Monthly Archives: December 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.)

“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.”

(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.