Tuesday, July 31, 2012

Reasons to be Cheerful, Part I

I had a blister outbreak 2 weeks ago, and this morning my eyes feel goopey and wet. My sight seems dim and I feel frightened. I am going to the optometrist tomorrow to get drops for it and they should be able to see how it looks inside there.

My son is also going to the optometrist tomorrow to get his left eye checked by his surgeon. He was blinded in his left eye in an accident at school over a year ago, and has been recovering since. All this makes me realize how vulnerable our sight is – something I never really considered before. It turns out our seeing globes are cobbled from primitive parts. I am so thankful for modern medicine. In the old days we would have had no chance for recovery from this kind of affliction. But once my son is an adult he will be able to have his injured lens replaced. I remind him when he gets frustrated. Despite his troubles he will have options later.

That is something to be cheerful about. Another thing to be cheerful about is how incredibly well my son handles it. He got a compound bow last February (thanks Grandma for this awesome xmas gift) and learned to shoot arrows, and played in the AYSO California State Championships last April in Orange County. He did poorly in the latter (kudos to Coach Albert for playing everyone on the team in every game including Finals), but is stellar in the former. He began shooting with his right eye initially so never had to switch. I just read last week about the Olympic South Korean archer who is legally blind (blind in right eye) and holds world records.  I used to find it strange that my son is so enamored of arrows and knifes (he also learned to handle a filippine Balasong folding blad after his injury). But maybe it is not so strange after all.

Monday, July 30, 2012

The Future of Medicine, and Space Travel

I am writing a book of short stories to be shared on this blog in rough form and gathered under the title Dysautonomy. In a dysautonomic world, automatic systems needed to sustain life are compromised through limited design, malfunction, sabotage, and Acts of God. The harsh physical environment on Mars becomes a metaphor for the daily struggle to survive with limited capability. These demands cause a series of breakdowns across the spectrum of automatic systems necessary for human life, including nervous, psychologic, atmospheric, hydration, nutrition, power, and communication systems. 

By sharing these stories and related information among neuroatypicals as well as normal functioning people I hope to open a constructive dialogue regarding our collective future health.

After all, when systems break down, the entire population is affected. The cost of such breakdowns are reflected in our sky-rocketing healthcare costs as we live longer and as neurologic affliction becomes more predominant. Over time our DNA changes based on our shifting social and environmental priorities, thus simultaneously shutting down and opening up future genetic possibilities. A decrease in physical health and increasing complications with neurologic and mental health are trends recognized throughout the world today. Both genetic and environmental factors contribute to this decline. In a near-future scenario, how will the diagnosis, treatment and care of afflicted individuals be apportioned?

Today in the U.S. we have a lottery system in which those born without affliction can gain access to excellent healthcare, while often those most in need of support are relegated to long-term poverty and sub-optimal care. Is there a more humane way to allocate access to healthcare? If afflicted individuals were supported instead of penalized, will our contribution to society outweigh the cost of maintaining our health? In a future universal healthcare scenario, will afflicted individuals be required to accept corrective procedures – even when someone prefers not to exchange their atypicality for “normalcy”? New diagnostic and treatment techniques are now emerging rapidly in the fields of both Neurology and Psychology. But who has access to these technologies? Will those genetically predisposed to affliction be removed from the gene pool through early recognition and intervention, or will such afflictions be corrected through genetic manipulation?

These are the issues essential to Dysautonomy. In this series of stories, the afflicted discover their strengths in surprising ways. A Bipolar visionary launches his team to Mars, but breaks down when his mania-fueled ego is unable to switch gears to more practical concerns. An autistic tween becomes a superhero, saving his group from demise while relying on the particular and peculiar abilities associated with autism. A young rape victim finds the will to survive and to love despite her entanglement in an interspace legal case. A drug-addict who becomes an unwitting subject in a disconcerting experiment in procreation finds the will to escape both his addiction and her captors.

This is not the clean, controlled image of a Mars colony promoted by NASA. Instead we discover a world much like our own, where disruptions internal and external determine our fate. The black market exchanges among the various Mars stations eclipse any effort to establish an earth-based control. Fudged health records, bribery, drone-hacking, human-hacking, stowaways, sex slaves, cannibalism, systems sabotage, environmental devastation, and substance abuse become fixtures in this scenario. But so does human ingenuity, generosity, sacrifice, and love.

Through stories, experiences, and public discussion, Dysautonomy will travel through space, time, and DNA in order to consider the human organism and psyche from a behavioral and neurologic standpoint.

We travel, initially, to lose ourselves; and we travel, next to find ourselves.” –Pico Iyer

Saturday, July 28, 2012

The breakdown of automatic systems...

Dysautonomia is a breakdown of the autonomic nervous system. But I think of the term also in reference to the breakdown of autonomous systems generally – life systems including those related to power, water, and food are also vulnerable to breakdown.

What if we consider travel to Mars as a metaphor for neurologic dysfunction? In both scenarios simple everyday tasks become difficult, and one must be prepared for unexpected and imminent disaster. Physical movements become slow and heavy. You are subject to vertigo, nausea, disorientation, and psychologic stress. In short: your world closes down around you. The people in your immediate circle become key to your survival. You may never return to the life you knew.

The below image was taken during "a five-day odyssey in the Alps designed to mimic potential future missions on Mars" which took place in "the largest ice caves on Earth, spacesuits and remote-controlled planetary rovers were for the first time tested". In this recent experiment researchers attempted to create the conditions future explorers will encounter on Mars – the weight, immobility, and other physical factors were artificially introduced, as well as in the below scenario a breakdown in communications. I love this image because one immediately recognizes how difficult physical movement is, and how isolated one would be sensorially.– Link to story

I also love the images from this experiment because they remind me of a story from J.G. Ballard from his book "Memories of the Space Age", where a man believes he is on Mars, but is actually in a recreation of Mars on earth in a development called Jupiter Cove. He is of course out of his mind. As one would surely be on the real Mars.

Photo credit: OEWF (Katja Zanella-Kux)