Monthly Archives: July 2015

(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.)