Thanks to recent posts from friends on social media regarding health and career changes. I have decided to share some of recent experiences in the only way I can think of. Since being diagnosed with FAHR’s in late 2017. I have been experiencing many of the progressive symptoms described to me when I first learned I was suffering from this rare, little-known disorder that has no known cure or treatment. Since that time, I have experienced progressive erosion of my balance which has taken away my ability to walk without the assistance of a walker. In the twelve weeks, I attended physical therapy. I went from exercises geared towards helping me regain my balance to being instructed on how to get up when I fall. I also committed myself to five weeks of speech therapy that were both helpful and inspiring in helping me regain my voice.
Thanks to my wife, Kayuri. I have been pushed to get a second and even a third opinion. When all is said and done though. The doctors and what I’ve learned about the disorder itself. Tell me that there is no turning back and I will not get any better. FAHRs will not kill me, but it is most definitely working on making the rest of my life as difficult as possible.
The hardest thing through all of this has been me not giving myself a break, allowing myself to accept things or console with friends, family and loved ones. I’ve essentially been lying to myself and everyone else, under the rouse of protecting myself and loved ones from worrying or even wondering about me. The truth is, I’m only hurting myself by trying to pretend everything is okay. The truth is, I’ve never allowed myself to admit I was sick. The memory of my Mother telling her twelve-year-old son who was hospitalized with an inoperable brain tumor to “Not act like you’re sick.” when people came to visit, left a lasting impression. Although I know it was said with the very best intentions. It’s stuck with me since. A key reason as to why I consider opening up about being sick a form of complaining or weakness In the year or so since I was diagnosed. I’ve gone through every stage of suffering and coping possible. I struggled through depression, thoughts of suicide and anger towards my old doctor who wrote off my symptoms as post brain tumor or post-stroke and failed to schedule the proper tests that would be ordered when I first moved to Seattle. I can’t help but think that if my symptoms were properly investigated early on. Things might have been a little different.
Slowly though, I’ve finally begun to accept what the future will inevitably bring. That the people who really love and or care for me, will still do so. Opening up to friends, family and loved ones is a start and a much-needed action in moving forward.
I sincerely ask that you save your prayers, pity and worries for someone who really needs it. I am not in any physical pain. I am not experiencing or expecting to suffer any memory loss. I’m still remarkably handsome, quick witted and have been complimented on my work on the heavy bag. My wife and me have done our share of traveling while we’ve been out west and still plan to move back east when the opportunity presents itself. I will definitely be seeing many of you when we return. Until then.
It’s often I find a friend who not only shares my passion for documenting the off-limits. Even more of a rarity when one asks if they can come along. When that friend just happens to have worked with me in a studio environment. The urge to capture that beauty among the rubble is surely alluring, but then again. When will I have time to spend wandering with this friend. Why would I steal time from this perfect moment, only to turn it into something it was never intended to be? Realizing just that so quickly not only allowed me to enjoy her company. It served as a lesson in that I in order to become a better communicator. I need to become a better listener. I’m not there yet. Far from it, but knowing where I want to be heading just might get me there faster. The images I posted below will hopefully express my intention to include her while allowing her a sense of ambiguity.
For as long as I can remember. My wife has been my biggest supporter and critique when it comes to photography. She understands the way my brain works and she always pushes me to do more with my passion. Having her by my side during many of my photography trips always gives me a sense of security while providing a safety net and getaway driver when I need it most. She’s always been my second set of eyes while giving the ones in the back of my head somewhat of a heightened awareness. She’s more than happy to stop the car and pull over to indulge my curiosity and often offers to hang out for hours while I do my thing. So when we found ourselves traveling down a somewhat sketchy road in upstate New York. She didn’t seem the least bit worried when I jumped out of the car to indulge myself in the urban landscape. When I returned, my getaway car was waiting for me with the engine running. So, my advice is this. Bring a friend along. Make sure he/she doesn’t look seedy and has a good set of eyes. Be sure to feed them and provide all the things needed when building that sidekick foundation. Until then.
I really wish more of my little studio sessions were as laid back and effortless as my day with Ruthie. Though this was essentially two friends getting together and just chilling out on a less than busy day. It allowed me some time to play around with my lights and take my camera for a walk. As the day quickly passed, we shared stories, listened to music, drank wine and smoked cigars. There came a point where she looked so relaxed and comfortable. A blissful moment that was shortly interrupted when she raised her head and told me how much she hated having her picture taken. It was a strange moment, considering how incredibly relaxed and natural she looked. The simple truth of the matter is she trusted me. She felt comfortable enough around me to allow herself to relax and feel beautiful. I was pretty humbled, to say the very least. You know, I’ve always loved taking more personal pictures of friends I’ve made along the way. Making new friends through the pictures I’ve taken seems even more important.
I was on the way to Beacon New York when my phone lit up with a text reading “Citizens Arrest tickets are almost Sold Out. Get ’em fast or miss out!” I thought “Oh, I’ll order them as soon as I get home tonight.” As soon as I walked in the door I walked over to the computer to place my order. This was something I would not procrastinate on. To my dismay and dispare they were “Sold the fuck Out.” Damn, I was pissed. I’d been hearing about this reunion long before it was even book and it was not to be missed. I posted a “If anyone out there……” and thanks to Freddy Alva and the band I was covered.
About ten of us (including Freddy New Breed, Charles from Rorschach and Amy Edge) me up for a pre-show dinner before heading over to Brooklyn’s Knitting Factory. I think I missed a couple of bands, including Mind Eraser but was lucky enough to catch Asshole Parade. I’d never heard them prior to the show but really liked their sound and overall vibe. Citizens Arrest followed and the place went ape shit. Between the moshing and the stage divers I wasn’t sure I’d make it out alive. I was front center and between being thrown into the stage and about five different stage divers delivers blows to my head with boots and body fat I was dazed and at one point almost went down. All of it was totally worth because CXA kicked some serious ass. The original lineup was all there including Janis Cackers and Ted Leo. Playing so many favorites from their good old days and even throwing in covers from SSD and Youth of Today. After the set Daryl Kahan pulled my lifeless body up on stage to take a picture of the band and Fab Five Freddy Alva. It was so good seeing so many familiar faces including Rich Trash, Justine Demetrik, Javier and so many others. Thanks to Janis for the ticket and to everyone that made it such an amazing night.
As we sat and chatted over Summer Rolls and Rice vermicelli Rosie asked me “What do you want to do?” We had been talking about photography and marketing our work. Something I have forever struggled with. Her question was a good one and hit me like a bullet. I’ve been asked that question countless times since before I can remember. I can recall my Mother relentlessly asking me what I was going to do with the rest of my life since my Freshman year of High School. (Can you imagine the pressure?) Her question, as much as it may have rattled me was a very good one. As much as I want to emerse myself in every aspect of photography. I do need to focus on my strengths. As much as I love the idea of keeping myself busy with weddings, babies, travel and every other thing there is to photograph and inspire me. Portraiture is what I’m best at and what inspires me most. It’s where I feel I am at my very best. That’s not to say I don’t want or won’t do those other things. Just to focus on my strengths. Thanks Rosie. You finally got me to focus. Now if you can only get me to stop talking with my mouth full.
Sometimes an idea comes along for a fun or off the wall photo session. Other times I just like to take silly pictures of friends. This moth I’ve got plans to combine the two. The idea is pretty simple . Find some of my favorite personalities and see ho they perform in non-typical roles. Whenever I come up with a concept or idea for a project I usually have a strong visual picture of what I want to achieve. I almost always have certain people in mind. Who would fit best with the ideas I’m trying to convey. Some say no. Some take some coaxing and there are people like Mandy that are almost certainly willing to contribute. Jeez, I’ve known Mandy more than half my life. She’s one of my closest friends and someone I can always turn to. Her energy, sense of humor and giving nature are infectious. Whenever I have a show or need help on one of my projects she always says “Sure, anything to get to see you.” Now I know I’m cool. But I ain’t that cool. She’s always been there for me through the good times and the bad. No questions asked. The truest definition of a friend. I’m really glad I got to start this silly project on a high note. Thanks love.