The best way to become a god is to disappear. To be silent, unspeakable. In not saying something I fear I have created a false god and I’m here to dispel the power, to say the words and stop believing. Or start. I don’t even really know what the eff I’m doing with this but I feel the need to fill in the blanks. You Hid, Waiting Here.
People have asked me how or why I am so open on this blog. Anxiety attacks, getting laid off, the fact that I have a flat ass, my relationship with my mother. You’d think I’d need a speculum to be any more open. But there is one thing I haven’t written about, one giant pachyderm standing in the middle of this blog and I cannot ignore it anymore. I’m stalling. But the floorboards are creaking from the weight and everyone knows that elephants return to bury their dead.
I will start with the facts: My step-father has multiple sclerosis. His name is Allen. I have known Allen since I can remember. He was my father’s best friend. Growing up, I would go out in the Pt. Reyes estuary with them, netting for clams. Or lobster. Something, I don’t know. All I know is they would bring chocolate bars and when we pulled up the net we would guess how many whatevers were in the net and I always won. Now I know that they let me win. I would sit at the bow of the boat and feel such peace knowing that those two men with big 70’s beards were good. Life was good.
At some point my dad and Allen had a falling out. Then my parents got divorced and it was ugly. War of the Roses ugly. Allen sided with my mom and things get a little mushy here. Allen was diagnosed with MS but he was still strong. Still bearded, a contractor who made jewelry. An artist who could figure out how to fix anything but his rapidly scarring myelin sheath. My mom and Allen got married. They bought a house and renovated the downstairs just in time for Allen not to be able to walk. Yield! Halt! Wait! Here!
This is getting much too wordy. The thing is I could write this story a thousand and one times in six different languages and I still wouldn’t get close to the truth of what is happening.
Just the facts: Allen is now a quadriplegic. He lives at home with Fijian caregivers while my mother lives in the city in a tiny apartment close to her work so that she can pay for it all. Before he was in a wheelchair Allen used to tell us he would kill himself when he lost the ability to walk. Then he did and he said he would die when he lost use of his hands. Then he did and now his voice is a whisper, his lungs shallow with oxygen from lack of movement. When he speaks I can hardly hear him and yet he is not dead.
The tragedy of this is what is unspeakable. I cannot wrap my head around the why and so, in its own way, it has become my god. You Had Waning Hope. I don’t know how to deal with it and so I go numb. I tingle. Literally. I tell people I have panic attacks and anxiety but that is really just a quick explanation for what is really happening. What is really happening is this: I get MS myself. I drag my foot. I cannot walk. Doctors and neurologists have examined me and there is nothing there but fear. I am a hypochondriac with a specialty, a head case, my own myelin sheath shiny and new, the wires in my brain a twisted tangle of what-the-fuck. If only I could use this power for good I would be able to bend spoons, to lift cars. I would be able to cure the ill. But I can’t so I take a tiny peach pill that makes me remember: I am healthy. He is not. So many many people are not.
Lately Allen has been in and out of the hospital. A bowel obstruction. Bladder infections. Pneumonia. Sepsis of his blood. Small maladies that pull at his dignity, this man with a beard who gave me chocolate for guessing how many whatevers were in the net even when my guess wasn’t right.
MS has torn my family apart, rendered us all paralyzed in a way waiting for what comes next. Allen will die someday not because he lost use of his legs or because he cannot move his hands. He will not die of his own accord. He will die because a cut on his foot won’t heal or because his bowel muscles won’t constrict to poop. He will die because of some insipid fuck-ass neurological disease, a disease that I don’t have but somehow sometimes convince myself I do because I don’t know how else to help.
And when Allen does die I can only hope that I remember him for who he is and not for his disease, this big terrible tragic god that invaded his nerves and our lives. Allen is a kind man who loves fixing clocks. A man who loves peanut butter and animals, plays on words, an artist who made the most beautiful jewelry years ago when his fingers moved like butterflies.
I was so afraid to write about this. It’s too real. Writing about it makes it all too real. But if I don’t write about it it becomes bigger and my toes, they tingle.
Today is Wednesday. There is nothing special about today. Allen is not in the hospital right now. And so I begin to write this knowing full well I will never get to the truth. It is what it is. Just the facts. Allen has MS and I do not. We are all dying and thus we spin gods from yarn and twigs. Why? What is the meaning anyway? There once was a god so sacred it was forbidden to say his name out loud. Yoo Hoo! Woo Hoo! Because the people weren’t allowed to say his name the correct pronunciation has been forgotten and we are left with just the letters. Y, H, W, H. But some of us are tired of waiting, and so we have to make up the name ourselves, in a language bereft of signs and symbols. In a language only we can teach ourselves. Y, H, W, H. You Have Wounded Him.