How does the creature say "Thanks"? A story and a poem
In June after I graduated from Seminary with an M.Div, it was time for my six month exam with my primary care physician. He looked me sternly in the eye and told me, "Therry, you just turned fifty-two, you are going to get a pneumonia shot, and I DON'T WANT TO HEAR ANYTHING ABOUT IT!" He'd been my doctor for twenty years, he knew very well how I reacted to needles. But I was tired, so I didn't say a word.
Started on Copaxone
In the examining room, the nurse was waiting for me. She swabbed my upper arm and did something else I didn't notice. About five minutes went by, and I was shaking in anticipation of the jab. She asked me what was wrong, and I asked her when she was going to give me the pneumonia shot. She started to laugh. "Oh Therry," she said, "I've already given you the pneumonia shot, and I gave you a flu shot AND I updated your tetanus. You're fine, I'm done." I demanded to see the needles, and they were so tiny, that I decided to call my neurologist and talk to him about starting a DMT. He put me on Copaxone, and I've been shooting up for twenty years this July.
My diagnosis changed from SPMS to RRMS
The thing is, once I started Copaxone, my secondary progressive MS started progressing the other way. After six weeks on the shots, I had a follow-up appointment with my neurologist. And it was the best exam I had had in years. The Copaxone was not only managing exacerbations, somehow I was regaining abilities and functions I had lost in the first twenty-two years I had lived with MS. My diagnosis was changed from Secondary Progressive back to Relapsing-Remitting.
Truly confusing to process
So how do you live with a new diagnosis like that? I had gone to seminary to digest the news of the Secondary Progressive diagnosis, but I had just finished seminary. At the time Peter Brooks' Mahabharata was showing on PBS, and my husband I were avidly watching this brilliantly produced classic Hindu Epic on PBS Television, taping each episode on VHS machine. Soaked in the imagery of the sights and smells of this epic tale, I tried to write about my feelings, never easily available to me, and truly confusing at this time.
Let me share what I wrote about this new pathway my brain and my immune system were creating for me:
In the marketplace, smell of fire and garam masala,
Colors to burn your eyes
The twins carry a gutted lamb on a pole,
Its feet tied with flowers, its sides knotted with ribbons.
Women laugh and chant for a hennaed boy, dancing like a girl
(They do not know it is Ardjuna, perfect warrior)
Bima conceals himself in plain sight
Dark Sun hidden in cooking chana dal and raita
Ganesha and Krishna watch the exiled brothers.
And where am I in the midst of sons of gods?
My skull is traced with lines of henna
Gaps and blanks, pathways broken and improvised.
My brain blooms in spots, suspended in compromised darkness.
I have traced these lines of life and death
Ten thousand times ten thousand
Every time I learn to dance
Every time I forget
Every time I learn to walk I fly higher I fly more lightly
I have my own radiance
See me! In the market painted, cooked like a gobhi paratha,
Floating on a veil with holes in it
Ask me anything!
The bodhisattva is in.
Does your employer provide workplace accommodations due to your MS?