The shadowboxer *amended

I have been tentatively diagnosed with trigeminal nueralgia. It’s a clinical diagnosis, meaning they won’t know for sure until we rule out everything else, but the signs are pointing to this baby as the likely cause of my issues.

Trigeminal neuralgia is traditionally called the suicide disease because of it’s recurring, unpredictable, and intense episodes of explosive pain.  I have decided to rename it “The shadowboxer”.

When I was just out of high school I got a job working at the Wendy’s on Colfax and Emerson.  Each day during my shift this homeless man would walk past the windows in our “sunroom”.  He was always boxing an invisible opponent, which on east Colfax isn’t the most uncommon sight ever.  However, I would see this guy get hit back by his invisible opponent.  His head would snap back, he would buckle at the stomach, sometimes he would even get knocked down.  Every time he would stand, reposition into fighting stance, and keep on punching.

Well now I have an invisible opponent of my own.  I get hit or kicked in the left side of my face several times a day.  The rest of the day I spend feeling as though my face has a headache.  My left cheek always hurts, my left eyebrow is sore to the touch.  I have decided I will also continue to stand up, reposition into a fighting stance, and keep on punching.  Hence the name change.

I never know when these boxing matches are going to occur.  The wind can set them off, sounds can set them off, trying to sleep on the left side of my face can set them off, chewing can set them off, etc.

To be frank, I am terrified to leave my house.  I don’t want to become an agoraphobe, but the thought of being out and about when one of these matches comes on is scary.  I am embarrassed by them, they turn me from a smiley fun person into a tense curled up ball of pain and misery.  They make me cry.  Sometimes they hurt enough I have to bite onto something to stop from screaming.  So imagine my horror at the thought of doing this at a party, during the class I teach, while picking my children up from school, etc.  I don’t cry in front of people easily.  I hate crying in front of people.

So, how did this all come about?  Why the sudden change from headaches to the Shadowboxer?  It turns out that people with trigeminal neuralgia can be misdiagnosed as having migraines for a long time before the traditional symptoms manifest.  It also turns out that trauma can cause an onset of otherwise dormant symptoms.  Well, three or four weeks ago I fell on the ice and hit my head.  Three or four weeks ago a tow truck ran a red light and T-boned my car.  I have no medical training so I don’t know if that is why I am suddenly where I am, but I can tell you those events coincide with the pain timeline.

How can you help?  Please don’t offer me advice, unless you have trigeminal neuralgia.  Please do offer me love.  Please let me know if you have somewhere I can retreat to at an event you are inviting me to, if an attack occurs so I don’t have to worry about embarrassing myself and everyone else at your party.  Please reach out to me, visit me, send me notes.  If I cry when we are talking, please just let me cry.  Please don’t tell me how much better it’s going to be.

Trigeminal neuralgia has been described as one of the most painful and debilitating diseases in existence. I got to have that conversation in the medical office when your doctor looks at you, puts on his “Bad News” face, and says “I can try medication and if that doesn’t work, surgery, but if this indeed what you have, it’s a lifelong, debilitating condition”.  So I am not really wandering around feeling like things are heading towards better.

What I need is the ability to express that.  I understand the first knee jerk reaction to someone saying life sucks is the sun will come out tomorrow.  I get it.  It’s a reaction I initially have too.  However, a good friend of mine long ago taught me better things to say.  Here are some examples, if you ever find yourself at the opposite end of anyone facing anything like this, like me.

1.  That sucks, I’m here for you.

2.  I love you.

3. I am sorry things are so hard for you right now, let me know if you need anything and I will try to help.

4.  Hug

5.  I will totally come hang out with you where you are the most comfortable.  I will not be mad at you if you can’t make it to my parties etc.

6. If you want to spend the day watching movies in bed, I will come do it with you.

7.  I will not be embarrassed if you have an attack while we are out.  I will try to get you somewhere you feel safe and I will wait it out with you. Fuck everyone else in the room, they can just deal.

Also Please bitch to me about the things that are going wrong in your life.  I don’t care if you think I am worse off, I care about you and I want to be a person you can talk to. 

Believe me, “well that sucks” is exactly what you need to hear sometimes.  I am working my ass off to get better, to stay cheerful, to keep going.  In the morning I start the day with Pink’s Try, because I do just have to get up and try.  Every day.  When it hurts too much I curl up with my mom or dad or cat and I cry.  I am doing everything I can to get better physically and to make it through this mentally.

But I need you guys.  I do.  I just can’t always go to you, call you, make contact with you.  So please continue to love me even as I seem to disappear from your lives.  It’s not my intent to leave you.  I just have a really scary new opponent in my ring and my match is far from over.

5 thoughts on “The shadowboxer *amended”

  1. I wish there was a way to tag in and help you fight. I love you, and I am amazed every day by the strength and devotion you have to making the most of every day no matter how rough it is on you.

  2. Misty I am happy to offer you love. The only other time I heard about this disease or condition was from Matt. Know that I am thinking about you and sending you love and light. Remember the dignosis is tentative. I must confess I have little faith in many of our medical establishment’s diagnoses and treatments. I do have faith in people though and I have faith in you.

  3. Savvy Spoonie – 1432 Blake Street, Denver CO 80218 – I am an artist, writer, jeweler, and a Spoonie. Before becoming a Spoonie I was a very busy high achieving attorney and advocate bent on saving the world. Now I'm struggle to redefine my life to fit within my reduced energy level. Some days are better than others. I have fibromyalgia, trigeminal neuralgia, and chronic daily migraine.
    M.E. says:

    Thank you Barb, Kodi. I appreciate the love.

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