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.
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.
Since making my appointment with Rochester, Minnesota’s Mayo Clinic close to a month ago, I’ve caught myself referring to the weekend of 07/27 – 07/28 as “my last weekend.” Though not intended to be morbid or prophetic of any kind, I somehow equate this long awaited trip to be somewhat of an ending or beginning of some sorts. These next few days will mark what I see as the final chapter of my search for answers. After several years of my troubling symptoms being written off by my asshole doctor as post brain tumor, post stroke symptoms. I finally sought treatment outside his umbrella of short sighted ignorance which eventually rewarded me with the knowledge that I had another brain tumor and later finding out that I had a rare, virtually unknown neurological disorder known as Fahrs. One that had no cure or known treatment.
While I do expect this coming week in Rochester to be helpful. My expectations regarding any breakthrough information are almost non existent. Instead, I’m hoping for a sense of closure, as in ways to adjust my lifestyle while moving forward. instead of looking back in anger, asking why. I hope to live in the present, moving and thinking forward. Adjusting to and facing any challenges this disorder might throw my way and tackle the head on. In the end, what’s life without living?
With another birthday and wedding anniversary in my rear view window and a trip to Rochester Minnesota ‘s Mayo Clinic just days away, I’ve still had plenty of time to reflect on life in general. The things and people that bring me the most joy. How my love for exploring and seeking out adventure and beauty in places that others might not tred. Despite age and an ever changing bag of bones. I still want to hop fences and climb trees. I still see “Do Not Enter” and “No Trespassing” signs as open invitations and warm welcomes to step inside and take a look. As the days grow closer to my trip and what I consider my final search for answers regarding my condition, I find that I’ve become calmer and more accepting of what’s been a progressive downhill when it comes to my symptoms. There are still many fences to hop and trees to climb . Though I might have to find new ways to do so, I’m more than up for the challenge.
As I recall. We were standing in the back yard of the home he and my Mother purchased when they were first married. At the time, my Dad had gone from having a steady city job driving a bus to a re-invented, self employed business man.
I recall being somewhat angry and showing some aggression towards my Father. Suddenly, perhaps understanding and wanting to quell my anger. My Father took my rather small hand in his, opened my clinched fist and placed a hollow point bullet (the same one you see pictured on the right.) without speaking a single word. While I didn’t quite understand its true meaning at the time and it’s come to mean a lot of things to me over the years. These days, I realize that he was trying to teach me that our anger, if not managed, can lead us down dark and dangerous paths.
While a short time in retrospect.,(maybe five or six years.) my Father may or may not have bent the rules of what some might consider legal. During that time, my experiences and the people I met along the way enabled me to see the world much differently from what I was being taught in Catholic school. It taught me that things are seldom black & white and that most situations contain a lot of grey areas. The things I experiences and exchanges I was given access to, taught me more than I would have ever expected. Til’ this day, more than thirty five years later, I still keep that hollow point on the end table by my side of the bed. It has never since see the chamber of a gun and surely never will. When I do pick it up and let it roll around in my palm, I often think of my Dad and that important part of our lives. The stories, the characters and the many things life taught me.
Shortly after arriving home yesterday, I received an email notifying me that there was a package waiting for me in the buildings office. Knowing that in was probably the latest batch of records I ordered from my favorite music distributor, I raced downstairs before even bothering to put my shoes back on. Upon breaking the seal of a vinyl reissue of a cherished demo from the late 80’s. I was somewhat shocked and dismayed to see one of my photos within a collage of others from the time. Shocked, considering I didn’t know how the record label acquired it. Dismayed considering I was never approached, notified, credited or compensated for its use. Feeling angry and somewhat betrayed, I knew I needed to get some fresh air. Over time, I’ve learned a lot about myself and managing I’ve often found that physically removing myself from a situations can go a far way towards easing any stress, tension or anger I might find myself being overwhelmed by. Luckily, with a park, lake and bay just minutes away, I’m able to do so. The chance to practice my tai chi, breathing techniques and take a few pictures can often change a mindset. In being able to combine all three, the thought of someone using a picture I took about thirty years ago seems pretty insignificant in the overall scale of things.
When we arrived at the beach, I was amazed to see a stable of horses assembled on the sands just steps away from the ocean. It was my first trip to the Pacific Ocean since my last trip to Japan in 2012 and my first ever glance from the United States. The horse were bused from a local stable and were close to ending their work day by the time we arrived. While I was eager to capture some images before they began their sojuorn home. I couldn’t help but think how cool this image would look without the rope that kept them from rushing forward. Upon arriving home, I inspected the photos I took before reaching out to my old friend and neighbor. (The one who basically taught me everything I know.) and asked him to magically remove those barriers that hold us back. While we’re here, I’d feel remiss if I were not to include a link to his work. I’ve attached before and after images below as a link to Kevin’s photography, Here