Tag Archives: hydrocephalus

Wearing Broken Shackles

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In 11 days, I will plant a stone marking 20 years since I last rolled under the blinding white lights and into the chilled, antiseptic air of an operating room. Two decades without a daily reminder of what’s always waiting in the shadows, ready to strike. 240 months spent tetherless and free. 7,300 mornings not wondering if I’d end the day how I started it.

Sometimes it gets harder to remember…really remember. I suppose I should be thankful for that visceral absence, but the persistent big-picture long-term impact of wirewalking above a sea of hungry sharks never sits far from the surface, and the shrapnel left in the wake of a detonation is almost impossible to completely clean.

Still, I wander through middle age as curious and confused as ever, albeit without the nasty neurosurgical albatross adding even more unmanageable weight to an already struggling neck.

The monster may not be lurking in plain sight, but he’s always under the bed, plotting and planning.

Real repair has proven to be an elusive, moving target. An endeavor filled with far more hope than tangible solutions. One step forward, a thousand steps back.

An unambiguous, inconvenient conundrum stubbornly stands in my path as a wedge to sustained emotional health. How do you rewire all the fried circuitry without losing the solid soldering?

This has always been the question…and the problem. 

I am beyond grateful for the privilege of no longer spending countless nights cursing my station and desperately sprinting down blackened tunnels in search of a distant glimmer.

But with that freed hard drive space comes a bevy of compulsions, neuroses, and the itchy sensation that there’s never a big enough broom to gather the broken shards. Still, I sweep…and sweep…and sweep.

Twenty years is a long time. But those falling calendar pages have also accompanied far too many internal deep dives into the dark. 

I’m immensely proud of the courage (and maybe recklessness) it took to roll the dice on a procedure that had the potential to stop all others, even when the prior swing at the same pitch resulted in a mega miss. I was ready to risk losing all my chips at the table if it meant I could have my life back.

My surgeons, nurses, therapists, and support circles were beyond belief. So many pieces had to fall perfectly into place, and that took a tremendous amount of planning, strategy, and preparation. It’s still surreal to think about the number of spinning plates sitting at the top of some very lofty sticks.

Modern medical miracles of science met human aptitude and artistry. 

Regardless of all the rough edges still in desperate need of smoothing, it was a feat of unimaginable skill, capability, and compassion. 

I was a lost soul without any hope of being found. At least I now have the time and opportunity to continue the search.

Adolescence Interrupted

Dropping Shoes

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falling1

“Western man has tried for too many centuries to fool himself that he lives in a rational world. No. There’s a story about a man who, while walking along the street, was almost hit on the head and killed by an enormous falling beam. This was his moment of realization that he did not live in a rational world but a world in which men’s lives can be cut off by a random blow on the head, and the discovery shook him so deeply that he was impelled to leave his wife and children, who were the major part of his old, rational world. My own response to the wild unpredictability of the universe has been to write stories, to play the piano, to read, listen to music, look at paintings—not that the world may become explainable and reasonable but that I may rejoice in the freedom which unaccountability gives us.” ― Madeleine L’Engle

The headaches are back. They’re not the “bad” kind, so I guess they’re simply the “new” kind. Either way, a giant debilitating pause button has surfaced, and after far too much research and straw grasping, I’ve decided they are best classified as migraines.

Now I’ve always touted the fact that I never got migraines, and I even specifically mentioned it in my book. It seemed more than fair that after all the brain-based obstacles and excruciating pressure pain endured from the complications associated with hydrocephalus that I would be spared any additional suffering once those symptoms retreated. But that’s just not how life works.

We can plan and plot and cross our fingers that once we emerge from the flames, the fire can’t catch us. But whatever is burning behind is also burning ahead. Living is navigating, and no amount of precaution can halt the birth of unforeseeable variables. Duck and weave. Jump and slide.

There is no crystal ball, and no chance for a second take. The cards slid from the dealer are the result of universal randomness and haphazard order. We can play or fold, but the odds won’t transform with a fresh deck.

So instead of analyzing all the ways we might lose if the fates decide it’s not our day to soak in the sunshine, let’s just pull up a seat and roll the dice.

Adolescence Interrupted