My Story

Beginning.

I was drowning! The river’s water was rushing all around me and my dad lept in to save me from an early watery grave.

— Dad saved me from drowning when I had a seizure after I jumped into the river…

When I was 12 or 13 years old. The family went on a weekend camping trip. It was the 5 of us. My mom and my dad, my two younger brothers, and me. It was a summer day and we had set up our trailer in a little camping spot next to a river where we could enjoy all the benefits of the outdoors.

Next to our campsite was a short wooden dock where we could walk out and get a good look at the river’s impressive width. My two younger brothers had recently been given a Razor Scooter for Christmas and were taking turns gathering speed and jumping off the dock and into the cool water to take off the bite of the sun’s hot blaze. They laughed and excitedly played with the the scooter and the water as My Dad, Mom, and I were supervising on the safety of the grassy shore.

I remember thinking at that time, I would rather be hot than be wet! The teenager in me was starting to come out, but after watching my brothers have all the fun for nearly half an hour, I finally gave in and sped along on the scooter off the dock and splashed into the water.

My vision was shielded by a wave of dark blue. The sound of the splash was loud and as I decended I felt that familiar tingle in my body that signaled to me that I was not okay. Unfortunately I was at the bottom of a river and I could not signal that I was having a seizure to anyone on shore.

As the seizure runs its course, my body goes limp and I convulse briefly in the water. Water starts to fill my mouth and my lungs as a splash touches down nearby. I am pulled from the depths and my still limp body is dragged to the shore where I am safely laid to rest.

My insightful and watchful dad noticed that I had not immediately resurfaced like the younger two children had. Knowing of my condition and prepared to sacrifice anything for his son, he jumped in to save me fully clothed. Wallet, camera, glasses, shoes, and all, grabbing me by my limp waist and pulled my ashore like a dead weight.

Middle.

…That’s what my arm felt like. Dead weight.

As I picked it up and let it go. It fell like a sack of rice with an audible thud. There was absolutely no feeling at all either. You could have broken my fingers one by one and I wouldn’t have felt a thing. To arrange my hand in a more “normal” position I had to sculpt it into position like dressing a manaquin for a display. The arm needed to be supported and then the elbow, then the wrist. Then each- individual- finger. This practice was important for proper rehabilitation of my muscles and limbs.

Fresh out of brain surgery, I had no control or feeling over the left half of my body. This was a challenging time as I had to relearn how to do many simple and important day to day things (Some more embarrassing than others). However, I was very optimistic in this opportunity for change and growth! I was fully aware and had prepared for the challenge that I had stepped into. I simply had a goal to become twice the man that I was previous.

This included not only my physical body, but my mental faculties. I was suprised how dumbed down my brain became the moment I woke up from surgery. It was like I was reborn at the age of 3. I could not draw correctly or read the clock. I had a real challenge drawing a clock correctly and made a few sketches of this process. I recovered my mental copacity quite quickly and the next stage was to start to get my limbs working again.

At first I could blink. Big achievement. Next was move one finger. Wow! What a rush. The feet where harder. So it took some time. I stayed in the rehabilitation center for two weeks training my body (and brain) to move like normal again. I had a lot of free time to read, write, draw, and think about art and photography.

With my new found brain, I found some wisdom. I developed a focused approached to photography like never before. A philosophy if you will. To this day I continue to blend a mixture of art, philosophy, and photography into one. This is my thoughtful approach and it is why large format photography appealed so much to me during that time.

During my stay in rehab, I was redefining my definition of art. I have screenshots from my phone that I have researching the definition of “fine art.” (creative art, especially visual art whose products are to be appreciated primarily or solely for their imaginative, aesthetic, or intellectual content.) I had a burning desire to create a visually compelling work of art that was aesthetically beautiful and intellectually compellting.

Art.
”Do you still draw?”

Photography was never on my mind when I was in school. Getting my education for fine art, I did not think twice about photography being an art form. However, that all changed when I had a gap in my schedule and I needed to fill it with an elective class for credit. I looked around and I rolled the dice on Photography 101.

I was 27 at the time and before then I could count on my hand the number of times that I used a camera. I was well trained in the classic arts and had a serious and well developed foundation for drawing and painting. Ironically it was this one class (along with a philosophy class later in my Senior year) which solidified my departure into photography.

My first camera was a Canon AE-1 Program with a wide angle lens. I made many mistakes and this was a fun and exciting time. However, my interest in the medium grew exponentially because of my foundation in art.

I visited my photography professor for a private review after graduation. I showed him my street photography work and he was unmoved. I had been calling myself a photographer for at least a year at this point. But in hindsight it was nieve of me to give myself such a title. He knew that I was looking for feedback and he knew that I was an award winning artist. His advice planted the seed that lie dormant until it was ready to spring forth and reveal its potential. His advice was, “You should try large format.”

Large Format.
”Bring me my large format camera and don’t forget the film holder!” I said to my girlfriend (now wife) as I was lying in bed half paralyzed from brain surgery. It was not even one week after my operation and I still could not life one finger on my left hand. She came with my 4x5 Graphlex press camera and one film holder which I preloaded… God knows when. I didn’t know the last time I used the camera. Maybe a year before, all I knew was there was 2 sheets of film in the holder. On this day, January 12 2020. I was going to make a self portrait on my large format camera and I will make one every year on my large format camera. Detailing the highlights of my life.

I was wheeled into the common area with morning sunlight streaming through the windows. There were large tables and chairs in the center of the large room where it was populated with some activity of people playing puzzles or performing movements to improve physical and mental strength. I had been here before so I knew this was a good place to set the camera on a flat surface and make a picture since I did’t have a tripod. What I didn’t realize at the time was that I couldn’t compose or focus the camera. My goal was perfectly clear, I am making a self portrait here and now.

My nurse was kind enough to help me scoot my wheelchair into place and one end of the table in front of the window. Setting the camera on the large, long table, I instructed her how to focus the camera and left the composition up to chance. I was so weak and it was such a challenge to hold myself up and release the shutter at the same time that I ended up failing the first time. I was aware of this when I heard the click of the shutter.

SMALL IMAGE

Reverse the film holder, cock the shutter, pull the darkslide, stretching my good arm out to place on shutter release, holdstill, my strength is fading… Click!

LARGE IMAGE

It took over a month to see these how this photograph turned out. But I was blown away by this photograph. In one photograph, I feel it describes that moment in time very well.

While not a technically perfect photograph, it captured the raw, out of body experience I was feeling with the unconventional composition.

Over the next two weeks I would relearn how to perform basic tasks of everyday life. Such as, how to use brush my teeth, how to dress myself, how to use the toilet, how to shower, how to walk, how to walk outdoors. I was carving new paths in my brain and this was the perfect opportunity to carve in a new path in photography.

It was coincedence that when I saw the result from the above photograph, my friend let me borrow his more advanced large format camera setup. This was when I was starting to get back on my feet and back into society. I was returning to work, but I had sold my Leica M3 camera and lens to make many of the photographs you see in the day to day hospital experience that I documented. With that money, With that camera my friend lent me I walked all over the neighborhood, going further and further out my front door to challenge my strength. Building up more and more endurance with every outing and raising the benchmark with every exposure.

It was like the days with my first camera again. I was making experimental photographs that were just fun and I was simply enjoying life and observing the new possibilities that life had to offer.

“This book was waiting for you.”

My drawing professor, Doug Durrant, showed us old films of artists on a monthly basis and one that I remember very fondly was one about the Chinese painter, Diana Kan. Watching her hand flow elegantly and effortlessly across the paper, drawing and painting Chinese landscapes with such mastery that I was in awe as a 23 year old art student. My professor had a book written by her and showed it to the class. I summoned up the courage to ask him to burrow it.

It was called, The How and Why of Chinese Painting, it was heavy yellowed and had a torn cover. Surely it had been looked through by many students or by Doug himself. But I was gravitated to this new discovery of Chinese Painting and could not let go of it.

I thought I was just an ordinary kid who could play just like all my other friends. I thought this way until my Dad saved me from drowning when I had a seizure

For over 20 years I was afflicted with a seizure disorder, so finding a starting point in all that time is quite difficult to pin point. The amount of memories are overwhelming at times. I could count on many hands the number of instances that could be influenced or accounted that affected my life. Althought, perhaps it was not the most signifigant memories that had the largest impact on me. If fact it, living day to day that made the most impression on who I am today.

Recalling an event that happened from my daily life, in relation to my disorder, is not a pleasant one. Finding signifigance in any one day may be difficult to pinpoint. However, it seams fitting that the day when I first had what’s called a “grand mal seizure” is still fresh in memory.

It seemed like any other day when I was 14 years old. I had been living with this epilepsy thing for about 4 or 5 years now. I was diagnosed at 10 years and been taking medication ever since then. Dispite taking medication morning and night, I had small seizures regularly and this felt pretty normal for my life. At age 14 I would have very breif seizures every 2-3 days. These episodes did not put me out of my everyday life. I would simply extend my stiff arm out and stare out into infinity for about 10 seconds, waiting for it to pass. Then when it was over I would continue to carry on like normal, like nothing happened.

This feeling all changed when I experienced a different kind of seizure I had never felt before. Later, I would come to know it as a grand mal seizure. But in the moment it was the most terrifying experience I could imagine. I will try to describe it here.

When you are in the dream state, everything you are doing in a dream feels unreal. You get chased by dinosaurs, drive off a precarious cliff, or get stabbed in the belly without pain or even harm. The odd thing about dreams is that sometimes, dreams feel real. Have you ever had a dream where you felt you where actually being chased? Or actually driving into a dangerous situation? Or fighting a battle without the strength to win? These dreams are pretty common since they are usually based around a fear in the real world.

What does this have to do with the seizure? Well, That feeling of fear when you wake up. That intense fear from a nightmare, when you feel like you are going to die from the intense emotions exibited from your dreams. That’s the feeling I’m talking about. Luckily for the normal person you realize within a few moments that you are awake and the fear from the dream slowly receads and you feel normal.

Unlickly for me, this is where the grand mal seizure is totally different. What is a grand mal seizure like? It like that fear from a nightmare, but you are trapped in limbo between the waking and unwaking worlds. The seizure starts in the deep sleep stage, when the brain in most active and as the seizure gets out of control it spreads like a wildfire to other areas of the brain. Causing full body convulsions, elevated heart rate, and labored breathing. This will last for 2-3 minutes.

I have always said that I was always concious during my grand mal seizures, but I have come to learn (Thanks to my wife) that I am only lucid during about the last 30 seconds or minute of the seizure. Through cleanched teethh, moans, and sweat soaked sheets I must endure these 3 minutes with painful agony.

- There is the psychological side and then there is the physical side. First the physchological side. That feeling of fear when you wake up. That intense fear from a nightmare, when you feel like you are going to die from the intense emotions exibited from your dreams. That’s the feeling I’m talking about. Luckily for the normal person you realize within a few moments that you are awake and the fear from the dream slowly receads and you feel normal. What is a grand mal seizure like? It like that fear from a nightmare, but you are trapped in limbo between the waking and unwaking worlds.

Then there is the physical side. The seizure starts in the deep sleep stage, when the brain in most active and as the seizure gets out of control it spreads like a wildfire to other areas of the brain. Causing full body convulsions, elevated heart rate, and labored breathing. This will last for 2-3 minutes. Through cleanched teethh, moans, and sweat soaked sheets I must endure these 3 minutes with painful agony. I have described this a sprinting for 3 minutes flat. This is how laborious the full body seizure feels.

Once the body finally stops seizing and convulsing. It sadly does not end there. The brain and body are completely drained and exhausted. I cannot move and must rest and recover for at least 30 minutes in order to hobble my way onto my feet. I am tired and deathly thirsty. My left side does not work fully yet, so it is a challenge to make my way to the kitchen just for a glass of water. Running into the walls and doorframe as I use anything on my way to support my glistening naked body.