Eric Valor is the author of, among other writings, the poetry collection Hamachi Eyes (2018). However, his path to creative writing has been unconventional. In his mid-20s, Valor was lucky enough to be in Silicon Valley during the beginning of the “Dot-Com” era. Reading the coming boom correctly, he taught himself how to manage corporate computers and networks, and with hard work and determination this new hobby became a career. By the middle of 2004, Eric had attained a dream career, moving literally from slums to seashore, living with his wife in a house by the beach where they could walk to surf together for their anniversary. Then came a diagnosis of ALS, Lou Gehrig’s Disease.
Despite the challenges presented by ALS, Eric transitioned into a new career. As an amateur neurologist, he continues to research and write about the disease, and sits on committees pertaining to medical research and patient advocacy. He maintains a blog and a accompanying podcast, where he analyzes research as a service to other PALS: Persons with ALS. And, he maintains a website, featuring his writings (critical and creative), original recipes, press kit, presentations, and much more, ericvalor.org. He can also be found on Twitter, Facebook and Quora.
Our contributing editor Paul Rowe connected with Valor by email to learn a bit about his writing and advocacy.
I lie in bed / No connection to my head from "Locked-In Blues" |
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boy wouldn’t that dog be surprised if the fire hydrant pissed back from "On a Lunchtime Walk" |
There is no Heaven / No Valhalla from "Life" |
Paul Rowe: Thank you, Eric, for agreeing to this interview with me and to allow us to reprint these selected poems [at right] from your debut collection Hamachi Eyes. I’d like to begin by sharing with our readers a bit about your life, your experiences writing poetry, and how your poetry has evolved over the years.
Eric Valor: Thanks for the opportunity to share with your readers, Paul. I am happy to answer any questions you have.
PR: The poems in your collection are written during various stages in your life. While the collection is undoubtedly unified, there are several voices here. Tell us a bit about your experimentation with voice, poetic speakers, or personae.
EV: I am glad you spotted that. Being a single voice, being monochromatic, is boring. I never really set out to write any particular piece in a different voice or style. I just write whatever comes out of the factory deep in my mind. The pieces develop as they come out and then I go back and adjust words and syntax for different meanings and context to better fit the piece. I always wanted to express myself in different ways so I guess that’s why different pieces come out in different voices and styles. I just never quite know which is going to appear until a few lines in.
My writing evolved as my vocabulary grew slightly. It was always fairly large as my dad taught me to read and write at an early age and my parents stressed good communication skills as necessary for success. My writing skills were always pretty good which helped me in school reports. My ability to process information and produce new insights from multiple sources has always been at a high level—I taught myself computer science which was my career and did the same with Neurology after my diagnosis with ALS, moving into research for a cure—and I think that really helps me in my creative writing.
My writing also evolved as I did over the last few years. You might notice a gap of years in my writing when I was focused on my career and marriage. I was working on my business communication as I grew in my career. When I got to Mercedes-Benz Research & Development, North America, my career was skyrocketing but I was diagnosed almost immediately after starting. I told only my CEO and junior admin and they kept my secret for two years before I was forced to make a company-wide announcement of it during an all-hands meeting. I really wonder where I would be now without the diagnosis. For sure I would still be married and in a corner office, and I wouldn’t have written my last few pieces.
PR: What literature inspires you the most? Who are some writers who have impacted you or inspired you over the years?
EV: I was inspired at a young age by, of all people, Stephen King. He used unusual font size and style for emphasis in his books and I incorporated that into my own writing. I was also influenced by Arthur C. Clarke, Isaac Asimov, e.e. cummings, Emily Dickinson, A.A. Milne, and Walt Whitman. (Some might say also Sylvia Plath, but I have never read her, on purpose).
My business and scientific writing bears the influence of by my high school English teacher, Ms. Dawn Chase. She was difficult but I am glad for the experience. I also took typing classes just to sit next to a beautiful girl. We had these horrible, carpal-tunnel-inducing 1950s manual Underwood machines, but that taught me various business formatting which turned out to be invaluable in my early career.
PR: The recent passing of Stephen Hawking has raised awareness of both ALS (amyotrophic lateral sclerosis)/MND (motor neuron disease) and the incredibly productive and creative lives people with ALS can live with the help of advancements in care and technology. How does technology assist and enable you to write? How has your writing evolved in form and content as you continue to adapt to the challenges of this disease?
EV: I think the movie about Professor Hawking’s life, The Theory of Everything, really helped. So did You’re Not You—although the ending was entirely false! Person(s) with ALS or PALS just quietly go to sleep. I also think that the advances in communication technology have allowed PALS to become their own advocates because the ALS Association isn’t doing a damned thing. My ability to communicate has been key in that because I am one of the few “old timers” and I am quite active on social media encouraging PALS to live and helping them with their communication needs. I am also vocal in media which you can see on my website.
Insofar as my technology, I wouldn’t be here without it. I knew about this then-new technology when I was diagnosed which is why I chose to go on a vent and live. If this eyegaze technology didn’t exist, I would have taken the morphine train to Dirtnap Town around early 2008. Professor Hawking’s technology was primitive, working with a mechanical switch and an X-Y scanner which first went from top-to-bottom then left-to-right to choose an X-Y coordinate on the screen. My technology uses an infrared camera to track my pupil directly around the screen. With it I can type words directly into applications like Firefox, Microsoft Word, etc. That’s how I am replying to your answers in this interview right now. Without this technology, I would be mute and unable to communicate. That’s called Locked-In Syndrome, and is a fate worse than death. LIS was the basis for the song I wrote called “Locked-In Blues,” and is a theme I touch on in “Hamachi Eyes.” “Locked-In Blues” is the opening and closing of all my podcasts.
One very fortunate aspect of my disease is that it forces me to slow down and organize my thoughts before writing (it may not seem so now but I am trying to convey a lot of information quickly in few words). This is true for both my technical and creative writing. It’s especially important when writing correspondence to PhDs and MDs. I am thankful for that but I do wish the cost wasn’t so dear.
PR: Recently, writer Gabriella Bellot noted that Stephen Hawking “was a poet, translating the scatter and flit, the endless summer and autumn, of the cosmos into language.” Although Hawking’s contributions are not commonly thought of in such ways, his vision of an unbounded universe, that might even create other universes from itself, is profoundly poetic. As a poet living with ALS who is versed in computer science, neuroscience, technology, and transhumanism, how does your knowledge of the sciences inspire your art, and vice versa?
EV: It’s pretty much vice versa. My science knowledge doesn’t inform my art except for perhaps some vocabulary and organization. My art most definitely informs my scientific writing in that I am trained by it to express myself in few words of meaning. I find that means that my writing is thus more effective. For that I am thankful.
I agree that Professor Hawking was quite eloquent in his writing and I wanted to model that in my own technical writing. I am told that I accomplished that in my computer system training seminars during my Information Technology career and in my blog posts trying to explain complex biological information to other PALS who don’t have scientific training. For many months I have switched to animated podcasts in addition to text blogs. These have been successful and I have done a couple for a scientific review group I am part of called ALSUntangled. Check my YouTube channel for those—the second one for ALSUntangled is still in progress.
PR: Thanks in large part to the Ice Bucket Challenge (and now the #ALSPepperChallenge to raise funds for the ALS Therapy Development Institute), since 2014 there has been an increased public awareness of ALS. Are there treatment prospects on the horizon. Tell us a bit about ALS, your advocacy work for the disease, and what prospects we should know about.
EV: ALS is Amyotrophic Lateral Sclerosis. It’s a Latin phrase meaning “non-feeding of the muscles (a-myo-trophic) which creates scarring (sclerosis) in the spinal column on both outer sides (lateral)”. It’s a progressive “dying back” of the motor neurons from their connections to the muscles (the neuromuscular junctions, NMJs) back up to the cell bodies and then the bodies themselves. There are many theories about why this happens, from mitochondrial failure to dynein inability to transport cargo back up the axons to the cell body (like old broken mitochondria back up the cytoskeleton to the cell body where it’s broken down and recycled into components for future cellular organelles), to depletion of nuclear proteins into the cytoplasm which are required in the nucleus for cell function. There are more but those were a few examples. The effect is a growing weakness usually noticed first in the distal limbs like ankles or wrists followed by a slimming of the muscles. This is progressive up the limbs to the trunk and spreads across to the other limbs, always starting distally (farthest from the spine). Once in the trunk it spreads throughout, eventually getting to the upper neck and the Phrenic Nerve which controls the diaphragm which is the set of responsible for breathing. I call that set of muscles the Money Muscle, because when that fails down to around 20% predicted capacity, the PALS is in mortal danger of imminent death from respiratory failure.
My advocacy policy is to be a “media whore”. I don’t pass up any opportunity to appear in the mass media of any kind. I have convinced other PALS (and CALS, Caregivers of PALS) to do likewise. I am also active on social media spreading news and my blog posts, etc. Being “political” is too common but I keep my issues largely to decisions which negatively impact us. I was part of a small group who found out about an obscure Medicare rule that was going to eliminate all reimbursement for Speech Generating Devices unless they were stripped of all network ability and were restricted to only audible speech. It had been proposed for a year and all ALSA did was write a tepid email in protest without even notifying PALS. We raised holy hell on social media to alert PALS. Team Gleason, of which I am a board member, pushed for and got a bill before Congress called the Steve Gleason Act which passed and was signed into law by Present Obama. This year it was re-signed and made permanent, making it a law that Medicare reimburse the costs of SGDs 80% regardless of network capability. That would never have happened had PALS not heard in the nick of time and taken the matter into our own hands.
There are two promising treatment options I am personally excited about. The first is NP001 by Neuraltus Pharmaceuticals. It’s an ultra-pure formulation of sodium chlorite (NaClO2-), and acts on the macrophages (white blood cells) and microglia (the white blood cells in the central nervous system), reverting them from active attack state (M1) to nurturing support state (M2). I have done my own research including developing relationships with the doctor who invented it and two of the company’s CEOs (their former first is a co-founder with me of my own research organization called SciOpen Research Group). Based on previous trials and preliminary data from the current, things look very good for approval.
The second is Nurown by Brainstorm. This treatment hits essentially the same pathway, called neuroinflammation, but in a very different way. It uses mesenchymal stromal cells (MSCs) extracted from the bone marrow or fat and selectively bred into larger numbers using only those which, while reducing inflammation (which is what they normally do), also produce molecules which help neurons grow and repair themselves. It also has data which are frankly unprecedented. I also know a few people in the company including the CEO and an independent evaluation by my organization Hope Now For ALS (advocating for modern changes to the clinical trial process) showed remarkable results.
There are a few more which have promise but are still too preliminary to mention in detail. Nevertheless, I believe 2018 and 2019 will be landmark years in the history of research for an effective treatment for ALS.
PR: ALS has been acknowledged by medical professionals for over 150 years and the diagnosis is still dire. How can our readers take action to support people living with ALS and help advance potential treatments?
EV: The short answer? Money. Stanley Appel, a well-known ALS researcher and clinician, had a statement before Congress, “ALS isn’t an incurable disease, it’s an under-funded one.” Nothing could be more true. The amount of NIH funding for this rash of arson cases is pitiful and woefully inadequate to the task. For 2017 it was $55 million while for Alzheimer’s it was $1.3 billion. That’s ridiculous. So we need much more money, and the only way to get it is for people to pressure their Congresscritters to allocate it and demand the NIH spend it.
I implore people not to simply write a check to the ALS Association because I am not seeing the Ice Bucket Challenge money being used in a cohesive and effective way. On the other hand, the Ghost Pepper Challenge in support of ALS-TDI is great, it’s just not big enough to adequately support that fine organization. I have been a friend and supporter of TDI since 2007. They have the same engineering approach to research that I have.
Insofar as treatments in final stages of trials, there’s not much people can do. They cost tens of millions of dollars. But what people can do is two-fold: First, if you have ALS, look on my website for the “Clinical Trials” tab and go search for trials in your area, then enroll in one; second, support ALS-TDI in their translational research, meaning taking promising discoveries from the bench through animals for pharmacokinetics, dynamics, and toxicity studies to human trials. The “translational research” area is called “The Valley of Death” because nobody wants to invest in it. The ROI isn’t seen as being there by Big Pharma. So TDI took on the job of “de-risking” new drug development. I have my own company doing much the same thing but even cheaper, although not with the complete science TDI can do.
PR: I want to make sure we circle back to your writing before we end. What advice do you have for other writers living with disability?
EV: Don't make your condition the focus of your writing. You aren't dead (yet) and there's nothing more boring to readers than someone incessantly whining about their “bad break”, the stroke of misfortune. Keep in mind that there are millions of people in the world facing much worse than you every day. Stick to your art, your subject matter, because you know that best already and switching horses mid-stream is more than likely to get you drowned. I wrote exactly one piece about ALS after diagnosis: “My Strings Sing for Renaissance.” It's the last of that type until I write my own eulogy and plan my own wake where my ashes will be dumped overboard at my favorite local surf spot, 4-Mile, approximately 4 miles north of Santa Cruz.
So just stick to your style and subject. Save often and frequently to preserve ideas. And always snap a daily image of your disk for disaster recovery like a house fire. My caregivers are under orders to take my external HDD, put it in the box with the backup/restore software and instructions, put that on my stomach in bed, and only then evacuate me and the recovery kit from the burning house. I don't trust “The Cloud” with mission-critical data. I use Norton Ghost which is no longer available, but there are plenty of such software still available on the market.
PR: To wrap things up, tell us about the title of your collection. What does Hamachi Eyes mean?
EV: Ha! It's an inside joke between my former wife and myself. It's the look I got in my eyes when I was eating hamachi nigiri—yellow tail tuna sushi on the pads of rice—and when I looked at her. She started calling the look “hamachi eyes” so I named the collection that and dedicated it to her. It's also the title of the first piece in the collection which I wrote for her on a scrap of paper. I showed her my writing one day to show where I learned to write as I do and she joked that I never did a piece for her… so I did.
Banner graphic: A scan (cropped) of Plate 20, showing Sagittarius. Used here under the terms the Creative Commons Attribution-Share Alike 4.0 International license. From A celestial atlas: comprising a systematic display of the heavens in a series of thirty maps: illustrated by scientific description of their contents and accompanied by catalogues of the stars and astronomical exercises, by Alexander Jamieson, published in London by G. & W.B. Whittaker, 1822. Sourced from the United States Naval Observatory Library; in the public domain.
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