Life is full of unexpected twists and turns. Around Thanksgiving a year ago, I had some dental work done. Ten days later I began having severe headaches. On December 8th I nearly blacked out at the supermarket. A few days later my PCP ordered an MRI. Between Aetna Death Panel games and scheduling delays, it wasn't until December 18th that I got an MRI. My headaches worsened. Fortunately, aspirin completely stopped the pain. Over Christmas I developed a middle ear infection that impaired my hearing. My doctor was on vacation and his nurse said the MRI results were not yet available. "Just wait", I was told.
Pain is a subjective matter. Doctors usually ask patients to describe their pain on a one to ten scale. Having been a runner and a cyclist, I assumed that my tolerance for pain was above average. What I had been reporting as an eight on the magic pain scale clearly did not leave enough room for the new levels of pain I was experiencing. On Christmas Day I woke up at 4 AM with a pain so intense that I barely made it to the bathroom. Merry Christmas, I thought to myself as I downed some aspirin. Once again it cured my pain completely after 20 minutes of agony. Like black being the new red or whatever being the new whatever, that pain was the new eight. It couldn't be nine or ten because any level of pain surely could be exceeded by an even greater level of pain. It had to be eight, right?
A few days later my doctor called me in to his office to follow up on my condition. He said the MRI report mentioned the possibility of an Intradural Venous Sinus Thrombosis - a blood clot in the brain. Hillary Clinton was suffering from the same condition then, though from a different cause, possibly dehydration which literally thickens the blood, making clot formation far more likely. I suspect she got superior medical care in a more timely fashion than I did. Anyway, my doctor ordered another MRI, one designed specifically to image the veins in the brain. My headaches worsened. Another new eight emerged. I began having memory problems. My cognitive skills eroded. I began seeing an internal light show when I closed my eyes. The next day I got the report. I was told to go to the ER immediately. I had a "large thrombosis" in the transverse sinus in the left side of my brain.
My world was getting real in a hurry. I was advised to update my will and take care of other practical matters, just in case. A ringing in my ears began. My vision seemed like everything was processed with some creepy Photoshop effect. Contrast and color saturation were enhanced. Lightly touching my closed eyelids amplified my already crazy, personalized Pink Floyd light show. Trust me, you don't ever want to hear the words "You are an interesting case" from any doctor, let alone a neurosurgeon. "Hmmm, I'm surprised you're not convulsing. You're lucky you aren't dead. The Vein of Labbé is occluded. There is no flow signal in the transverse sinus, through the sigmoid and down to the jugular bulb".
To cut to the chase, powerful antibiotics cured the infection ravaging my transverse sinus from the outside in. Powerful anticoagulants got my blood chemistry to a point where the clot would be less of an immediate danger should pieces break off. The headaches dropped to a three, spiking to five occasionally. Was that a new five? On the fifth day in the hospital I was sent home with Warfarin Sodium, an anticoagulant often used as a rat poison. On my next visit to my PCP, who advertises on the back of a bus, he pronounced me miraculously lucky to have such a happy ending.
Happy ending? According to my team of doctors, it was a happy ending. Parietal and Cerebellar deficits would disappear over time, they assured me. There were only minor pinpoint infarctions noted in Venograms. So why did I feel this was neither happy nor an ending?
I researched neuroplasticity and worked hard to recover what I lost. Balance, memory, cognition all took a hit. I religiously did the exercises my therapists prescribed and I made up some of my own. This included learning new things, like neuroscience. My work is technical in nature and it still takes me longer to do the same things I used to do. I've learned tricks to help me work around my deficits but things are not right. It really bothered me that doctors told me I was lucky to make such a great recovery. Really? I had lost something. Parts on my brain were damaged. I had symptoms of stroke and traumatic brain injury. Pain. Motor problems. Anxiety. Depression. Who were they to tell me that my recovery was so amazing?
In February, still reeling from my experience, my wife of 39 years was sexually assaulted by a neighbor. A rich neighbor. It was he-said-she-said. You get the picture. This, and I suspect her stress from worrying about me, was a trigger for the trauma that she experienced as a child when her mom was murdered on Valentine's Day. Yea, handguns have been a problem in America for a long time. At that time my wife's father began sexually abusing her. Having never been satisfied over the years with her mental health treatment for her twin traumas, I immersed myself in an education about mental health treatment in America in general, and her condition in particular. This reading was one more exercise in my own therapy. I purposely strayed far from my comfort zone. For the first time her condition began to make sense to me. And I began to realize how off the mark most of her therapists and doctors had been. Proper treatment will be available to her once again in January, thanks to President Obama and ACA. Aetna had refused to underwrite her health insurance back in 2009 because, and I paraphrase the Aetna nurse who followed up on the insurance application, "sex abuse is a pre-existing condition".
Words do not come as easily as they used to. In March I wrote and delivered a eulogy for my brother who was found dead after having disappeared ten months earlier. I struggled mightily to find the right words, words that might give meaning to his life and death, to give comfort to his wife, kids, siblings and friends, if only temporarily and in the limited context of a memorial service. I don't know to what degree I succeeded or failed. Feeling an obligation to my brother, I got advice from a therapist on grief counseling and I immersed myself in that subject. I still communicate often with my brother's widow. While it is hard and painful (I have not learned the professional tools to detach from the pain of others), my sister-in-law says our communication helps her a lot. However, I feel that I got the better end of the bargain. I learned much about my brother that I did not know. And in so doing, I learned much about myself.
A year has passed since my intradural venous sinus thrombosis. Through introspection and humility I realized just how fragile life is. Not just the breathing, eating, sleeping part of it, but the living part of it - the working, growing, thinking, feeling part of it. A simple, botched dental procedure and poof - life changes. The pain is still with me, sometimes spiking to level five. A peculiar dream-like sensation haunts my every waking moment. Through the looking glass. Weird has become the new normal, just as old eight became the new eight.
The silver lining in the cloud of damage that I suffered is that the right side of my brain is intact and I have adapted to much of the left-side deficits. The right hemisphere seems to have over compensated in a positive way. Creativity was always a source of strength for me. I drew, painted, composed, performed and wrote. Now creativity it is my salvation. Now colors, shapes, music, words and feelings have new power. With that power I feel a new responsibility. I hope that soon I will have recovered more than I have lost. I hope that I can then share what I learned about healthcare in America. About helping the grief stricken. About helping a loved one get the help they need. About surviving.
Yea, politics matter. What we do here matters. What we do for others and what we allow others to do for us matter most of all. And if a sticky, two inch long blood clot in my brain led me to realize that healing ourselves and each other, from whatever ails us spiritually, physically or mentally is one of the magical privileges of life, well, then, I guess there was a happy ending after all.