The Other Shoe

(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.)

Question:  What’s even better than finding out you have the most painful medical condition known to man?

Answer:  Knowing it will only get worse.

Well, aren’t I just little Sally Sunshine today?  Actually, I’m in a pretty good mood, but the future is definitely something I think about.  Or rather I think about not thinking about.  I prefer to be in the moment – in the “now” if you will.  That isn’t some kind of philosophical crap about living each minute to the fullest.  It’s self-preservation.  See, if I really start thinking about where I’ll be in a year or five years, it’s pretty damn depressing.

Let’s look at my facts:  I’m a single, fifty years old female and I rarely leave my house, so, you know, men are really beating a path to my door.  (And if you buy that, you are clearly NOT a single, fifty year old female who rarely leaves her house.)  I’m not saying the path to personal fulfillment lies only with finding the right man, but it would be nice to be meandering through the days with someone.  I can’t have a job at present due to the TN and trying to fill my days with something – anything – I can do to help from turning my brain and body into mush is a challenge.  Please know that I am aware that a lot of people wish they were in my position of “early retirement” if only for a little while.  But it’s harder than it seems.  First the financial aspect is frightening, but moreover the psychological impact is even worse.  I’m used to working, talking with people, solving problems, heck, moving.  I don’t need a FitBit thing to tell me how much I’ve walked each day.  I can just count how many steps it takes for me to walk from the living room to the kitchen and multiply that by eight or so.

Okay, I kind of got off topic.  I started out talking about the future.  But that’s what happens.  When the spectrum of the future is laid out before me, I mentally change channels.  My short-term future consists of deciding whether or not to put more ice in my glass of water.  I don’t think of the long-term unless long-term can be defined by how many days the watermelon I bought will stay good in the fridge.

Is it unhealthy for me to not think about the future?  I’m gonna say no.  The reason being that I would probably imagine the worst possible outcome and that just may not be what happens.  Maybe there will be new advances in the treatment of TN. Maybe I’ll go into a remission and be able to work again.  Maybe when I’m out buying watermelon I’ll bump into a single man who has the looks of Kevin Bacon and is as much of a goofball as I am.

So I’m not going to think about it.  I’m just going to go put more ice in my glass of water.

(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.)

It’s 10:15 pm and I’ve been stood up.  I’ve waited for over an hour now.  I wish I could say that I’m talking about a date, but I’m not.  I’m talking about my meds.  It’s been over an hour since I took my nighttime combo and so far, nothing.  I blame myself.  I got wrapped up in reading and took them almost an hour later than usual.  And if there’s one thing people with TN know is that we must take our meds with an accuracy of time similar to that used for the Olympic fifty-yard dash.  One second off and baby, you’re a loser.

So now I wait.  Wait and hope that my delay won’t result in a night spent moving from one room to the next, milling around in the dark, sleepless because of the pain.  I wish it was a date that I am waiting for in vain.  At least then I would have a different focus for my anger.  But it’s me I’m mad at.  Me and this stupid condition.  Me and my reliance on medications no matter how necessary.

And the clock keeps ticking away…

(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 week I have embarked on a difficult and emotional project – I am cleaning out my closet.  Not just cleaning it mind you, but brutally decimating it one sweater at a time.  I have found myself looking away as my hands stuff a pair of pants or a cardigan into a large black garbage bag.  Truth is, I’m not an overly sentimental person when it comes to material items.  I do keep books of course, and my vinyl (I knew it would come back one day), but I don’t have a lot of trinkets that serve as token reminders of past experiences.

Yet, I do keep clothes.  For years.  Decades even.  My wardrobe serves as a scrapbook of my life.  Those black Converse high tops with the bleach splatters?  I got them in high school (30 years ago).  I also wore them in Florida when I was there during Hurricane Andrew.  The white splotches are from tossing chlorine into a pool in gale force winds.  That fabulous vintage beaded top?  I wore it to a concert where I met Johnny Rotten* (appropriate name).  Those Donna Karan pants?  They were the first “expensive” pair of pants I ever bought.  And the tweed blazer?  My aunt passed that down to me when it no longer fit her.

And that’s where I’m at.  Due to inactivity and medicinal side effects, many – actually most – of my clothes no longer fit me.  The weight gain came on so strong that I even outgrew items before I had a chance to wear them.  I ended up with four sizes of pants in my closet – enough to open my own boutique right there in the bedroom.  Heck, just the amount of black pants I packed up was kind of embarrassing.

So far, I have five giant trash bags and one sizable box filled with clothing and I have yet to finish.  It’s like a clown car in there.  I keep pulling items out and yet it never seems to end.  I have prudently knotted the handles of the bags in case I get the urge to start pilfering items back into my dresser.  It is on one hand a good feeling to streamline my possessions (and donate them) yet also sad to see that once again TN has impacted every facet of my life.

So if you’re at a Salvation Army store in Northern Illinois in the near future and see a plethora of like-new black pants or an influx of sweaters sized from XS to L, they are probably mine.  Wear them in good health.  But if you’re trying to find those beautifully decrepit high tops, it ain’t gonna happen.  Some things are too precious to ever give away.

*Johnny Rotten was the lead singer of The Sex Pistols, a completely untalented yet remarkably influential punk band in the late 70’s.

(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.)

Like most of my stories, this post is going to take a meandering path, so please hang in there with me. When I was a child, my dad and my uncle used to take my cousins and my sisters and I to Starved Rock State Park in Illinois.  We would camp there in the Fall.  It is a beautiful place, with ravines that rushing water carved out thousands of years ago surrounded by high jagged rock walls.  It’s not nearly as big as the Grand Canyon but it is lush with trees and moss that is beautiful when Autumn’s paint brush turned the landscape into a mixture or greens, golds and reds.  At the time, there were no “off-limits” zones and my dad and uncle would have us scaling rock walls that no children had a right to be climbing.  Or we would have to walk along ledges, with our back to the rock, sidling on overhangs that were barely longer than our feet (and hundreds of feet from the ground).  If that wasn’t dangerous enough, one of them would say something like, “Oh and watch out for snakes as you walk.”  It was extremely dangerous and ill-advised and we loved it.

Flash forward many years to when my brother was born.  By then the park had realized it was probably not a good idea to have anyone and everyone scurrying willy-nilly up the side of cliffs, so they roped most of them off.  But it was still a good time.

When traversing the area, we would often come across creek beds that were dry by the time we arrived in Fall.  Yet in the Spring, they would be brooks and rivlets that could be unexpectedly dangerous.  Little signs were posted reading “Beware Of The Under Tow”, which became a bit of a joke to us as we took to calling it “The Under Toad” as if it was a little character that liked to pull pranks.

Okay, here’s the part that brings that whole story back home.  Like many people with TN – or other conditions – I’m heavily medicated.  And one side effect is what we call “Brain Fog”.  Somehow in my goofed up brain, I now refer to it as “Brain Frog”.  I try not to, but it still happens.  So, I’ve decided to go with it and give the Brain Frog a little personality of its own.  It is the Brain Frog that makes me forget things or do something stupid or zone out.  It sort of takes the pressure off of me to think of it that way.

So today I start a recurring series called “Notes From The Brain Frog”.  Here’s one for today:

Dearest Sally, (The Brain Frog is quite formal.)

I’m sorry I made you punch 14.00 into the microwave instead of 1:40.  And it was I who caused you not to notice my mistake until the damage was done.  I realize cleaning up the oatmeal explosion in the microwave was not on your schedule for today.  I will do my best to make sure it never happen again.

With sincerest apologies,

The Brain Frog

Have you had a Brain Frog moment yet today?  In my case, I’m sure this will not be the last, but at least I’ll have someone else to blame.

“but did we ever have you?” – John Lennon

Mother’s Day is here so of course it’s a time when I think about my late mother. Actually, I still think about her a lot even though she passed away over ten years ago.

When I was young, mine was the cool Mom and ours was the hangout house. Between my two sisters and I, there were always people coming and going, stopping in the kitchen for some conversation and a snack.  At any given time, our kitchen table held everything from books and magazines to Sara Lee brownies and giant orange circus peanuts.  There was almost no inch of table to be seen.  Mom would hold court in her chair below the wallphone.  And there was music. Everywhere, music.  She blasted the Stones and Led Zeppelin on the car radio or played XTC or the Boomtown Rats or Prince on the stereo at home.  When other moms were cautiously teaching their kids how to drive, mine was taking me to the empty school parking lot at night to show me how to squeal my tires and do donuts in the snow.

It wasn’t that she was one of those parents desperately trying to hang on to their youth by being everyone’s buddy.  She was who she was.  She didn’t dress in trendy clothes or use the teenage slang of the day.  There was always a yellow and a green vegetable on our dinner table.  My sisters and I were expected to take school seriously, have good manners and treat adults appropriately.  And although the rules often imposed on high school kids by their parents were a little more lax in our case, when Mom said, “No,” the answer was, “No” especially because she didn’t say it often.  There was mutual respect in our house.  I never worried that she was going through my room when I wasn’t home and I think she never worried that I would do something really stupid.  However, she would occasionally lob out a question totally from left field just to be sure.

“Sally?  You’re not slutty are you?” she’d say as I was heading out the door for school or work or to hang with my friends at the arcade.

“No Ma.  Still a virgin.”  I’d say over my shoulder

“Okay.”

Every now and then, when I came in at night, she’d look at me and say, “If looks like you’ve been smoking Mother Nature tonight.”

That wasn’t phrased as a question so I felt no need to reply, yet I wondered how does she know?  Turns out, she never did.  I found out many years later she’d just throw that comment out every now and again to freak me out.  And honestly, the odds were in her favor that she’d be right.

But there was something about my mom.  Something elusive.  It wasn’t a scary thing, but sort of unsettling.  Even though we had a very open relationship, I always felt as if there was a part of her whom I didn’t really know.  It was like she was giving us all maybe seventy percent of herself, the other thirty being a part that she kept hidden in a secret world inside her head.  She had this ingrained, almost pathological need to buck the system, even if that meant something irrational like refusing to wear her seatbelt simply because it was a law.  We were raised to believe that it was okay to be different, yet my mom almost questioned authority for authority’s sake.  (And I think she viewed my dad as “the authority” which was partly responsible for their divorce.)  My parents were truly living out the American dream of creating a life much better than their parents’ yet Mom almost resented taking what was the golden path because she found it too “plastic” and phony.

In many cases, age is the great equalizer and I think for many children, they develop a relationship that is on equal footing with their folks as they get older. It’s interesting that in our case, the generation gap when we were young was much more narrow than in the case of my friends, but as we grew older, the distance only increased.   But it wasn’t a chasm widened by age, but rather a shift in the balance of how much of Mom we were allowed to see.  As she became older, she lived more and more inside her own mind and it was a place we rarely even glimpsed.  What was once eccentric became erratic.   What were once free-wheeling conversations became ones where she closed herself off, sometimes even refusing to talk at all.  The rebellious streak became disdain.  Her intellect, once such an attractive part of her personality, turned into a way for her to manipulate the situation to enable herself to appear “normal” for the right people, at least for a little while.

If you’ve been reading between the lines here, you probably are thinking that it sounds like my mother was mentally ill.  I vacillate on that point, not because her behavior was more often than not anything but typical but because she would often give a figurative wink that showed she was in total control of her crazy.  But as the years went by, she was less and less the mom we once knew, so the mourning process for who she was started long before her actual passing.

Would I have traded for another Mom?  Absolutely not.  For all her quirks – or maybe because of her quirks – she is a huge influence on some of the more positive parts of who I am today.  (But in all honesty, she also contributed to the more negative parts as well.)  I loved her.  No, I actually think I adored her.  I just wish I had known all of her.

(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

This conversation has actually happened.  More than once.  I will use the abbreviation F which could stand for “family” or “friend”.

F:  “I’ve heard you’ve been sick.  How are you feeling?”

Me:  “Well, I’m not exactly sick.  I have a condition called Trigeminal Neuralgia”

F: “Tralalala…what?”

Me:  “Trigeminal Neuralgia.  It’s a progressive chronic pain condition affecting the trigeminal nerve system that sort of snakes its way around my head.”

F:  [blank stare]

Me:  “My face hurts.”

F:  “Ooooh!  Do you want a Tylenol?”

I don’t recount that common conversation with hostility.  No one has heard of this condition, so I really don’t expect not to have to explain myself.  But therein lies one of the biggest challenges of having TN:  no one has any idea what I’m talking about (unless they have it, also).

Having any chronic illness is difficult.  Having one that nobody has heard of adds a whole different level of complexity.  First there is the whole diagnostic process.  Some people just don’t have access to doctors who have even heard of this condition.  And for some of us, it is more a diagnosis of exclusion than an easily-verified disease.  Next, the “wheel of pharmaceuticals” we all spin.  There are no dedicated medications for TN and even those that work are often not eligible for insurance because they are prescribed “off label”.  Each of us go through an often lengthy process to find drugs that provide some relief.  And good luck getting disability.  Little data has been gathered on people with TN so some sufferers are received with skepticism by their doctors. There are several surgical procedures, but no definitive cure.  Heck, we don’t even have our own dedicated ribbon color – TN shares theirs with other conditions (it’s teal btw).

I’m pragmatic.  I don’t think funds should be diverted from say, breast cancer or brain cancer research, to studying TN.  In reality, our small numbers make that impractical.  Add that to the fact that TN is not a fatal condition.  Yet at the same time, it is frustrating that the “most painful diagnosis known to man” doesn’t get a little more attention by the medical community.  You’d think some med student or doctor would find some personal challenge in identifying a cure.

We need a spokesperson.  Someone famous.  Someone famous who is universally liked because they are a good person.  No…wait…I wouldn’t wish TN on aa person like that.  I wouldn’t wish TN on anyone.

(Note:  I realize there may be some redundancy between this and past posts.  It may be because I’m running out of things to say, or because my meds have fried my short-term memory.  Or a little of both.