Friday, March 11, 2016

My friend the dreamer


I'm posting to raise awareness of a different type of social justice we need more of, one for those with disabilities. I've had some first-hand experience with the issues and complications of care work and it was often easy to see all the things that could be improved systemically, as well as the massive undertaking that would require to figure out and accomplish. The system in place now works pretty well in that people get taken care of, but it's badly in need of both more professionals and more culture. It was profound to see the people who have dedicated their lives to people who they consider friends. It was a privilege to learn about compassion and professionalism from them, and they'd all agree that we all only want the best for afflicted individuals, and that they could make great use of more guidance and resources.

This is a little bit about the life of a friend with Friedrich's Ataxia who receives this type of care. 
  
A very close friend of mine is so good at lucid dreaming he can sometimes live a thousand lives each morning in that period between being completely asleep or awake. He's described to me the deepest horrors to the highest fantasies, super powers and a literal fight against the darkness in his own mind. To him, he describes the waking world as another fleeting dream in a tailspin of conscious occurrences of himself.

Why? He is so severely disabled he has nearly no agency when awake, though he's fully self aware. Not to mention being on a vast changing cocktail of medicines to prevent the slew of excruciating defects his genetics provided that will eventually kill him, if only due to the sheer stress of living with his condition. On top of that, he's rarely intellectually engaged by others, only left to ruminate and entertain himself with what little he has or knows. This constantly reminds him of his condition while his growth as a human being goes cynically unnoticed and unaided. Combine a spiral of suffering and utter banality in his waking life with enough neurological and sleeping medicines and his mind is on fire at night. The horrors he faces in his dreams stem from waking up into a sedative coma during back surgery for getting rods installed. He fights off these horrors, sometimes in vast displays, destroying cities of nightmares and planets of demons to find better adventures.

He's conceded to the humor in everything in our world, the most Mark Twain-esque mo-fo you've ever met. Yet he's alive, he has dreams, and he does enjoy good company - especially his awesome family. His waking life doesn't need to be so banal, and it's a result of our infrastructure lacking in knowledgeable and observant human support networks. Rather, he's often dehumanized in a by-the-books manner or just by what he calls "sympathy smiles" in public. This causes a great lacking in real and constructive human presence and all the problems that can come with that alienation. However, he's given himself a new life to look forward to through mastery of his sleep.

The following is a story from his dreams:
He awoke in front of a ladder. He stood up out of his wheel chair and decided to climb it. He climbed higher and higher, fascinated at his view of the world around him until he rose into the clouds. Then, he rose to the top of the clouds and found a vast sea of naked and beautiful angels. These angels began clawing and violently wounding each other while making love. He let go and fell back down to the earth in shock, into another dream. That's just the average.

He says there are times where he is constantly destroying and reshaping his dreams, trying to find one that won't be full of horrors. Other times he is a super saiyan who spends 1000 years conquering the universe, taking turns with each character in the saga. Other times he dreams of being awake in his room for hours with a crushing weight on his chest, preventing him from calling for help. He's had to learn to shut these dreams down in many different ways to stay ahead of the nightmares.

All of the individuals I got to know who were all around my age and had the worst kinds of diseases were also very intelligent and experienced people with a lot to offer given a good platform. Isaac Musser, who passed away in fall of 2015 of Duchenne Muscular Dystrophy at 28, would teach me all about natural gardening and how to grow the best possible crops and keep the soil healthy. He managed to stay off pain medications and even improve his health to some degree by researching his own diet.

The link below is to a piece by his older brother with the same disease about his own life. He is a writer and has an unpublished book of the same title, but is struggling with failing health - including progressive blindness and deafness - to do the final edits and find a publisher. Would someone want to help? It would mean the world.

Follow this link:
http://www.smithmag.net/mylifesofar/story.php?did=263744

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