids as possible without my liver exploding, I am taking a chemotherapy drug weekly – or rather weakly – as it has sapped me of most of my energy.  Oh, and my hair is getting thinner, which is exactly what you want to have happen while your face is getting fatter.  Right?  The overall impact of this situation has essentially eroded my willingness to care how I look about 70% of the time.  It just doesn’t matter.  I roll out of bed, smooth my hair down as much as possible, brush my teeth, wash my face (maybe) and am on my way, usually in stretchy pants and big t-shirts that support my expanding self.  Oh, I do shower (maybe) but I do that at night because on many days, the thought of blowdrying my hair is more energy than I can expend.

Here’s the thing…it’s actually kind of great.  I’m not saying that I’ve completely given up. I’m trying to offset the plumping with healthier eating.  I clean up when appropriate.  But if it’s just a lay-about day, or maybe one where all I need to do is run to the grocery store, my new mantra is “Fuck it”.  And I kind of love that.  And honestly, I’ve realized that people don’t really stare at me as much as I expected.  Some do, but they probably stared at me before.  That’s not because I’m gorgeous.  Back before I bulked up, I was a solid 7 on a really good day, something I came to terms with long ago.  I just dress a little punky for someone my age.  Contrary to my disheveled appearance, I’ve actually become friendlier.   I talk to people at the store, say  “good morning” to people on the street, all while looking a way that would never be acceptable to me before.  They may be thinking, “who is this fat-faced, scraggly haired woman in a black leather jacket and why is she talking to me,” but it just doesn’t matter.

I know I’ll care at some point but for now, I’m just gonna roll with it.  Or rather “rolls” with it, as in the ones I have on my newly ample chin.  And, now I can add I’m adding a new audience to my blog – my fellow “Dragon Slayers” of the Still’s Disease community. Welcome to my blog.  So sorry you’re here.

(If you’d like to read my blog from the beginning, here’s a link.  Although I write about having Trigeminal Neuralgia, you may find you are kindred spirits of the TN “Warrior” community.)

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A Place In This World

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(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia  – the most painful medical condition known to man.)

I just returned from an extended stay at my dad’s house in Florida.  I went there for several reasons.  I wanted to provide some company for my father, who is having difficulty getting around due to knee problems.  I wanted a change of scenery.  I wanted to find a place where maybe my pain would be a little better.

I was two out of three.  My pain remained the same.  Chicago may have blustery winds and sub-zero temperatures that are hard for someone with TN, but the ever-passing fronts of weather in Florida doesn’t do us any favors.  However, it’s a lot nicer being in pain in seventy degrees than in seventeen.

I had a little trepidation about returning home.  One thing I realized many years ago is that I don’t really get too attached to any particular place.  I’m sort of a “wherever I hang my hat” kind of person.  I quickly got acclimated to my dad’s place without feeling like it was some foreign locale.  I was like that when I used to travel for business as well.  Once my clothes are in the closet, my pillows are arranged how I like them and a quick coming up to speed on the TV channels is complete, I’m pretty much at home.

But this time was different.  Returning to my little apartment wasn’t bad.  I like my place, although it’s getting too expensive to live here.  It has a good sized kitchen and more closet space than I’ll probably find when looking for a new home.  And closet space is of paramount importance.  My view is of a forest preserve, which is not only pretty but provides the safety of knowing no one can peer in my windows.  I vacuum naked sometimes.

My anxiety about returning to my place is that I really don’t understand what my place is these days.  Being unable to work has left me somewhat at sea with regard to who I am in the grand scheme of things.  I think for me that’s one of the biggest challenges with having a chronic illness.  What is there that provides me some personal sustenance?   I know I’m a good daughter and a good sister but beyond that, what can I grab onto that makes me feel I’m a part of the world?  That was a rhetorical question, please don’t send me recommendations.  This is the question only I can answer and as we transition from winter to spring, it is my goal.  I want to blossom forth with a new direction, a path, a plan to find my place.  Maybe it will be volunteering or attempting a part-time job (although honestly, I wouldn’t hire me).  Or maybe I’ll meet a special someone who will spark in me the momentum to move forward.  Don’t get me wrong, I do not think a romantic interest should ever constitute someone’s whole world or identity.  I’m just saying that finding someone supportive might influence me to be more assertive in my quest.  I would want someone to be proud of me, and laying on the sofa all day isn’t too impressive.

See that picture up there?  That is the closest representation I could find of my imaginary “happy place” – a type of calming image that therapists often recommend to help people deal with stress.  It reminds me of when I was in nursery school where there was a big goldenrod field that we would run through during recess.  I find myself thinking a lot about my happy place these days.  Oh, not the goldenrod one, but a more personal one. One that brings me back to when I didn’t have constant pain.  And one that I hope opens up in me the pathway to a happy place that is more steeped in reality than imagination.   In the meantime, I’m just going to keep looking at that picture.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

It’s The Little Things

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(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia  – the most painful medical condition known to man.)

Okay, it’s not just the little things, it’s the big things, too.

When you have a condition like Trigeminal Neuralgia, there are a lot of significant changes that happen.  In my case, I had to give up my career.  Relationships with my friends changed.  My family has rallied around me, yet there are times when I still know that they don’t “get it” (and I can’t blame them).  And of course there is the constant, sometimes excruciating pain.

But once you settle in with life as a TNer, you also notice the little things that once were so easy or enjoyable that become completely different.  Here are my Top 5 things that used to be simple pleasures but now totally suck:

Jammie/Shower/Jammie Days – These are those days, most often on Sunday, when I would wake up, bum around a little, watch football and make sauce.  Around three o’clock in the afternoon, which in my case came after the Bears had been humiliated, I would take off my jammies, take a shower, and put fresh jammies on for the evening.  When I was working, these days were an indulgence.  I felt no guilt or low self esteem on these days.  But now, many days are jammie/shower/jammie days and if I’m really being honest, there are days when the “shower” portion doesn’t even happen.  Now they are a reminder of the days I used to have at work or doing something meaningful that made jammie/shower/jammie days so special.  Now they just feel icky.

Gloomy Days – I live in Northern Illinois, we get our fair share of gloomy days in the winter.  Those are not on my Top 5 list.  But every now and then in say June or September, a rainy day would come along to kind of break things up a bit.  If I was lucky and didn’t have to work, gloomy days became jammie/shower/jammie days, where there was no better place to be than lying on the sofa, maybe with a good book, listening to the rain.  Now gloomy days are taxing both mentally and physically.  One unfortunate by-product of TN for me is that I can predict the weather with my face.  And nothing amps up the pain more than low clouds and rain.

Jumpng In The Shower – Okay, I don’t mean actually jumping up and down while in the shower, rather, just hopping into the shower without even thinking about it.  Now every movement must be planned so that the water doesn’t hit my face.  The water must be at the optimal temperature regardless of whether I’m trying to warm up in winter or cool down in summer.  I know several women with TN who have cut their hair short to avoid the risk of using a blow dryer.  I have kept mine long because for me, it’s much easier to put my hair in a ponytail than to try and wrangle with bedhead if I need to run out without showering first.

Sweaters – “Sweaters?” your thinking.  “Really?”  Yes.  I am a sweater girl. I love sweaters.  I look forward to those first days in Fall when I scour my collection for the first sweater of the season.  The problem is that now putting on a sweater, especially one with a turtle neck, can cause my pain to flare.  I now have many sweaters where the neckline is so stretched out from my pulling on it to make it looser for when it goes over my head that I look like I have a turkey neck.  (Okay, I’m totally blaming TN and the sweater thing for a neck situation that would probably be there anyway due to my, ahem, maturity.)

Driving – I do so love driving, always have, but an important part of my driving pleasure has been taken from me by TN.  It is the windows down, radio blaring tradition of driving.  I can still blast the radio, and I do, but it just sounds different with the windows up.  And having the wind blow on my face is enough to make me distracted and while I tend to be a leadfoot, I consider myself to be a very conscientious driver.

There are many more simple things I could list but I’ve been struggling with writing lately.  I have about ten blog posts that remain in draft form because I lose focus as the brain fog thickens and I can’t finish them.  Like I said, it’s the little things.

 

Can Anybody Hear Us?

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I’m a pragmatic person.  Generally speaking, I think I’m pretty reasonable when it comes to expectations. Actually, I tend to “aim low” in terms of expectations.  It minimizes disappointment.

But here’s the thing, every day a TV commercial pops up for a new medication. I realize that medical conditions, like many things in our society, are commoditized.  It’s the law of supply and demand, so when you are affected by something rare, you aren’t gonna be somebody’s cash cow.  That doesn’t make it any less frustrating though.  Of course, I wouldn’t want to take precious dollars away from treatments for cancer or diabetes or Alzheimer’s or any destructive disease that impacts (way too) many people.  But when I see an ad for toenail fungus medication I get pretty pissed off.  And if I’m being really honest, the erectile dysfunction commercials annoy me as well.  Granted, I’d be pretty bummed out if I had toenail fungus, but come on?  As to E.D., well you know that there are armies of research doctors spending millions of man-hours on that one.  (And yes, I used “man-hours” on purpose.)

The thing is, Trigeminal Neuralgia, or any of the “algias” are so damn devastating.  And while the term “Suicide Disease” was coined in days past when there were no treatments for TN, it still takes people’s lives.  Much as I want to downplay that name, some of us TN Warriors get to a point where they can’t take it anymore.  It is a tragic and catastrophic decision that destroys everyone in its wake.  And TN takes our lives in other ways.  Okay, not to the extent of a terminal illness, but differently.  We have to stop working.  We can’t be the parent or spouse or sibling we want to be.  We see our social circles shrink.  Our health deteriorates physically and mentally.  It’s the end of the world as we know it.

There are entities that do serve the Trigeminal Neuralgia community, most notably the Facial Pain Association, and I know there are dedicated research scientists trying to find a cure.  I just can’t help but feel that it’s not enough.  I mean, TN is considered to be the most painful medical diagnosis known to man.  You would think there would be more doctors trying to take on that challenge.

Imagine this scenario: You’re a research physician at a cocktail party making small talk with some other people.

Person 1:  “So, what do you all do for a living?’

Person 2: “I’m an accountant.”

Person 3:  “I’m a graphic designer.”

You:  “I just cured the most painful medical diagnosis known to man.”

Aaaaaand… mic drop.

Seriously, why wouldn’t any doctor like that to be his/her legacy?

*Sigh*  I wish there was a way for me to get famous so that I could be the advocate we all need to spread awareness.  (Trust me, this blog ain’t gonna be that ticket.)  Hopefully one day soon someone will take up the cause of TN in a big way.  Until then, I guess I should just be happy that I’ll never have to worry about toenail fungus.

 

 

 

A Difficulty With Words

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(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful medical condition known to man.)

Question:  What’s the most difficult word in the English language?

Answer:  No.

A little background.  I lammed it out of Chicago and am now at my dad’s house in Florida.  I can’t say that it has helped with the pain too much (i.e. I’m miserable).  But if I’m going to be in pain, better it be someplace warm.  My uncle is also here visiting.  My dad owns a small plot of land that we call “the farm”.  It’s on the outside of town and right now, a homeless friend of my dad has kind of homesteaded the place and has created a little camp site (that’s another story entirely).  Yesterday my dad and uncle were going to go out and check on things which prompted this conversation:

Dad:  “Hey Sal (me), you want to go out to the farm with us?”

Me:  “I don’t think so.  It’s way too windy for me to be standing in the middle of a field.  I’ll just stay here and write.”

Dad:  “You sure?  It doesn’t look too bad out.  And if you’re in pain, we’ll leave right away.”

Which gets me to my point.  I think many of us try to be polite and not make waves or seem too harsh.  I should’ve just said, “No,” but I didn’t want to be rude, and I felt I had to provide some explanation.  And even that was somewhat tempered.  What I could’ve said was, “No.  Right now I feel as if a giant claw has clamped onto my face like in one of those vending machines at Denny’s where you can win a stuffed animal.”

Wait.  Even that’s not right.  I should’ve just said, “No.”

For such a small word, “no” seems to be one whose definition is better in theory than in the real world, especially when you have a chronic illness.  You, the affected, feel like just saying a simple, “No,” or actually, “No, thank you,” is an insult to the asking party.  That party, in this case Dad, thinks that “No, thank you,” actually means, “Well, I might go if you keep giving me reasons why you don’t think it will be a problem.”

And so we dance.  Me, restating my concerns over and over again using different words.  And Dad, continuing to give me reasons why I shouldn’t be concerned.

Though I know my dad cares about how I’m feeling and doesn’t want me to get worse, he clearly doesn’t understand.  He doesn’t understand that even on reasonably good days I am in more pain than I outwardly show.  He doesn’t know that when you have TN you are constantly assessing your surroundings for possible pain triggers.  He doesn’t realize that having to “prove” why I don’t want to do something makes me feel as if he doesn’t believe me.

And it’s not just my dad, of course.  Other people do it too.  “Come on!  We’re just going out for one drink.”  “I know the wind chill is eight hundred degrees below zero, but it will be nice and warm in the theater.”  “You don’t even have to dress up.  Just throw on some clothes and we’ll go.”

I just want my dad, or anyone really, to accept that when I say “No,’ it’s a well thought out answer, one that I often don’t want to give.  I like to do stuff.  Go to the farm or the movies or an outdoor art festival.  But my saying “No” is an indication that I, more than anyone else, know my limits.  But I continue to have hope for those days when I can say, “yes” and worry that my declining invitations will end up in a decline of invitations.

So that brings up a couple more questions.

Do I want people who ask me to do things to keep prodding and cajoling until I say, “Yes”?

No.

Do I want people to stop asking me to do fun things like concerts or shopping or dinner:

No.

You see?  It’s kind of complicated.

 

All Wrung Out

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(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful medical condition known to man.)

Note:  No sponges were harmed in the taking of that photograph.  And no, that’s not me.

You and I?  We’re sponges.  Every living creature is in their own way.  (And of course sea sponges really are sponges.)  From the moment we’re born we absorb everything around us.  We use our five senses.  We use the memory bank that takes up a portion of our brains.  We use the curiosity that takes up another portion.  And the logic.  Then, when necessary, we concatenate all of those receptors into a cohesive thought.  Or a new idea. Or an emotion.

And each of us is creative.  Oh, I know some of you might say, “Nuh huh.  Not me.”  But you are.  There are things we do every day because of TN that are creative.  The way we shield our faces, or put on make-up, or shower (or talk, or eat, or…)  The way we share about our condition on social media.  And things not related to TN like putting zucchini in brownies so your kids eat veggies.  Or fashioning a cup holder for your car out of a wire coat hanger.  Okay, I totally made those things up, but you get the gist.  But what we need to come up with those ideas or strategies is inspiration, whether it comes to us like a bright light bulb or in the case of TN, like a giant frying pan to the face.

I write but I’m not a writer.  Not really.  If the grammar police were to be perusing my blog I’d get a life sentence (unintentional pun there, but a good one).  I write as if I was having a conversation in a bar.  I write the way I speak.  And I break a lot of writer-type rules.  But lately I’ve found myself all wrung out.  Living with this condition has really limited the opportunity for inspiration.  I’m not just talking about my blog, but other writing I do as well.  And come on, how much can I really write about TN?  I think I milked that cow dry a long time ago.

It’s hard though.  I’m not talking about milking a cow, that’s just a metaphor.  I mean the lack of new inspiration.  I spend long hours where I could be writing doing other things.  I reorganize a lot, which I suppose is sort of creative.  I stare of into space – so, so not creative.  I’ll get the glimmer of an idea but it will trail off.  Or I may think of a character but not have the wherewithal to figure out the story.  The meds contribute to that fogginess, I’m sure, but so does the stagnation; the feeling that I’m standing at the side of the road watching the cars zip by.  I’m on the road, yet I’m not a part of the traffic.  And  I ain’t going nowhere.

I’m hoping that come spring I’ll get some of my creative mojo back.  That like the tulips that burst forth from the ground, I will find the story that goes with that character, or be able to follow that idea to see where it takes me.  And I truly hope that all of you who are kind of in the winter doldrums find that same energy this spring, regardless of how you use it.  But for now, I guess I’ll have to settle for using my lack of creativity for the creativity I need to write a blog post about creativity.

 

No Retreat Baby, No Surrender

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(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful medical condition known to man.)

“Like soldiers in the winter’s night with a vow to remember.  No retreat baby.  No surrender.” – Bruce Springsteen

I took my brother to see Bruce Springsteen & The E Street Band’s “The River” concert last Tuesday.  I wanted to write about it once I got home while it was fresh in my mind, but the show took a lot out of me. By the end of the first song, I was at pain scale 9, which is where I’ve pretty much stayed from then until tonight.  I wouldn’t do a thing differently though, even if I’m just now alert and focused enough to write about it.  I’m trying hard not to surrender to this condition even if it lands me, immobile, on the sofa for a few days.  This entry is part concert review/part I-live-with-TN post, so I hope it all makes sense.

Springsteen isn’t someone most people would think I have cataloged in the jukebox in my brain.  I’m not the fist-pumping, arena rock kind of person most of the time.  But I’ve had a special place in my musical heart for the Boss ever since seeing him live in 1980(-ish). I’ve attended dozens of his shows since then and took my brother this time because seeing Springsteen play live is something I think everyone should do at least once.  And he never disappoints (Bruce or my brother).  And there is a unified spirit among his audience, regardless of age or background that adds to the electricity.  Mid-way through the show, I accepted the fact that my brother isn’t quite as musical as I am.  He hardly moved.  Not even a toe tap. Meanwhile, the lady on the other side of me had an interpretive dance routine for every song, which sort of served to balance things out.

What drew me to Bruce’s music when I was a teenager are the same themes that many “punk” bands sung of – and those were more in my musical wheelhouse.  The sense of dissatisfaction.  The want, no make that the need, to be a person whom we are struggling to define.

I want to change my clothes, my hair, my face…”

Who didn’t feel that way at some point?  Who doesn’t occasionally feel that way now?” Okay, I think I’ve always had pretty good style, but I’ve certainly always wished I had better hair.  And the “face” part has taken on a whole new meaning in these past years. But don’t get me wrong.  I’d never want to trade my face with anyone.  No one deserves to be in this much pain.

Springsteen’s music also speaks of the search for a new place.  Somewhere, although yet unknown, where we can live a better life; someplace that is different from whence we came.  A place where we belong be it in the physical sense or something more.

Together we can break this trap.  We’ll run ’til we drop, baby we’ll never go back.”

I’ve always felt that way, and these days, that feeling has changed meaning for me.  In high school it was about the desire to find someplace less conservative than where I was raised.  To break out of my town.  Over the years, I’ve still had the desire to find a place – the place – where I was always meant to be.  My mystery home where I am totally comfortable with the world around me.  Where I am totally comfortable with me.  That’s a bit of a tall order these days due to the TN.  Now I just want to get to a place where I can be at pain scale 5 everyday.  That’s doable.  That’s not a pipe dream.  It’s just that getting there has turned out to be a very, very long road.

You can hide between your covers and study your pain…”

Part of this trek to a better (and less pain-riddled) life for myself has been to accept my pain, as I spoke of in a previous post.  My brother and I were talking in the car and I told him that being in pain is now as much a part of me as my hazel eyes and left handedness. I no longer wonder if it will happen, I just assume it will happen.  That’s my coping mechanism and it’s helped in a weird way.  I knew the concert was going to pain me – I always sing every song at the top of my lungs – and the fact that it was only about 10 degrees out didn’t help.  Did I have thoughts of “stop what you’re doing you dope,” and “man, you’re really going to feel worse in about an hour,”?  Yeah I did.  But this was a time when the pain wasn’t going to stop me, for, even in pain, singing along with a huge crowd to a great band was something I needed to make me feel alive once again.  I did, however, seriously consider punching the interpretive dancer in the kidney, but I realized getting arrested would mean that I wouldn’t have my nighttime meds.

As for the show itself, well, I can’t be unbiased.  This is the second concert where I’ve seen Springsteen do a whole album start to finish, and The River was an ambitious undertaking.  It is a two-album set that goes from subtle songs to barn burners and back again.  A mixture of joy and sadness, anger and resolve.  And, Bruce being Bruce, there were plenty of extra songs thrown in to ensure that the crowd had three-plus hours of fun.  My favorite song was, “Drive All Night,” where Bruce’s proclaims his love “heart and soul” in a way that is both plaintive and insistent. I wish someone would sing like that about me.  The end of his five song encore was divined to get everyone moving and singing and that it did.  As “Dancing In The Dark” segued into “Rosalita” before finishing off with an extended version of “Shout”, the crowd grew more alive with each note.  And even though I probably went through two tubes of Orajel and way too many meds, I was there, as I have been for thirty-five years, dancing and singing too.  And it was worth it.

“It ain’t no sin to be glad you’re alive.”

 

 

 

Not Working Is Not Not Working

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(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

People who hear about my current living situation will often say something like:

“You don’t work?  I bet you feel lucky.”

“Wow! You must have some fun days!”

“Gosh! You must have buckets of money!”

Well, I am coming to you from the sunny beaches of San Tropez where I spend my days casually strolling the beautiful landscape and my evenings dining at quaint bistros.

No, no I don’t.

And that answer can be the reply to each one of those statements up there. It’s true.  I don’t work, but contrary to what some people may think, not working is not, not working.  (I spent a while figuring out if that was grammatically correct.)  Living with TN is a job unto itself; one which has a taskmaster for a boss and little promise of any bonus.

Fact is, having TN is the hardest job I’ve ever had.  It’s more of a vocation really, except it is a “calling” that I had to answer.  It turned out to be a prank call.  One of those where you don’t recognize the number on your phone but you pick up anyway only to get rooked into some kind of time-share scheme where you never recoup your investment.

I miss working.  I worked for thirty-eight years and old habits die hard.  I miss not making a contribution to something larger than myself.  I miss not having to get dressed up sometimes.  I miss solving problems.  And mostly, I miss the people.

My daily goal is now complex in its simplicity.  Be well – or well enough.  That sounds pretty easy but it is deceptively difficult.  Each day brings with it a new schedule. Sometimes the pain is there in the morning, sometimes I have a respite until evening.  It is unpredictable and I am not a spontaneous person.  There are unexpected momentum busts like cloudy days or rainy days or days that seem perfectly fine but send me running for the Orajel. There are the budget meetings that go on between my brain and my love of food that often end up in a stalemate.  And my co-workers – me, myself and I – really kind of bore me, and there’s one, the really responsible one, that keeps pushing me to do more but then tells me I still haven’t done enough.

No matter where our careers may have taken us, I think many people, especially those of a certain age, sometimes look back upon our early working days wistfully.  Our jobs weren’t ones we took home with us.  We worked at places like McDonald’s or the Gap or, like me, piercing ears at the mall (one of many jobs of my youth).  Now I look back at those days with a different kind of regret; the realization that even that job would be too much for me to handle now.   Plus, even if it only lasts a second or two, inflicting pain on someone else, especially in the facial area, is just something that I would no longer want to do.

I do take my job home with me these days.  I take my job everywhere with me.  And I hate the thought of my mid-year review.  That boss of mine can be a real bitch.

 

A Young American Remembered

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(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

This post has absolutely nothing to do with my life with Trigeminal Neuralgia but everything to do with how I became me.  A little self-indulgent perhaps, but I hope it resonates with some of you in your own personal way.

David Bowie died.  I woke up to the news dumbfounded and speechless. I didn’t know he had cancer.  I didn’t know he was purposefully staying out of the limelight.  I thought it was just one of those moments where he would take a break and enter back into the public eye in a different way than we had seen him before.  He has a new album out, heavily influenced by jazz, and I was looking forward to seeing him bring his own brand of debonair ease to the PR circuit.  It had been too long since we’d seen him and alas now we never will.

I can’t think about Bowie without thinking about my old house on Cherry Lane.  About what I was like when I was young.  But mostly I think about my mom, who like Bowie, died much too soon over ten years ago.  She was 68 when she passed.  He was 69.

Much of who I am has been informed by music.  My father, true to his roots, has always been a fan of opera, Tony Bennett and Frank Sinatra. While my mom, well, my mom’s playlist was pretty much anything but opera, Tony Bennett and Frank Sinatra.  It’s no wonder they divorced when I was eleven years old.

The radio was always on when I was growing up.  It served as the musical score for activities taking place in our kitchen – and in my house almost everything took place in out kitchen.  The Rolling Stones, Led Zeppelin, CSNY were among favorites when I was very young.  Eventually, AM radio gave way to a turntable from which bands like Genesis, The Boomtown Rats, XTC and Prince could be heard.

And then there was Bowie, played on heavy rotation, especially when I was in high school.  It wasn’t uncommon to come home from work to hear “Ashes to Ashes” or “Changes” blasting so loud it could be heard from the driveway.  If I had a new friend in tow, they would invariably say, “Your mom must not be home.”  “That is my mom,” I would reply while opening the front door to the full wall of sound.  And his sound was something that couldn’t quite be categorized.  It was amorphous without explanation and his fans were more than happy to go along for the ride.

It wasn’t just his music that drew my mother, and I, to Bowie’s talent.  It was the confident and effortless way he transformed himself from the androgynous Ziggy Stardust to a stylish punk in black leather to the suave performer in stylish suits along with many other looks in between.  He, as well as many other artists of the late-70’s, gave people like me permission to be different.  It wasn’t for difference sake alone but rather because it was an extension of the person that is me.  I grew up in an era where the preppy look was the standard and my sensibilities never connected with that style.  I didn’t dress the way that I did, all in black with heavy eyeliner to make some statement on society.  I just liked it.  It was how I felt most comfortable (and still is to this day).  And I was fortunate to have a mother who took pride in my being different.  I’ve always thought she lived somewhat vicariously through me in that way. That she took delight in raising a kid who didn’t buckle to the mainstream because although she looked every part a Mom, buckling to the mainstream was just not in her DNA.

The death of David Bowie doesn’t lay to rest those memories of mine, they will always be with me just as the many other memories I have of my youth.  But in musical terms, his death is something of a coda to the soundtrack that was so prominent in those days.  I will always love his music, but that loved turned bittersweet when my mom died.  Now I have another reason to feel melancholy, yet I am grateful for the indelible impression he made on my life nonetheless.  And of course, my gratitude toward a mom who didn’t try to change me is limitless.

Although British, one of Bowie’s best known song is titled, “Young American”.  At the end of the song, Bowie sings in a fast stream of vocals then the song sort of stops and the backup singers come in with the line, “I read the news today oh boy.”  It’s a moment in the song that no matter where I am, I always sort of take a pause and wait for it, and for the end of the song that commences afterwards.  Sadly, I read the news today oh boy, there will be no more new songs.  R.I.P. David Bowie.  May God’s love be with you.

Seeing Stars

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(Today’s blog post is part of a continuing series of personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

“We are all of us in the gutter, but some of us are looking at the stars.” 

That quote up there, penned by Oscar Wilde, is one of my favorites.  Okay, I’ve got to be honest, the first time I heard it was not from Wilde’s work.  Rather, it was lifted by The Pretenders for the song, “Message Of Love.”  But it resonated with me just the same.

While I have always appreciated that line, over time I have come to take umbrage with it.  I don’t think only some of us are looking at the stars.  I think each of us do it every night, albeit in a way that is perhaps meted out in different weights based on the lives we live.

What do I mean?  Well, I have Trigeminal Neuralgia, an extremely painful medical condition that impacts my life daily.  Initially, it kind of sunk me mentally.  But after a while, I began shifting my expectations for what constitutes a successful day.  In the past, the stars on which I hooked my wagon were mainly professional – putting together a successful annual business plan, not making a fool of myself in an important presentation, being recognized and promoted to a higher position.  After the TN hit with a vengeance, the stars I followed became more modest.  Meeting a friend for dinner.  Writing a blog post.  Taking a shower.

Okay, that sounds totally depressing.  But here’s the thing…when I really thought about it, I realized that almost everyone is dealing with something.  True, I have a debilitating condition, but others have illnesses that are terminal.  Some are dealing with the loss of a loved one.  People struggle each day with mental illness that is as paralyzing is TN.  Good people, hard working people, are striving not for luxury cars or fancy clothes but rather for keeping the roof over there heads and food on the table.  Others are painfully lonely.

And in our own ways, we are all looking at the stars finding just one that we wish upon to guide us to a brighter future.  Yes, there are those that lose hope, and there are moments I can understand why.  Yet by and large, I think we all look to the heavens with an eye toward a future we think is possible no matter how small the improvement may be.  And in our quiet moments, our most desperate moments, we also wish upon the stars for much loftier aspirations.  A cure for TN.  A cure for cancer.  Peace in this world.

So on this day, when in the past the dark of night brought forth a star which some believe led the Magi to begin their trek to the town of Bethlehem, my hope for us all is simple.  One star, no matter how bright or dim, for each of us to follow, to guide us to a life that is just a little better than it was yesterday.

And remember, in the words of John Lennon, “We all shine on, like the moon and the stars and the sun.”