I have a medical condition that everyone in my life either doesn’t know about, or they don’t understand or care.  I have excruciating pain daily.  For the last ~20 years, pain is normal for me.  Very few things relieve the pain and many things exacerbate it.

Trigeminal Neuralgia.

Rather than try to explain it I’ll just let you look it up and I can try to explain how it came about if anyone wants to know, but that doesn’t matter.  I mean it changes nothing.  There is a cyst  on my brain and that’s it. Its sitting on a nerve connected to my face and  it can be triggered at any time.   Maybe I was born with it and it got aggravated by my TBI or maybe it was a side affect from my head injury.  The doctors have suggested both theories but again, the why here changes nothing.

I have never actually been stabbed in the face with an ice pick, so I cant say for sure that is how it feels, but if there were any way for me to prove or quantify it, I’d guess that’s a good estimate. The most concentrated pain is when I am laying down, in my ears.  It shocks my whole face, and mouth and eyes, through my ears  – one at a time, if that make sense.

My MRIs look like spider webs from “migraine scars”.  The neurologist put it on the wall and acted like I should realize how crazy it looked.  I’d never looked at one before, I had no clue.  He was “amazed”.

“What  do you do for  the pain” he asked.

“Nothing” I said, “I just wait for it to stop, and I mostly don’t sleep, and sometimes I run for 12-24 hrs, because there is no pain when Im running.”

When other people have headaches or pain or concussions, I feel mad at them.  Just being  honest.  I have anger over it. The people did nothing wrong, I just feel mad.

There is no way for any of us to really feel anyone else’s pain  or know what it is like.  Science is all guesses and the simulators that are out there may be close but who knows.  Someone down the street or sitting right beside me might be experiencing something worse.  How could I ever know.  Pain is invisible to everyone else and hard to really have true empathy for.

I don’t take medication (that’s a whole other story) and I have opted not to have the elective surgery where I’d have to sign something that says its ok if it kills or paralyzes me.  I do drink a fuck ton of coffee and plenty of alcohol.  The only other relief I have is running.  But I haven’t had time for that in a long while.

Light hurts.  Sound hurts. And I hate to be touched.  I know that doesn’t make sense, how you touching my arm or my back would hurt my face, but it does.  Just trust me.  Something about the way I tense up before Im about to be  touched or when  I’m reacting to it, sends waves of intense pain.   Its like constant pressure though from basically everyone.  Culturally, people think that if they want to touch you, you should let them and they actually make you feel bad or weird for not wanting to be touched.  People look at me and assume Im pissed or thinking something when Im probably just in pain and trying to tolerate the laser cuts of their voices through my skull.  “What” they ask?  “Nothing” I respond.  Think back to when you were a little kid, “Give your Autie Whats Her Face a hug”

Anyways….

But there I am every day, in the light, with the sound, being  touched.  Wanting to be left alone.  But usually smiling.

I don’t hate most people.  I like them or at least feel bad for them and would like to help them, but I am tired and sometimes mad.  Today Im mad.   As Im writing I am mad.

But I’m really not an angry person.  I used to be only loving and happy.  I fight the anger now.  I  guess they say pain causes depression and anger is how  I process sadness.  I guess.  Thats a story for another day.

Today I feel over looked and taken advantage of and underappreciated, and, well, in a lot of fucking pain.  Just ‘sharing’  I will be fine tomorrow and want to delete this.

I am not sure why I shared really this today.  I am not a fucking victim and  I don’t want you to feel sorry or bad.  I just want to be left alone and not be lonely.  Not sure how to solve that one.

I need to start running again.  When people ask me (over and over), How can you run so far or for so long?  Just know, that if Im on the trail for 12 or 24 hours, that is 12 or 24 hours of no pain and no having to be bothered or fake.  For those periods, there are no emails or phone calls or texts or faces with looks of expectation.

Maybe tomorrow.  Tomorrow is a gift.  Tomorrow  I will run.  My next #ultra is in 75 days.

Queue Fake It by Seether.