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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.)

That picture up there is of a design etched into the snow of a farm field.  It’s quite beautiful and for me, somewhat symbolic of the change in state of mind that I have been trying to embark on of late.

I live in Northern Illinois.  It gets cold here, really cold.  The kind of cold that makes it painful to breathe and for someone with TN, painful to do anything.  And we also get snow.  In fact, here is a view from my balcony this past Monday:

Every year I would find myself growing more and more anxious at the end of Autumn.  But after 51 years on this planet, this year I am taking a different approach.  I see this snow outside my window as a landscape equally as beautiful as that in the summer.  Maybe more beautiful.  The lack of leaves and the gentle frosting of snow delineates the lines of the trees.  I see the footprints of the deer and coyotes which in summer is a presence of wildlife hidden to me.  While the cold can be brutal, I am facing it as a challenge instead of a burden.  Will I get annoyed at times? Inconvenienced?  A little scared?  Yes.  But I hope that I can see more of the beauty than the bad because after our winters, summer is like a trophy.  Like a way of saying, “Congratulations, you made it.  You succeeded at going into something difficult and making it out the other side.”

For the past few months, I have been trying to view my life with TN in much the same manner.  Being diagnosed with a chronic illness, especially a pain condition, renders a path similar to that when someone we love passes away.  First we’re in denial.  “Oh, that can’t be what I have. Surely there’s been some mistake.”  (Oh, and I won’t call you Shirley for all the “Airplane” fans out there.)  Or we tell ourselves it’s really not going to be that bad.  That it’s something that can easily be fixed, when for most of us, it’s not.

Anger comes next.  Although I’ve never met a TNer that questions “why me?”, a heck of a lot of us ask “why does this happen?”  And most of us don’t get any answers to that question.  It’s frustrating, as are the times when we make plans to do something fun and end up canceling at the last minute.  Or when it seems like we don’t have TN but TN has us.  We see our world grow smaller due to leaving work, friends who drift away and our inability to do certain things that we once did.  We get mad at those friends and mad at missing out on things, but mostly we get mad at TN, which is something that we can only control so much.

In the quiet of night, while we lay in bed (which often does not just happen in the quiet of night). we try and think of ways to bargain out of our circumstances.  “Okay, I won’t leave the house for two days, then I’ll be sure to be fine for the party on Saturday.” “I’ll never eat ice cream again if the [insert breathrough pain med here] works.”  Some of us move to places more conducive to having more low pain days.  Others try medications that scare the heck out of them in hopes it will make a difference.  And we pray – often not for ourselves but for the other members of our TN family who we know have it worse than ourselves.

Depression is the next stage, although I contend that it isn’t quite a stage but an umbrella under which all the other stages huddle.  We mourn the person we once were.  We mourn how relationships we have are changed. We wonder when or if our lives will get back to even a fraction of how it once was.  It is, what I consider to be, a natural and negative obsession that overtakes us and pulls us down.  And sometimes our lack of motivation becomes less about our pain and more about our sadness.

And finally we reach the Stage Of Grief called “acceptance” and after a long time, I think that’s were I am today.  I’ve spent a lot of time living in my own head this past year.  That’s kind of a hard statement to clarify, but it’s like I sort of mentally disengaged from myself.  I didn’t shut my family out, or friends, but I wasn’t fully there.  (Okay maybe I did shut people out at times.)  Then I reached a realization.  This life I have, this is it.  The TN ain’t going away and laying on the sofa all day won’t change that.  So I have accepted the pain and the meds and the brain fog and all the other issues that go with having Trigeminal Neuralgia.  Does it make the pain go away?  Hell no.  It’s still there but now it is a part of me just like my hazel eyes and brown hair.  But acknowledging its permanence has had a very positive effect.  I don’t wait around for things to get better, at least not as much.  I try and get out every single day even though sometimes I can’t muster the adrenaline to take a shower.  Instead of looking inward, I am trying to look outward.  And I’m pushing myself.

My father often gets a little despondent about my being in pain and I usually lie and try to ease his worry by saying, “It’s only pain.  I can handle it.”  Today I think that statement is no longer a lie.  That might not be the case forever, but for now, I have accepted my pain and I can handle it.  I am standing on the edge of that field of snow, and instead of looking away, I am trying to figure out what design my feet will make as I move forward.

Note:  TN is a strange companion.  That last paragraph up there?  Next week or next month or next year, I may re-read that and think “that’s a load of crap, Sally.”  But for now, I’ll take it.

*This is not my bed.

(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.)

For the last week or so, my TN has crept into bed and layed beside me like a rain-soaked dog.  I say rain-soaked because generally, I’ll share my bed with any dog (and I mean the literal kind).  I once had a rescue dog who had a little gas problem brought on by his fearfulness.  He burped just like a human which amused me more than irritated me.  Digestive problems or no, he was welcome on the bed any time. He deserved it.  But a skunked dog?  Or a wet dog?  Sorry buddy, you’ve got to flop somewhere else.

Although I am in some level of pain all the time, I’ve always considered myself lucky that my TN starts to feel better around eleven pm.  It is atypical for even Atypical TN.  Whether it’s the cumulative effect of the boatload of meds I take each day or perhaps because my nerves get too tired to fire at night, I find a respite in the witching hour.  So I try to stay up to take advantage of the feel good moment, which for me means it’s at about a level five on the pain scale.  Fortunately I have some insomniac friends who keep me company either by text or online.  Last night I had a rather heady text conversation that ranged from conspiracy theories to Da Vinci’s scientific genius to Leopold and Loeb.  At around one-thirty I felt like I might doze off mid-sentence, so I bade my goodnight for the evening.  I now realize that was a gesture of wishful thinking.  It was not a good night.

Interestingly enough, I did nod off and had a memorable dream at about three this morning.  I don’t usually remember my dreams, so the ones that etch in my brain are usually pretty entertaining.  I was in a vehicle with Elvis.  The leather-clad, 1968 Comeback Special Elvis.  Only it was in present day and he wasn’t quite so Elvis-y.  He was updated for the times.  He had jeans on, but still wore his well-tailored leather jacket (because a good leather jacket never goes out of style).  He wss driving.  We were in a snowstorm and Elvis decided he needed a shirt, so we stopped at Sears.  The store was pretty empty due to the weather, but a few women came up to him all gaga requesting his autograph.  He graciously obliged.  I have no idea what our relationship was in the scenario but I was keenly aware that while he was the younger, cooler version of himself, I was pretty much who I am today.  I didn’t really question it much – I just went with it.  I’m not a huge Elvis fan, but I felt special to be hanging out with him.  And it was a dream after all.  

Anyway, so we get to the shirt rack at Sears and Elvis picked one out and then my previous job in marketing sort of kicked in and for some reason I told E that he had to buy a second, different shirt so that we could do an A/B test to decide which one people liked better.  It got all statistical for a moment, then we paid for the two shirts and exited the store.  I wanted to get into “my” car which had mysteriously appeared at Sears.  Only it wasn’t really my car.  It was an orange 1969 Dodge Challenger, or perhaps a Charger, neither of which is my all-time dream car.  Elvis was driving the untethered cab of an 18-wheeler.  “Mine will be faster, “ I said, but Elvis wouldn’t have any of it, so into the truck we climbed.  I remember enjoying the feeling of looking down on the snowy pavement from such a height and feeling safer than I would in a car.  We drove for a while, the headlights capturing the criss-cross pattern of wind-swept flakes on an otherwise dark road.  Then I woke up.

I remember the dream but I also remember the pain.  It was right there with me in my slumber, impacting my actions as it does when I’m awake.  My movements were more conservative and deliberate.  I wasn’t as verbose or animated.  I bent my head down and put my hand up in a vain attempt to shield my cheek from the weather.  And when I woke up, the pain was there on top of me, pinning me in to one corner of the mattress.  I stayed awake for awhile, trying the few little tricks I have to sometimes ease the discomfort.  I gently brushed my teeth with warm water hoping the massage of my gums might trigger my nerves to rest.  I applied gentle pressure with a small pillow.  I squeezed about half a tube of Orajel onto my tongue and worked it around the left side of my mouth until I was drooling.  Nothing worked.  

It has become a pattern now.  I’ll doze of lightly, then awaken, each time hoping the pain was part of an un-recalled dream.  But the pain is there, on me, in me and around me like the smell of a rain-soaked dog.  And Elvis has left the building.

Note:  I wrote this at about 4:15 am.  I tend to be a little over dramatic at that time.

(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.)

Today is October 7th.  Do you have the date circled on your calendar?  Probably not.  Up until recently, I didn’t either.  But today is International Trigeminal Neuralgia Awareness Day.  Oh there won’t be any parades, or mentions on TV, but that’s the reason why awareness is so important.

I was diagnosed with TN about two years ago, although I’ve had the symptoms for seven years or more.  This condition has not only caused me to be in constant pain, it has also robbed me of much more important things than just personal comfort.  I left a position with a company I loved after eighteen years because I was no longer able to perform at what I considered to be of the right caliber. Much as I want to be working, my health is not dependable enough to enable me to get a job. With the loss of my work-a-day life, I also lost much of my social life and a daily connection to people.  The meds I use to help take the edge off the pain have caused weight gain and drowsiness, which is a really bad combo.

So yeah, I have this extremely painful condition, but you know what?  I still consider myself blessed.  Here’s the thing…I’ve lived through much harder events in my life than TN.  And I know many people have it much worse than I.  Living in a large metropolitan area, I was diagnosed fairly quickly by doctors who knew about and already had patients with Trigeminal Neuralgia.  Many people don’t have that experience.  During particularly bad pain flares, even their emergency room medical personnel have never heard of TN.  And my hunch – and I must admit I’m a pretty good huncher – is that there are many more people living with TN than are diagnosed.

I also have a family that “gets it”.  They might not be able to empathize with the pain and I’m certainly happy for that.  But they believe what I am saying about my condition and I’ve never caught anyone giving each other fish eye of doubt.  Yes, I have lost friends because of TN, but I’ve also had people step up in unexpected ways. I’ve also met some great people, albeit virtually, who also live with TN. And at fifty-two, I’ve had a lot of good years where I didn’t have pain.  I can’t imagine being a child or the parent of a child diagnosed with this condition and learning that the vast majority of their best years will be lived under a cloud of pain (and meds).

Trigeminal Neuralgia is a curse which has led me to recognize the simple blessings – the love of my family, the support of a handful of good friends and the appreciation that any day, no matter how humdrum, is a good day when my pain level is low.  We in TN land call ourselves warriors and it’s an apt title.  Every day we must wake to an unknown fate, fight the pain, live with our losses, but we are still here and those good days are glorious.  And if someone reads this who learns about TN from this and other blog posts, well that’s just gravy.  Happy International Trigeminal Neuralgia Day to all.

(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.)

That picture up there is of a list I made for my various shopping destinations.  I try to do everything on one day because I never know when I’ll have another one where I feel well enough to get out.  You know that you’re in a fog when you have to write “jeans” as the item to purchase at Old Navy because Old Navy pretty much doesn’t sell anything but jeans.  Although I suppose there is an Old Navy for things like battleships and pea coats but the need for those things seems to be pretty rare, especially when you live in an apartment and rarely go outside.

But that’s what it’s like having TN.  Sometimes even the obvious eludes us.  My kitchen counter is usually speckled with bright post-it note reminders of everything from “Make doctor’s appointment” to “run dishwasher”.  Sometimes I have a hard time remembering whether one of my scraps of paper lists something I’ve already done or something I’ve yet to do.

But anyway, I go to Old Navy excited because I saw a commercial that they have jeans on sale for $15.  I need jeans.  The weight gain cause by drugs and inactivity has once again led me to need new clothes and it’s foolish to spend a lot of money knowing that everything I own today is of a transient nature – fits today, not tomorrow.  It was a lovely day and I went into Old Navy in a pretty good mood.  I’m looking through the racks of jeans and I notice that there aren’t huge, “JEANS $15!!!” signs everywhere.  So I ask an employee and he says, “Oh, yeah, that ended last night.”

“$#%@!!!,” I think.  My dream of getting three pair of pants that actually fit for $45 now shot.

“But,” the employee continued, “if you apply for our credit card, you get 40% off.”

And I was happy once again.  I don’t need an Old Navy credit card, but the 40% off would pretty much get my jeans purchase down to my goal $15 of pair.  I merrily go into the fitting room and try some jeans on, my euphoria over getting a good deal masking my disappointment at the size of jeans I now need.  And I kept my eyes on the prize.  Jeans and jeans only.  Nothing else was in the budget.

I exit the fitting rooms with my three pairs of jeans and head to the cashier, ignoring all those little doo-dads and candy they have in the snaking path to the counter.  I was a little proud of myself, for my attraction to anything colorful or shiny sometimes results in a lot of unneeded stuff in my shopping bags.

I set my wares down on the counter and tell the cashier that I want to apply for a credit card to get my 40% off.  He takes my driver’s license and starts to enter my information into the system, and then it dawned on me…

I don’t have an effing job.  Oh, I’ve got a great FICO score, more than $45 in the bank and credit cards that I use responsibly, but I don’t have an effing job.  Heck I got an American Express card when I was nineteen, I’m so responsible with money.  But when I was nineteen I actually had an effing job.

To head a blow to my dignity off at the pass, I say to the guy, “This may not go through because I don’t work.  I’m semi-retired.”  Semi-retired.  Riiiiight.  I really wanted to say, “This might not go through because I have the most painful medical condition known to man, so I can’t work even though I want to.  And I have never had credit problems in my life, so please let me have the darn credit card and the 40% off because I only have two pairs of pants that fit me and I really need some new jeans.”

“Oh, people are rarely declined,” the cashier said, handing back my license.

Then we both stood there waiting for what seemed like hours but was really 30 seconds.

“Ummm…yeah,” Mr. Cashier says, “you’re declined.”

I needed to save face so I still bought one pair of jeans.  Then, feeling dejected, I headed toward home.  I needed a little pick-me-up, so I stopped at Portillo’s and got a chocolate malted.  I haven’t had one in months and it hit the spot, making my disappointment of a day a little bit better.  The only problem?  Once I had the malted, my new jeans no longer fit.

(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.)

Note:  This post may not be about Trigeminal Neuralgia.  But it might.  We’ll see.

Something happened last week.  Something that affected me in an unexpected way.  I found out that a club I frequented virtually weekly in my twenties (and occasionally thereafter) is closing its doors after being in operation for thirty-six years.  The name of the place is Neo and it’s down a dark alley just south of the intersection of Clark and Fullerton on Chicago’s north side.  It isn’t the type of place that just anyone would go to and for most of its patrons that was part of the draw.  It was a place friendly to what many in society would consider misfits – those misunderstood youth with black clothes, black lipstick and black leather jackets who found the hours from midnight to sunrise to be the most beautiful time of day.  And I was one of those people.

Contrary to what some might think, I and people like me, clumped together into a group labeled “punk”, were not all doom and gloom.  Heck, I considered myself to be pretty happy-go-lucky.  I can’t speak for everyone, but for me, the clothes I wore, the places I hung out and the music I listened to was less about eschewing the mainstream and more about finding the real me.  I was comfortable in my skin back then, even if my “skin” often brought rancor and unsolicited commentary from strangers on the street.  My style also didn’t win me favors at the Catholic university I attended, but it didn’t matter (especially because I still got good grades).  Wearing black lace, heavy eyeliner, Doc Martin’s and more than the required amount of patchouli was how I felt most comfortable.  Hunting through thrift stores for a vintage gem on a welfare budget was like winning the lottery.  And honestly, much of that same aesthetic is what still draws me today. It may be toned down in an age appropriate way, but even at fifty-one, black clothes easily take up over half of my wardrobe.  I still wear my leather jacket and even fishnets on occasion.  Oh, and the black eyeliner of course, which will have to be pried out of my cold dead hand.  And usually, there is a skull somewhere on me, even if it is hidden to the public.

But here’s the thing…living in what might be called a fringe social group, even one that was misunderstood, was the most freeing time of my life.  And Neo was a part of that.  It and other places with names like Exit, Medusa’s and Smart Bar were private sanctuaries where the tie the bound us was a love for personal expression and for the music.  Oh God yes, the music.  And we all were grateful to be in on the secret.

I’ve gone back to most of my old haunts over the years, but Neo is the only one that still had the same feeling.  The sense that regardless of how we looked, even how old we were, everyone was equal on the dance floor.  It always felt like home. And when there, I always had that same sensation of freedom, regardless of the years, the corporate life I fell into, and the pain I live with as a result of Trigeminal Neuralgia.  I felt more like me again.  And its closing has hit me with a mix of gratitude and sadness.  I look back on those days wistfully, glad that I was a part of an underground scene before it became more mainstream and commoditized.  Happy that I was confident enough to be who I wanted to be even if it wasn’t always met with a positive response.  And yet there is that melancholy. A time in our lives where we mentally compare who we were with who we are today. It’s of those moments that makes you feel like something in the universe has changed just a little, and not in a good way.

I’ve been hoping to get to Neo before it closes, but so far, my TN has kept me from going.  But this Thursday, I have the final chance to have just one, no make that many, more dances on that familiar floor.  To sink into the comfortable darkness and be me again, if only for a little while.

(Note – I should clarify that the folks at Neo have indicated that they are not closing for good, but have lost their lease at the present, and long-time location. It may open again, but unless they somehow transfer the history and patina of those black walls, it will never be quite the same.)

(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.)

I draw a lot of analogies about living with TN.  Actually, I draw a lot of analogies about everything in my life.  Maybe it’s a coping mechanism.  Maybe it’s the way I make sense of situations.  Maybe it’s just because I have a lot of free time on my hands.

Whatever the reason, I’ve been thinking about the passage of time lately.  I don’t mean in the life-span kind of way, that would be way too depressing.  Rather, it is how I look at relatively small increments of time: a day, a week or a month.

Which leads me to Frogger.

If you’re not familiar with Frogger,  it’s a video game where you’re the frog and you try to hop to safety while crossing a highway and a stream.  All you really care about when playing the game is the next move.  Cut your timing too short on the highway and you’re roadkill.  Miss a log on the babbling brook and you’re rendered unconscious to sink beneath the briny deep.

I live my life like Frogger.  I don’t really look at the long-range picture because I am too focused on just making it to the next spot in the road.  That could be my doctor’s appointment on Wednesday or the family function on Saturday or even my next trip to the grocery store.   “Once I get past blah-blah-blah,” has become the new way I think about time.  And the “blah-blah-blah” doesn’t have to be a bad thing.  It can be a dinner with friends or a party – something that the pre-TN me would be looking forward to with enthusiasm.  (Okay, that’s not entirely true. I’m a bit of a loner so “enthusiasm” is kind of an exaggeration.)  Now, I look to all events with anxiety.  Am I going to be able to make it?  If I go, what happens if my pain spikes?  If I don’t go, will I piss someone off?  I just try to get past whatever it is and land in a safe spot.  Then I plan my next move.

I believe there’s always a blessing in every situation.  So, I guess in this case, it’s that if life is a video game, it’s been rigged to be played for free.  Otherwise, I think I would have run out of quarters a long time ago.

(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.)

“I think you are blind to the fact that the hand you hold is the hand that holds you down.” – Everclear

This.  A million times, this. It’s one of those lines that made me catch my breath when I first heard it.  Maybe it’s because it is at once both simple and profound. Maybe it’s because I think it’s a sentiment that applies to a lot of people.  Maybe it’s because I know it applied to me.

I’m not just writing about TN here, but I’ll start with that.  The impacts of Trigeminal Neuralgia are not limited just to the sufferer.  It’s a family condition. And a friend condition.  It is one of those things that happens in life where you find out who’s really in there for the long haul.  Probably most TNers have been surprised – both pleasantly and sadly – by the people who stick around.

And honestly, it’s kind of easy to understand those people in our lives who go on the relationship lam, even if it hurts when it happens.  We cancel plans.  A lot. We go through days where we can’t eat or talk or shower.  Sometimes all we can muster is the energy to move from the fetal position on the bed to the fetal position on the sofa.

But here’s the thing…I’ve been single for the last five years after being in a long-term relationship.  And I’d be lying if I didn’t wonder (okay panic) that maybe I’ll always be alone.  Yet I’d rather be alone than be with someone who makes me feel worse about having this condition than I already do.  Or someone who gets angry over things I cannot control.  The limitations of having TN plays on our self-esteem enough without having someone else jump on the pile.

Yet there are other ways that we get held down aside from just lack of sympathy. The relationship I was in was with a good guy and we’re still good friends.  Yeah, I know everyone says that but it’s true.   However, one of the main problems we had is that while we walked this earth hand-in-hand, we held each other down. The person we were with our friends or family was not who we were with each other.  And that is really, really not okay.  It’s like we brought out the somber side of each other, and unfortunately, we both have a somber side.  So we were like two “Yins” in search of a “Yang”.  And two Yins creates an imbalance to the harmony of things. Sometimes, you just gotta have a Yang.

There are a million reasons why we both morphed into alter egos with each other, some more serious than others, and I have no interest in airing the really dirty laundry.  And none of them have to do with TN.  I will say that I feel as if I sacrificed much of who I really am to keep the peace and make sure he was happy. I was so wrapped up in making sure he was okay that somehow I lost myself in the process.  And that’s on me.  I created that dynamic out of love, commitment but also fear.  Afraid that if I was more assertive that he would cut and run. Somehow, it never occurred to me that maybe he should have been worried that I would be the one to leave.

Do I regret leaving? No I don’t but that isn’t saying it was easy.  Plus the fact that my TN kicked in with a vengeance shortly after I was on my own was a bit of a buzzkill.  But over time, and in spite of the TN, I have gotten back to a “me” I haven’t been in many years and I don’t mask who I am for anyone.

I still have faith that one day I will find someone to hold my hand.  And instead of holding me down, we both will soar.  (But seriously, if you know someone send them my way.)

(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.)

I’ve got a wedding hangover.  No, it’s not the good kind you get after a fun night of celebrating someone’s nuptuals, drinking too much and dancing to “It’s Raining Men” or “Love Shack” with your shoes off (I’m dating myself).  It’s the kind we TNers have when we once again have to bow out of a fun activity.  The wedding yesterday was that of my cousin’s son and I haven’t seen my cousins in ages.  I was really looking forward to it.  I had my fancy dress ready, found a good “party purse” (you know, not too big, not too small).  I even had a victorious moment when I saw that my feet hadn’t gained any weight and could still fit into my shoes.

But when you have TN you learn how quickly things can change.  I felt pretty good in the morning, but had already decided going to both the church and the reception might be too much of a risk. So my plan was to only go to the reception (of course I chose the part that offered food).  Well, around 1:00 I started to feel it.  I was at about pain scale 5, which for me is my best case status, when the poking sensation started.  Only it wasn’t like something was poking in from the outside, but rather poking out from the inside, sort of like that scene in the movie “Alien” when the monster baby pops out of Sigourney Weaver’s stomach.  Only I had no monster baby (and I totally would have taken pictures if I did).  The Trigeminal Nerve was making its presence known.  I took my second round of meds and a bonus Vicodin with fingers crossed but before long I had the familiar yet unwelcome feeling like there was a balloon in my cheek.  A balloon which was being filled with water, putting pressure on my eyes, nose, teeth, heck everything on the left side (except my forehead – my forehead always behaves).  That was followed by my newest symptom – the feeling as if there is a flame being held up to the outer corner of my eye, not so close as to scald but definitely enough to singe my skin.

“Well,” I thought once I realized the wedding was a no-go, “At least it happened before I took a shower.”  I mean, why waste a perfectly good shower to lay on the sofa for yet another evening?

It’s s vicious circle when someone with TN has to cancel out on something important, and this wedding was something important.  If it was a casual get-together, I wouldn’t be so bummed about it, but this was special.  After my mom passed away, my sisters and I kind of drifted away from her side of the family and spent holidays and whatnot with my dad.  But I miss them.  Plus it was probably a fun wedding.   Then the more I thought about not going, the more stressed I got, which increased the pain, which made me more stressed.   And so it goes.  It isn’t really a shame spiral – I can’t help that I have this condition.  I guess it’s a disappointment spiral. And yeah, a guilt spiral. I hate making commitments and backing out.

I don’t know if everyone feels this way, but I was actually kind of happy that today brought no relief.  It sort of validates that I made the right decision not to go. But I’m still bummed about it.  I even missed out on eating a piece of delicious wedding cake with buttercream icing.  Although, I guess a good thing is that missed out on eating a piece of delicious wedding cake with buttercream icing.   I really do like wedding cake.

(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.)

I’ve come to know many people with TN in the past months (warriors one and all) and each of us have made certain accommodations in our life because of our condition.  Some are clearly significant such as quitting work or moving to a less harsh climate.  Yet others are little things that we do each day to try and minimize our pain.  Taking showers at night instead of in the morning to ensure no splashing destroys our day.  Not eating or drinking certain foods that seem to trigger pain.  Always carrying a scarf just in case a wind – or heck, even a breeze – kicks up to aggravate our delicate nerves.

One of the changes I have made has to do with my hair.  I’ve heard several female TN sufferers indicate that they have cut their hair to make their lives easier and possibly more pain free.  I, on the other hand, have been growing mine out.  It is now just past my shoulders.

For many years I had sort of a bob/China doll hairstyle.  The longest I ever let it get was about chin length.  It wasn’t one of those perfectly smoothed bobs shown on the Vidal Sassoon commercials – I am a person who appreciates jagged edges. The problem with the hairstyle was that I would often wake up with bedhead that could only be described as sculptural.  My hair would be standing up in some places, shifted in different places and sort of bent in a way that could never be reproduced even if I tried.  And due to the gobs of product I use, no amount of combing or flat-ironing could get it any closer to presentable than maybe “crazy bag lady”.  So in order to go out, or even get the mail, I would have to wash and restyle my hair requiring that I aim the blowdryer toward my face to get the bangs right.  And if you’ve got TN, you know that just wasn’t gonna happen.  Plus, if I’m being totally honest, I just got too darn lazy to do it.

So, I’ve grown my hair.  And I gotta say, it feels weird.  It’s like this alien entity has taken residency on my head.  There’s a weight to it that I’m not quite used to.  It looks fine, I think, but it is somewhat distracting.

And therein lies the problem.  I’ve become a flipper.

Okay, there are many definitions to that term, so for specificity’s sake, I’m referring to flipping my hair. I am constantly manipulating it; brushing it back off my shoulders, sweeping it over to one side, twisting it up in a momentary chignon.

And today, while scrunching my hair up on top of my head in a wad while staring at a blank canvas (I take a painting class), I thought, “My God.  I have become Jan Brady.”  I remember watching The Brady Bunch as a kid and seeing Jan, and yes Marsha, constantly flipping their hair.  Jan even had this peculiar gait when she walked; kind of a zigzag motion that made the hair down her back sway back-and-forth with each step.

As I kid, I probably thought it was cool because, even if she was the whiny, attention-seeking middle daughter, she was on TV.  But now that I am 51 and perhaps more self-conscious, it is so not cool.   In face, I think it’s pretty darn annoying.

So I’ve gotta figure out how to handle this situation.  Do I cut it now?  Wait for it to be long enough to donate to “Locks Of Love” then whack it off?  Just keep growing it until it’s long enough where it doesn’t fall forward on my shoulders?

Hmmmm…this is going to take some serious consideration.  I’m just gonna have to move my hair out of the way so I can do some thinking.