Wesley Britton's Blog - Posts Tagged "retinitis-pigmentosa"

To begin introducing myself as an author, I thought I’d talk a bit about my blindness. After all, that was one characteristic I gave my main protagonist, Dr. Malcolm Renbourn. My own blindness resulted from a genetic disease called retinitis pigmentosa, Malcolm’s came from being ripped across the barrier between the multi-verses. Hence, that’s why so much about genetics in the Beta-Earth Chronicles.

I admit being very surprised by something I’ve noticed in all the reviews posted at Amazon and Goodreads. Some astute folks have pointed out the depth of the books comes from all the social and cultural issues addressed in one way or another—race, class, religion, sex, politics. But little is said about disability. I sense a reluctance out there facing disabilities which I can’t explain.

Which leads to the question—how much of author Wesley Britton is in the character of Malcolm Renbourn? In a way, I’m not sure I’m the best person to ask. I’m certain there’s much about him that must reflect who I am. For me, I know there are incidents and experiences from my own life I used in the first three chapters of The Blind Alien. However, from the moment Malcolm escapes across the border into Rhasvi, I’ve always felt he had become his own man, always surprising me thereafter. Perhaps you’ve heard TV actors talk about how they started playing a role before a switch goes off inside them and the actor steps into their character, becomes that character, and goes deeper than reading lines and hitting the marks. Well, that moment happened for Malcolm, in my mind, when Bar sends him north into freedom.

What has this to do with disability? Well, when blindness becomes a central attribute of your being, especially when you’re on a strange planet and absolutely nothing is familiar, what doesn’t blindness impact? I think of one scene where Malcolm meets the blind prophetess, Lorei Caul. While Malcolm became sightless at the age of 35, she was blind from birth. These are very different experiences resulting in very different responses from people. One person has memories of what they once saw, what they lost; the other has no such memories—being blind was all they ever knew. So the individual who became blind later in life has the added confusion of trying to mix and match what they feel and hear with things they remember. From personal experience, I can say those of us who went blind later in life have to go through a process of grief and loss. I drew on this truth quite a bit in The Blind Alien.

For another observation, in book two I had a priestess reveal Malcolm’s eyes perceive blackness. Lorei’s eyes perceive nothing at all. There’s a difference. Malcolm has the awareness of darkness, of something impenetrable filling his visual screens. Lorei has no such awareness and senses nothing missing. Here’s something to ponder—the difference between blackness and nothingness.

What has blindness meant to me, a man who started losing his sight in his mid-twenties? A complex question with a complex answer. Let me try this. Some twenty years or so ago, when being a poet of some small renown was my creative identity, I had a friend who was a Lakota-Sioux Shaman. He looked at me one day and commanded, “Write me a poem about the joys of blindness.” Talk about a writing prompt!

The result was “The Veil.” Reading it again so many years later, I can think of many revisions and changes I could and probably should make. But I think it more honest to present it just as it appeared in Talus & Scree, one of my favorite print magazines of the small-press era.

THE VEIL

When the blindness came, so did the veil
& few look in & those that do
I cannot tell for certain

what I am perceiving. Not light, not dark,
not the common colors shared by most.
I see no body language so speak it poorly.
I see neither smile nor frown so ignore both.
Cannot tell friend from stranger, so the veil
swells like a smoke or fog
around me in protection, confusion,
aloneness while
interdependency grows just as thick and wide
regulated by the whims and schedules of others
living around the cracks of others' good will,
hearing more intentions and promises than fulfillment
or commitment or truth
and grasp the limitations after
the embers of rage finally subside

and accept the moment, what is,
what can be patiently done,

ah, patience against my worse nature,
finally accepting calm Now after the
Disappointment Series and feel the
Ying of happy quiet aloneness without
the being with anyone not just to be alone
the Yang of the female other who
may be illusion, fantasy, nightmare
while I casually, cautiously, distantly
touch others veiled not to be hurt
veiled to expect assault
veiled to be comfortable within
and always aware of the separateness
that lives against my belief in
interconnections
expecting more than is offered
expecting more than can be given

so I create little footnotes in books
and minds and groups and drums and
the image of the invisible man walking
thru the town that did not see him before
and is not looking for him now
as I await the next step
whether shin-cracking or
softer, whether pain or the touch
of my dogs & toys

so I have not answered your question. You wonder what are
The joys of blindness?

Well, the joy of music, but I had that before.
The joy of touch, but that has a powerful yang.
The joy of surprising connections, the nuggets
amongst the dross,
and the surprise of occasionally remembering a color,
a face, place, a possible poem
but mostly I find the happiness in thinking of Buddha,
of little accomplishments, small adventures, never minding
the great promise of youth
and knowing how much I've improved--hell,
I've had so far to go--and how different
I do things now so I must call the happiness
acceptance, letting go of illusions
becoming aware of illusions
de-emphasizing illusions
putting illusions into perspective
knowing my past is my own illusion
shared delusionally with others
whose place in the Now is never certain
and uncertainty has its place, especially in

a cocky man
who came to belief and conviction very slowly,
from the Bible to the nothing to the nothing with
meaning
who expects all to be transitory
as is All
and to cease craving, the source
of suffering, and emphasize service and
gifts, even gifts not wanted or expected,
and see what seeds grow.

----
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Beta-Earth website:
https://drwesleybritton.com/

Blind Gambit: A GameLit novel
Jon Cronshaw
Print Length: 275 pages
Publisher: No World Press (May 5, 2018)
Publication Date: May 5, 2018
Sold by: Amazon Digital Services LLC
ASIN: B079QL5CCL

https://www.amazon.com/Blind-Gambit-G...

Reviewed by Dr. Wesley Britton

On one hand, Jon Cronshaw is a younger author than I am and he's far more familiar with the world of gaming than I will ever be. So if you too are into video games and "game lit," than you're a prime target reader for Blind Gambit.

From a different perspective, I too carry the retinitis pigmentosa gene that results in blindness just like the main character of Brian in Cronshaw's novel. So does the author himself. While I was older and no longer living at home when the onset kicked in for me, from the very beginning of the story, I recognized many events in Brian's personal life as well as many of his reactions to what is happening to him as his sight erodes in the physical world. I remember so many events and conversations in my life that mirrors what Brian goes through as he tries to maintain independence, downplay his disability as much as he can, and find the ways to interact with friends and family as his personal identity changes during the process of going blind. As he admits in his afterword, much of the book can be called a fictionalized memoir.

In fact, we have two themes traveling on parallel lines through the book. One is in virtual reality where Brian can see what's going on in the game of Gambit because he has a chip that allows his avatar, Neuro, to watch what his three teammates, FragQueen, Harley, and Socko are doing on the battlefields against zombies while he proves to be the worst sniper in game world. At the same time, a hacker is going through Gambit destroying every team and game he, she, or it can for unknown reasons. Brian, however, is immune to the hacker's weapons due to that chip. So, on the outside, he's being trained in independent living and how to have a relationship with a girl. A real one. In VR, he is trained in how to combat the hacker by learning strategy, create unique weapons out of ordinary items, and learn how to uncover the hacker's true identity.

I admit, for a long time I wondered why I should care about the destruction of virtual avatars. Not exactly the sort of carnage living beings should worry about. So are there any consequences of the hacker's killing spree in the real world beyond headaches players suffer after leaving the game? At the same time, when Brian isn't hooked up to VR, his often over protective mother talks him into working with blind support groups so he can learn how to live with his disability. Stubborn and resisting most such efforts, Brian isn't a quick study in any of his quests. In the real world, he ends up being bruised and wounded as he tries out a number of activities other blind folks can do. Along the way,

Without question, the primary readership for Blind Gambit will be YA readers who are into gaming. But I really hope a wider audience will include those who might gain some sensitivity and insight not just regarding the disability of blindness, but some understanding of the emotional turmoils the disabled go through as, in this case, we lose the sense of sight.

As with pretty much every e-book published these days, readers can find out more about Jon Cronshaw's worlds by reading his afterword and signing up for his newsletter. The adventures don't have to end when you finish Blind Gambit.


This review first appeared at BookPleasures.com on July 1, 2019:
https://waa.ai/XAAH