With the wife at the office and my wanting to take advantage of the warm weather and a barely baptized new camera. I carefully navigated the sidewalk cracks and pot holes, and walked my way down to Dolly Madison road to attempt some shots I’ve been wanting to take since arriving in the area. Arriving at the edge of the great divide. I took to time to steady myself and compose the area I wanted to focus on. With my main focus on the soon to arrive train and two towering buildings in the foreground serving as bookmarks. I waited for my photo version of Moby Dick to come into view. This photo opportunity served several purposes, as the day marked my longest solo walk since my diagnosis, capturing a shot I’ve long envisioned, and later discovering the route to a rewarding nature walk.
Dedicated to a Better Life, and Better Photos.
Tuesday, February 7th, marked the sixth week I’ve been attending physical therapy in Washington, DC. When first recommended by my primary doctor and the specialists at Rochester, Minnesota’s Mayo Clinic. I strongly disagreed, referring to my already unyielding dedication to working out, the gym, and nutrition. Despite my skepticism and experience with past sessions where they put you on a bike and walked away. Like a good patient. I agreed to at least look into it. With due diligence, I found a highly rated/recommended place in nearby Washington, DC. My “What can they possibly do for me.” mantra went out the door during my first session. My therapist (Feeke) has been by my side, adding new and rewarding challenges each week. All of which I’ve applied to my daily routine at my condo’s gym. Since being diagnosed in 2017, I’ve had my share of challenges. All of which I’ve taken on like the stubborn son of a bitch I’ve always been. Whether it be my dedication to my workouts, meditation, tai-chi, or eating habits. Despite any challenges or disabilities. I feel as if I’m in the best shape of my life. I took the picture below in DC at about 7:43 am. The image reminded me that, no matter what, if you want to achieve anything. You have to put in the work.
When in Doubt… Part II
Following up on last night’s post “When in Doubt…” I’m coming to the realization that my days as a studio photographer might be over. Being that I spent more than four hours going through old sessions and even considering reacquiring studio lights. I whole heartedly admit to missing experimenting with studio lights, settings, modes and above all, interpreting beauty. Looking back, the road was full of mistakes, anxiety, impatience and an overabundance of caffeine. Still, when I was clicking with a subject, it was magic. Going forward, mainly due to my issues with balance and speech, I will have to find peace and balance. In the end, I hope to learn more about landscape photography and long exposure. Enough so, that I can prove myself to me.
Can’t Stop. Wont Stop.
Despite my medical issues getting worse and struggling with the challenges of having a progressive neurological disorder. I still, very much, think and see like a photographer. What I lack in balance, I more than compensate with my drive and passion to, for a lack of a better term, “find the light.” and while the day and the light still have a place in my art. I’ve become much more fixated on finding light in the darkness. No matter the subject or the struggle it might present. I’ve learned that obstacles will never curb my enthusiasm to create or disable my drive to learn and grow. Here’s to experimentation and the results that may come. (I shot the on a tripod at 100 ISO at a ’30 second delay. The F stop was 22. The photographer was full with the joys of Thanksgiving Happy Holidays.
We All Fall Down.
Though I don’t talk about it much, my balance is shot. Since my overdue diagnosis in the fall of 2017, my symptoms have gotten steadily worse. As of late, I am almost entirely dependent on a walker. Despite any issues with said diagnosis, I do my very best to do the things that bring me joy and fulfillment. Earlier this week (Monday, to be exact.) I took a walk over to the nearby Seattle Center. It not far by any stretch. However, being dependent on a walker can make things incredibly difficult and downright risky.
Needless to say, it felt good to get out and explore an area that served as my temporary residence when my wife and I first arrived in Seattle almost four years ago. The further I walked, the more confident I felt. The voices inside my head, repeating, “Come on, you got this.” You know, the one you hear from your personal trainer at the gym? Yeah, that one. It was a beautiful, warm, and sunny day. After months of Seattle rain and fog, I wanted to take it all in. After an extended stay at the Seattle Center, I began to head towards Taylor Ave before crossing Denny Way and heading home. About a block past Denny, my walker hit a curb wrong, and down I went. It must have looked gruesome because a passing car came to a sudden hault, got out, and helped me out, “My God, are you alright?” I was hurt but more embarrassed than anything. I thanked him for his kindness before carefully navigating the several blocks that remaIned. I was clearly exhausted but crossed the avenue to get a picture of this poster that basically says it all. As I arrived home, I noticed the black and blues and the bloodied jeans I was wearing. Looking back, we all fall down, whether it be literally or figuratively.The important thing is that we get back up and never stop trying,
A Visit to North Tower
After wondering for days whether the fob for the south tower worked in the north tower, I took a walk around the corner to find out for sure. When my keychain hit the spot, a beeping sound automatically opened the doors as if the heavens were welcoming me with open arms. Seeing the Space Needle up close for the first time since we first arrived in Seattle felt all warm and fuzzy. Watching the sunset and the sky turn orange is just about the most effective stress reducer around, as I’ve already taken more than enough pictures. I hope to use the space and calm to practice meditating and tai-chi. For now, I’ll feed my addiction and take/share photos.
Laying low while dusting off some old favorites.
The recent fears of a pandemic and warnings that suggest social distancing have got us trying to stay sane as we continue to spend more and more time in lockdown. As shaking hands and sharing germs with strangers has come to a screaming halt, I’ve found more and more time to read books, listen to records, and rekindle my interest in old hobbies. When I went downtown to Pike street to pick up some refilled medication. I got a real chill, seeing what a ghost town the often lively area has become. I’ll tell you, shit doesn’t get more real than this.
My Second Visit to the Mayo Clinic
When we originally came to Rochester, Minnesota’s Mayo clinic in late July, my initial three appointments quickly grew to nine and even after that, I still had a couple more that I had to postpone in order to catch my scheduled flight home. And while my initial trip gave me a lot of answers regarding a myriad of health issues. It brought up new one’s that I, myself may not have been able to answer. Still, I knew I was getting the best care ever and the doctors and nurses I saw looked deeper than anyone else had ever done when it came to my medical history.Shortly after returning home to Seattle, a second, or follow up trip was scheduled and booked. With an understanding that my two new appointments could easily multiply and stretch out into a week, we booked our hotel for an entire week. Strangely enough, our first appointment with a neurology specialist took me aback by concluding that any and all issues I’ve been experiencing in the past years were caused by the radiation I received when I was twelve. The same treatment that was given to save my life has been the cause of just about every issue I’ve had since. Not the answer I was hoping for, but one I can’t say was very surprising. After a quick blood and urine test, I was off to my second appointment with a neurosurgeon who looked as if he just came from the cutting room. By then, I had already been diagnosed and endured one of the longsst doctor visis of my adult life. So, we were both kind of phoning it in.
Still, we had five full days to explore an area we have gotten to know and love in a very short time. Later that week, we left knowing the cause of my issues while having the best Fried Chicken we have ever enjoyed at The Post and the tastiest Deluxe Cheeseburger at Forager Brewery. While I’m not exactly looking forward to what will come my way as far as my symptoms go. I’m grateful to have some answers and ecstatic over not having to receipt my full name and date of birth every time I approach a front desk or get called in for my appointment. I’m also grateful for not having to go over my medical history again for at least a year. Maybe the next time they ask, I’ll say “You’re the fucking doctor. You got that shit right in front of you.” Until then.
You’re a Lot Stronger Than You Might Think You Are
Though it might seem clique. We really are a lot stronger than we’d ever take or give ourselves credit for. I recently had a chance to catch up which both my Father and Brother. During each conversation I was asked how I was feeling and how I was handling the progressing effects of what was diagnosed as Fahrs, but is now being linked to the radiation treatment I received as a child. Gory details aside.
Both my Dad and my Brother expressed how inspired by my strength and perseverance. Here I am, struggling to walk and maintain any sense of balance and these two are telling me I’m their hero. As a kid, I was a boxing enthusiast. I played all types of sports with varied degrees of skill and success, but what I wanted most was to be a prize fighter. To me, that was tough. However, as I grew up, I came to learn and strongly believe that true strength and toughness came from the inside. The ability to overcome, survive and get past any darkness
that may have descended upon you. Still, with all those beliefs and concrete knowledge of universal truths, it’s something I’ve never allowed myself to apply to my own situation. And while I’ve always been able to feel empathy and sincere concern for those who struggle in any way. I still struggle to apply those same feelings to my own struggles. So, to all my friends, family, loved ones and anyone out there who is fighting any battle, Keep fighting, you’re a lot stronger than you might think you are.
My Visit to the Mayo Clinic.
After months of hard work trying to obtainn medical records and test results from hospitals in both New Jersey and Washington state. I was finally able to secure my appointments at the Mayo Clinic, book a hotel and flight to Rochester, Minnesota. It was a frustrating process that took months. A frustrating time where I often questioned whether or not I would be around long enough to to walk through the doors of the storied institution.
Due to the fact that my first appointment was at 7:30 am Tuesday morning. My wife and me flew in on Monday, which gave us an entire day to wander around and explore an area we had never been before.
Though I didn’t feel that going to the Mayo Clinic would help me find any new answers or a magical cure all for the progressing issues I’ve been experiencing. I arrived open minded, knowing that I would be seeing the very best doctors and getting the kind of concentrated care I had never before experienced. I’d also be giving my wife the peace of mind she more than deserves.
From my first appointment on Tuesday morning. I felt as if I was experiencing a level of care like I had never before seen. The answers of my questions were addressed and answered with a a great deal of detail and explanation. Before my first appointment ended, the initial three I had scheduled had morphed to six and by the time the days second one was over, I had learned more about my condition in a few hours than I had in the two years since being diagnosed.
As the week wore on the amount of appointments, test and waiting began to wear me down both physically and emotionally. After a blood and urine test, an MRI and a CAT scan the doctors all agreed that the calcification my my brain was creating my balance and speech issues, but questioned whether or not a I had FAHRS. Though not concluded, it seems as if the radiation for a brain tumor I had as twelve year old might be the culprit. Where I had felt so positive during my first couple of days there. the last two days there left me with a much better understanding of my condition but so many more questions than I arrived with.
What’s most bittersweet about all this is I will be returning for another round of appointments and tests in late September. Not to be negative but, I sometimes with that the original diagnosis and death sentence I received (a month to live.) when I was twelve, would have come through. I, nor my family and loved ones, would have to experience and suffer from all the bullshit that followed. And while I’d describe my trip to the Mayo Clinic as very positive. I wish I’d be returning home with a more detailed and defined outline of things.