Acep Hale


Hope is my enemy

If you ever have a stroke be prepared for an absolute flood of stories about people that went home in three days 90% healed or woke up one morning, months or years later, completely cured. The head social worker at the hospital informed my wife there was no need to worry about the stairs in our building because soon I'd be literally waltzing up and down those very same stairs in just a few weeks. That was six  months ago. Just last week a neurologist said I didn't need pain meds because my pain was just my nerves growing back, he prescribed Tylenol. (I'm not trying to complain here, but my pain feels like fish hooks being inserted under the pads of my fingertips, all along my fingers, between the fingers, etc etc, over and over again, all fucking day long. And that's just the hand. Tylenol is like applying a band aid to a severed arm.)

 Dr. McHenry says that people with central pain need to unite and advocate for pain research. “Living with central pain is like living in a kind of Auschwitz. You are tortured constantly. No one in America would allow people to go to a place like Auschwitz ever again. If they knew the reality of the lives of central pain sufferers, they would not allow it.”   
Central Pain Syndrome: Treatment

Following the movie Fight Club it's become popular to say, "You are not a special snow flake!" A stroke slaps you hard in the face with the reality that everyone's brain is completely different and every stroke and the recovery from it is therefore also completely different.The stories people tell you, while meant sincerely to encourage you, are completely and utterly useless.

I was very lucky that I studied Brazilian Jiu-Jitsu before my stroke. Being on my back and overwhelmed by a much larger and much more skilled opponent day after day quickly taught me that struggling wildly against them simply wore me out, exhausted my muscles, and encouraged a feeling of helplessness that was deadly. Instead I learned to force myself to relax, breathe when possible, and wait for my chance to explode. To learn the art of waiting while completely overwhelmed was crucial for me. When it finally dawned on me that I was having a stroke and quite possibly dying I clearly remember telling myself, "Alright, you can't do anything about this. Relax, Breathe while you can." This has been the greatest gift BJJ has given me. I credit it with saving my life, in fact when the neurologist in the ER came to see me after my brain scan he looked at me, looked at the chart, looked back at me and went, "Mr. Hale?" I told him he was absolutely right. "I'm sorry. I thought based on these results you'd look much, much worse than this."

Constantly as I've gone through the recovery process this very same lesson has guided me, right up to this very day. My pain, while not clockwork steady, goes in a three day cycle with the third day being the worst. I no longer fight wildly against it. I prepare for it, have interesting documentaries cued and waiting, and then once it's over I explode for the next two days. I write on those days, stopping periodically to exercise and stretch as much as possible. I exult in feeling the summer breeze caressing my skin without triggering a burning in my elbow. I contemplate the oak tree in front of our apartment, in fact if there is a gift this stroke has given me it's the gift of contemplation. I research as much as possible so I can build up warehouses of information to ponder while in the midst of the pain, reading while in that state being damn near impossible. Thanks to Al Park I have included yoga nidra and zhan zhuang into my daily practice which has been extremely helpful because even in the midst of a full blown day of torture I can work on them, sometimes to a limited degree, sometimes temporarily conquering the motherfucker. And I indulge in those victories, they may be so small only I can see them but that's all I need.

I am extremely bad at doing nothing. Always have been, so it has taken me months to finally acknowledge its importance. I now say on high pain days I will get nothing done, so that anything I do accomplish feels great, like a big middle finger flung into the face of pain.

This is why I say hope is my enemy. In the military I learned to prepare for the worst and be surprised by the best and that's what I'm doing. There will be no magic pill, no divine intervention. This will suck and it will suck bad. Every morning I follow Seneca's advice and list every way the day could go wrong just so I'm not surprised when it does. While I was in the hospital I listened to Duncan Trussell's podcast, and his interview with Tim Ferriss had me howling while  laying out the Stoics in the way only Duncan can. For months my wife and I have looked at each other and said, "A forest of cunts." It makes us laugh every time no matter what is going on. (You'll just have to listen to the podcast)

Fuck hope. I'm going to work.