One Mother’s view from a slightly different perspective:

Thank you to the friends who held my shoulders, looked me in the eye and said, “You got this. You can and will walk.”

Dystonia hit HARD, right before I was to walk by our son in his senior ceremony. Families are to link arms and move swiftly over turf through the entire lineup in front of a packed stadium. Smile for the camera and support the team heading into their version of a holy grail- a challenge they must overcome to feel like real boys in this brutal game that bears a remarkable similarity to real life.

My entire left side completely locked up, balance took a vacation, and waves of nausea caused a fierce internal earthquake.

My left foot curled painfully, and that red hot knife in the neck spread south, searing my leg from hip to toe. An unexpected cruelty on a night so important to our kids.

The last thing I wanted to do was draw attention or become a burden by freezing up during such a crucial time. I had to figure out a way to move, fast. Nothing like this had happened before and without a frame of reference or coping mechanisms, I felt completely alone and dangerously ungrounded in the busy crowd.

Dystonia is like being hit repeatedly with a 2 by 4 while trying to get up from an already harsh spill…only here I was surrounded by an audience who could not see the 2 by 4 attacking. No one can.

One of the things that I don’t like about having a progressive incurable disease is the blindsides- a string of complex agonies covertly turning an active body into a cage, forcing me out of the precious moments relatively healthy people can enjoy.

Even if you tell peers and your kids that you have Parkinson’s, they don’t have any idea what it means to “freeze” in a pivotal moment. It is terrifying in public places, and the stadium was jammed in like sardines. A cacophony of loud screeching and excitement, blurred movements and palpable tension.

Lions and gladiators.

My terror did not rise out of any concern for public humiliation, nor the indignity of my seemingly fit, healthy frame collapsing on that field. No, this had nothing to do with me.

My fear was that seeing me limping around with swollen red eyes, struggling to walk and possibly falling would negatively impact our son on the biggest game day of his life. On any other day I would’ve just quietly limped home or found a private place to sit until the carbo-levodopa medication kicked in. No big deal on any other day.

Crowds and chaos brutalize PwP’s (people with Parkinson’s) and we can’t recover quickly in most scenarios. Stress provokes negative responses that set off an avalanche of symptoms.

I stood on my foot until it uncurled, and steeled myself. This was for K. (Parkies and Dystonia peeps, you know exactly what I’m talking about!)

The last two sets of eyes I remember seeing belong to Katy Kearney Parker and Scott Warren, though a team of angels hovered to prop me for this moment.

Never underestimate the power of a touchstone to help you up, brush you off and bring you back into your body. You don’t have to have an incurable brain disease to know the crippling dread of things falling apart at the worst possible moment.

Who are YOUR touchstones?

Touchstones are key to surviving and thriving, but not to be confused with TOUCHDOWNS… Way to go DONS! An unbelievably exciting game that had the stands stomping and howling like banshees.

I stood across from our son in that line before the game and I thanked God and kind humans in our wild Universe, like Janice (Will Workman) for offering a hug and sharing soda water when I could barely stand.

We have all been through things that brought us to our knees, but when my boy approaches with his infectious smile in shiny uniform to hand me that red rose, you’re damn right I’ll find a way to walk by his side.

Love you Kagey. Bows to all.

This post is open for the purpose of Parkinson’s awareness. Regardless of what you may think of me, I ask that you respect my children and acknowledge a bit of what they are going through.