I’m getting business out of the way first. I’ve had 2 more neurosurgeries. I have neuromodulators in my face. One on each side of my face. My son says I’m a cyborg.

 

I should be so cool. 

Only if I had at least one eye that shot lasers or glitter. That would make me a real cyborg. He wants the laser. I’m opting for the glitter. The “hardware” are wires that go along the trigeminal nerve along my jaw, through my cheek, and through my forehead. They wrap together at my ear. One band goes to my brain and another goes down into my chest wall where there is a battery that keeps the whole shebang working. I get to recharge my batteries once a week for an hour each. I lay still and put this  large, round, rubber, circular contraption over the surgical site that picks up the battery’s signal. I’m thinking, “where’s the Bluetooth??” 

I am at 80% pain relief in my cheeks, teeth, lips. Fucking unreal. Now I’m waiting for researchers to get a move on to find something to help TN behind the eyes. 

Enough getting down to health business blahblahblah... 

I have a car now. I drove down the road for the first time and my thought was, “this. is. freedom.” I had almost lost that piece of myself. So many pieces buried. Sometimes they pop out. Let me know they’re still present. That I haven’t destroyed them. Or the illness/pain didn’t strangle them. That happens. I understand how it happens. I’ve never lost hope that I will get better because I won’t ever stop looking for treatment. 

Take THAT Bastard pain. 

One thing I find I struggle with is finding purpose. I was a clinician for years. Since 7th grade I knew that was my journey. Once illness hit, my practice was permanently closed in 6 months. People immediately ask me now about work now that I’m better. As if that’s all we are. Some title. A paycheck. I loved what I did. I miss it but I know realistically I’m not well enough to work. I do know I have my life. I have love. Determination. Loyalty. Expression of emotion. Intelligence. Humor. So many other things. Illness doesn’t take that from you unless you allow it. Its complex. It’s an achingly slow process but ultimately you have to decide if you choose misery or joy. 

I choose joy. 

Surgeons did a good job!!