When I was six years old I couldn’t see the chalk board.
Actually, I could see it just fine. The kid who sat behind me couldn’t and he had these awesome things on his face that I wanted: glasses. I thought they were the coolest things in the world. How would I get such an awesome accessory? He said he told his mother that he couldn’t read the chalk board…
Sitting in the doctor’s office staring at an eye chart, I breezed through the lines. The optometrist wanted to take a peek at the back of my eye. I decided to blink like crazy hoping that blinking messed him up, he’d make a mistake and prescribe me some cool specs. Yes, at six years old, I was attempting to circumvent the medical profession. (Fight the power little man!) So the doc flashed a bright light into my eye to look at my retina. The eye is pretty awesome because it’s the only part of the nervous system which can be viewed without surgery.
"Hmmmm," said the doctor.
My rapid blinking was working! I was fooling him. Awesome, thick-rimmed, coke-bottle glasses would be mine! He recommended that I see a specialist. I jumped out of the seat and hugged my Mom. I didn’t know what a specialist was, but I just assumed they were the people who made the glasses.
Over the next several years, I saw two eye doctors at the UIC Eye and Ear Infirmary on a semi-annual basis. It wasn’t a big deal since it was two days a year I didn’t have to go to school. They drew blood one time for genetic testing. Perfectly normal. They had a guy take photographs of my eyes after dilating them. Painful, but okay.
Didn’t everyone see a few world renowned scientists twice a year?
In eighth grade, I didn’t like glasses anymore and I wanted contact lenses. At Service Optical on 47th and Kedzie, I sat in the chair, ran down the eye chart and I couldn’t read a certain line.
The doctor was fidgeting with the phoropter; a device where you look through lenses and the doctor flips through different powers etc… So he was having me look through this thing, which had my correct prescription, but –“Dude I can’t read that line,” I said. He questioned the prescription I handed him and claimed that I was wasting his time. Seriously, I couldn’t read that line!
He canceled the exam, stormed out and grabbed my mother. "Ma’am, your son is too immature for contact lenses," he snorted. I could have told him that before the exam, but what does not reading a certain line have to do with it? "He has cone-rod dystrophy, you jack ass," retorted my mom. (Hell yeah, Mom, you tell him!) Wait, what?
The doc’s face said it all unfortunately.
What the hell is cone rod dystrophy? This was around 1993 – no Google. I think I may have had Encarta on my Packard Bell, but I didn’t bother to look it up.
I was informed that cone-rod dystrophy is a degenerative retinal disease and it is why years later, I couldn’t see the chalkboard unless I sat fairly close, why I couldn’t read the 20/20 line the doctor was trying to have me read and it is why I now have a hard time seeing at night or perceiving color.
"Can I still get the contact lenses?"
I did, and still wear them. I hate wearing glasses. My lenses are so thick that someone once asked if I could see the future with them. Sadly, I cannot. My eye glass prescription is about -10 in my right eye and -11 in my left eye. I’m so nearsighted that the corrective lenses almost make me farsighted.
Explaining how I see the world is pretty difficult. My visual acuity is relatively good. With contact lenses on I can read the 20/30 line on a good day. The area controlled by the macula is pretty much intact. It’s the rest of visual field that’s a mess of pigmented, charcoal-like sludge. A doctor once described it as the ashen remains of a battle my retina fought, is losing, and will eventually lose.
It’s not like the rest of my visual field is black – it’s a void which my brain fills in with what it thinks is there. It’s like MPEG2 encoding where the computer is able to make video sizes smaller because each progressive frame uses data from the previous frame and only new data is used. Or something like that.
I don’t know when I’ll go blind; I just know that I will. That doesn’t necessarily mean what you’re probably thinking, that the world will go completely dark on me and I won’t have any perception of light at all. That probably won’t happen. What will happen is that I’ll have extreme tunnel vision where it’s like you’re looking through a very tiny straw. In some cases, while rare even for this disease, center vision is lost as well and that’s closer to what you might think of as “blind.”
The day will come when I have to hand over my car keys, learn braille, and rely on a cane to navigate the world. That day came for my brother just a few short years ago and he’s only three years older than I am. His vision went on him, and went on him fast. It’s possible that my vision will stabilize and it’ll be a much slower process, but who the hell knows? Well, I don’t want to sit around and wait for it — Carpe diem, right Mr. Keating?
If there’s something you want to do, or be? Go do it.
I’m a screenwriter.
I’ve placed in some contests (Top 100 Project Greenlight 3, Quarter Finals in Blue Cat). I’ve been optioned, so I’ve had some success with it. “4 of a Kind” is a screenplay I started back in December 2003 and it was the first screenplay where I felt like I had a story to tell and I wasn’t just writing cool scenes. This is called “episodic” and I’m sure every new screenwriter has heard their script was too “episodic” at some point. It just means there’s no point to most of the scenes: aka, “it sucks”.
“4 of a Kind” made it into the Top 100 screenplays in Project Greenlight season three. It didn’t go any further. You ever watch American Idol and on the second to last show before the live performances they put like a group of people into three different rooms and then they choose two of those rooms to go on? Yeah, I know how it feels to be in the room they don’t pick.
The screenplay made its way into the hands of a few producers, but never went much further. I’ve received plenty of notes over the years, many of which were contradictory – which I’m assuming is a common problem. Earlier this year, one of the producers who has championed it came to me with an idea.
“Let’s shoot a short based off it, like an extended trailer,” he said.
Seemed like a cool idea. I took the 109 page script and rewrote it to 20 pages. Something happened when I did that. Over the years, with each new set of notes, the script started to get away from me a bit. I started adding things, removing others, and it started to resemble something other people wanted to see and not what I wanted to make when I first wrote it back in 2003. Forcing myself to strip away everything and get it down to 20 pages, I thought to myself “I think I like these 20 pages better than the 109 I had”.
My producer agreed and we said, “screw the short,” let’s shoot the feature. Let’s get this script as tight as we can, get rid of all the bad notes over the years and go back to where it was originally. So I did that, and received a CONSIDER from ScriptShark. That might not mean anything to non-screenwriters or pros in the industry who pay no attention to such services, but that meant a lot to me. It let me know I was on the right track.
Now, that leads me to the actual part of trying to shoot “4 of a Kind”. We decided to go with Kickstarter. We set a pretty high goal of $100,000. If we reach that, we’ll definitely try and raise even more through private investment. Hopefully we haven’t bit off more than we can chew and the funding goal isn’t too lofty, and more importantly, my lack of vision lets me complete this goal of mine. Like they say, “Just because you can’t see doesn’t mean you don’t have vision.” Does anyone say that? Well, I just did. So what I’m saying is this: I’m hopeful at this point of the prospects of the campaign and of my abilities as a film maker.
Hope, as the Wachowski Bros. penned it in The Matrix Reloaded, “…is the quintessential human delusion, simultaneously the source of your greatest strength.”
I’m hopeful that my eye sight has stabilized and the worst is potentially over.
I’m hopeful that as a first time director, I don’t take a story I’ve worked on for almost a decade and completely f*ck it up.
I’m hopeful when I hear of people like Dr. Henry Klassen at UC Berkley and the amazing work he’s doing with stem cell technology. I’m more hopeful when I hear of bionic eye implants and gene therapy or man-made viruses engineered to deliver medicine to malfunctioning photo receptors.
Seriously, I’m hopeful because well, sometimes hope is all you have.
So this campaign of mine is on behalf of my brother, the millions of others suffering from retinal disease, all those would be dreamers and to my quintessential human delusion.
Jack Marchetti was born and raised on the southwest side of Chicago. A software developer by trade, he was diagnosed at an early age with a retinal disease which leads to incurable vision loss. In 2012 he’s raising funds through Kickstarter to direct his debut feature film "4 of a Kind" based off his screenplay, a Top 100 semi-finalist in Project Greenlight season three.
Follow Jack on Twitter @JackMarchetti.
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