Disability

Conversation With A Blind Biohacker

Diagnosed with retinitis pigmentosa, Victor Misfud refused to accept his doctor's opinion that his eyesight would never approve, embarking instead on an adventure in neuroplasticity.

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Most of us tend to think of our brains as a fixed entity, a blueprint mapping out a set neurological pathway through our lives.

But that’s not quite accurate, says Victor Misfud. The discovery that brains can change was a revelation to the Toronto citizen scientist and biohacker, who charted his quest to heal past trauma and improve his eyesight in his documentary, My Neuroplastic Adventure.

At nine, Misfud was diagnosed with retinitis pigmentosa, a degenerative eye disease that causes severe vision impairment. As he grew older and his eyesight worsened, he wrestled with his condition. Part of his struggle was accepting the inevitability of his condition’s progression.

“When I was first diagnosed the doctor told me, you have this condition and there’s nothing you can do about it.” 

We’re taught to listen to the professional in the white coat, he says. But this means relinquishing control.

“Essentially, they take your power away for healing. If [the doctor] thinks I have no power to do anything about it, I have to believe him, because he’s the authority on that.”

Neuroplasticity is a growing field exploring the brain’s ability to form new connections and pathways, and alter how its circuits are wired. For Misfud, the concept was revelatory.

“I had that fixed idea that nothing can change. And for a long time I just thought, I’ll wait until a cure comes along. But a lot of things I thought were fixed; in the sense that that’s my brain, that’s how I’m going to be for the rest of my life; were not necessarily the case,” Misfud says.

“Why is it that when we break our arm we put on a cast and the body heals that, but anything to do with eyesight and we’re led to believe we can’t fix it?” 

Misfud’s documentary charts his work with scientists and doctors as he explores everything from ancient remedies to cutting-edge technology. His journey was part self healing, and part charting a route for others following in his footsteps.

Victor Misfud, who has retinitis pigmentosa, used principles of neuroplasticity to improve his eyesight.

What was it like growing up with retinitis pigmentosa?

My condition went unnoticed for a long time. It doesn’t appear visually that I’m legally blind. I was hiding my condition, not telling people about it, ashamed of it. I didn’t feel like I was like the other kids. 

At 16 I was able to get my driver’s licence: I had my own car, I drove to my job. But at 21, I lost my licence as I was getting worse. I had to sell my car. Losing that independence felt like I was taking a step backwards. I had to be driven around by my sisters or taking the bus, which kind of sucks.

I went through severe depression and anxiety. I went down this path of abuse of alcohol, and other ways we mask our symptoms. I was put on anti depressants and anti-anxiety medications and that didn’t really do much.

What kick-started your neuroplastic journey?

I came across a book, The Brain That Changes Itself, by Dr Norman Doidge, about 10 years ago. It’s about how neuroplasticity has changed peoples lives for the better. One story describes this woman Barbara Arrowsmith Young, who started a school for people with learning disabilities to reprogram the brain with these cognitive exercises.

When I was young I didn’t do well at school at all. I thought I was stupid, and didn’t understand things. Reading her story in this book opened my eyes, and I realized I had undiagnosed learning disabilities. I thought I could possibly change my brain so I could feel that I was a functioning member of society.

A big part of learning disabilities are how we interact with people. I was in a relationship at the time and I felt very misunderstood. After that relationship ended I went on a quest to see what I could do to reclaim my life and heal on many different levels.

I ended up going to [Arrowsmith Young’s] school full time for three years as an adult of 32. And I thought, if I thought that if I could do that with my brain, I could probably do that with my eyesight too. 

Your healing journey ran the gamut from traditional medicine to cutting-edge technology. Did anything work?

[In the documentary] we talked to David Webber, who was in Dr Doidge’s second book, The Brain’s Way of Healing. He was a visually impaired man who had retrained his brain to see. 

He gave me some vision exercises that I do. And I made some quite a bit of improvement in my vision condition; I fixed my visual acuity by 33%. 

I haven’t entirely corrected [my vision], but I’m still exploring new modalities and new things like stem cells and peptides which are having some very interesting capabilities to reverse my so-called irreversible condition.

Can you describe the eye exercises?

There’s some that involve patching one eye, and doing exercises with a ball. Another is called palming, where you put the palms of your hands over your eyes and let them rest. Often we don’t realise how much we’re straining our eyes until we hold them. When we hold them it eases the tension.

Then there’s ones that are simply moving your eyes, looking up for ten seconds, down for ten seconds, right, looking on a left angle; giving it this full scope, stretching your eyes. 

There’s a lot of information now that the eyes need to be exercised as well; they need the right light environment and stimulation and they’ll regenerate. 

As well as exercises, what else can help?

I think changing your prescription is a big thing. Certain prescription glasses act like a crutch, freezing the eyes from actually moving. But if you’re given the right prescription, the eyes can move and with training they can improve their visual acuity.

A lot of people with astigmatisms have astigmatism compensation on their glasses, which ends up keeping your eyes fixed on a central point. So I worked with a holistic optometrist, they slowly changed the prescription, and you realize you don’t need that strong a prescription. 

Certain prescription glasses act like a crutch, freezing the eyes from actually moving. But if you’re given the right prescription, the eyes can move and with training they can improve their visual acuity.

I’m also a big proponent of light. You need lightbulbs to mimic full spectrum light. Often, energy saver lights take out the heat element; the red and infrared part of the spectrum. But that changes the spectrum of the bulb, creating a high light blue spectrum which is very unnatural on the eyes. 

You have talked about the conflict between high tech advances and the natural world, how does that relate to eyesight?

For thousands of years the first light we saw was sunrise, and then the different color temperatures through the cycle of the day. Throughout history, after the sun went down there was no blue light, the only light source we had was a candle which is red, and infrared. 

Looking at your phone past sundown, and you’re looking at this blue spectrum. That accelerates damage in eyesight. Never before have we had these bright, unbalanced spectrums. 

Right now, technology is really throwing off our balance in life. It throws off circadian biology: people seem to be having sleep issues left right and centre, What has changed?

Victor Misfud’s documentary, My Neuroplastic Adventure, documents his quest to improve his vision.

How did the documentary get started?

I conceptualized the documentary about three years ago. I had done some TV with Canada National TV Inc. I pitched the idea to them, saying I’d worked with the people and done all these things for my healing journey, I want to tell the story of my life and how I got out of this hole I was in.

The film is to share with other people, like a road map, and show people in a similar situation that they have the power to change themselves from their inner world and their outer worlds, on different levels.

I hooked up with a production company and wrote a script, and we shot it over a five-month period. 

What was the most personally challenging thing you did on your journey?

Nothing was easy. But to change yourself you have to go through this darkness to get to the light.

The Arrowsmith School was really, really challenging. Because you’re doing things that your brain isn’t used to. You can feel there’s a struggle to get these aspects of the brain online. They do a cognitive assessment beforehand to find out what parts of the brain aren’t working to par, then they customize the exercises to target those areas. It was very hard, and very emotional as well. 

Nothing was easy. But to change yourself you have to go through this darkness to get to the light.

I also explored the depths of my consciousness, and the trauma I experienced as a kid. All of these things were scary.

What was it like having access to the cutting edge scientists and doctors you worked with? 

It was pretty cool. I felt honored. There are such inspirational people doing this work; if it wasn’t for them I wouldn’t be where I am.

You read about these people in books, these New York Times best-selling authors … how did I get access? It goes to show that if you ask you will receive. 

Where will your journey take you next?

There are other areas I’d like to explore. I’m in contact with the head of International Peptide Society, getting his guidance to work with peptides. They’re the future of medicine now, and there’s buzz about their potential to heal and regenerate.

[The documentary] created more windows and doors for me and I’m hoping more will come of it. I use it as a calling card. People with my condition have been in touch, and I’d like to reach out to more and see how I can help them.

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