Steroids, Fog, Little People & a 22K

Six years ago I sat on the sofa alone with chemicals being dump into to my body.  A needle stuck into my vein, a tube sending clear fluid into my body, a bag of steroids hung atop a stand next to me letting gravity do its work. This ritual was repeated twice a day for a seven day stretch at a time.  What do I do while this outer-body experience slowly takes over my consciousness? I read a novel by Murakami, “Kafka on the Shore”.  Murakami writes in a subtle and surreal style that blends mundane and fantasy into a single thread; they are the perfect words to explain the altering experience of having chemicals shift your waking reality.

Over the next years the on-again-off-again experience of having mass doses of steroids dumped into my body would occur, almost seasonally it would seem. I would read a Murakami every time.  As the interior of my body would go on an unwanted journey I would give my mind a welcome journey of reading a book.  It was a simple recipe for getting through steroids: drink lots of miso soup, hold 25 minutes of meditation while laying flat on my bed and a Murakami novel to surrender my thoughts to. This became my cocktail of choice to survive the subtle and surreal madness of steroids.

After I finished the complete works of Murakami I decided “that’s it”, no more steroids for me. As a matter of fact, no more daily injections of anything. I even placed the Tylenol back on the shelf.  Bring on an attack, bring on an exacerbation; I will go solo fighting this disease.   No more chemicals, no more medicine. Just a glass of Scotch now and then to keep the demons at bay.

Then it happened. The attack.  Friday night at 1:55am, fast asleep, little people climb inside of me. Down my throat, they pass my heart to settle inside the middle of my spine.  They pull out a taser, the kind police use at riots to shock the unruly into submission. The little people start zapping and shocking my spine with large amounts of electricity. I convulse, I clinch all the muscles in my body at once, I flop around back and forth thinking of the image of a man in the electric chair. It’s like that but I’m lying in bed flat on my back. This goes on for three minutes, then the little people stop.  I lay there, breathless, scared, aware of the pummeled totality of my insides. I can feel not only my heartbeat but the entireness of my heat. I can feel the the complete circumference of my heart, I can feel the whole of my lungs, I am aware of all the organs in my chest, they all sit there as if they were placed there as foreign objects.

I wait for the little people to start attacking again, they do not, thankfully. It’s been months since the last attack and this assault was stronger than the previous ones.  At 2:55am I notice the clock. All quiet. The little people must have left. My breath slowly shallows and I drift off to sleep.

I awake at 7am. Zombie mode: not alive, not dead enough, have enough strength to drink coffee and stare out the window at the fallen leaves that cover the lawn.

Two day later I leave my house to go for a run, the little people have not returned in 48hrs. This is a good thing. I get out of my car and step onto the path.  I take the photo above and think to myself,  “Running into the fog is the perfect metaphor for living a life with a disease. I’m either running into the fog or out of the fog; either way I keep running.”

This Sunday I will run a 22k trail race to help raise awareness/funds for Neuromyelitis Optica (Devices) Spectrum Disease.

Started reading a new Murakami novel “1Q84”