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.
Whenever someone likes one of my posts, leaves a comment or decides to follow the blog, I receive an email notification from wordpress. Though this has become standard for some time. I admit enjoying the sense of anonymity that comes along with the comfort zone that accompanies the feeling that I can share a thought, opinion or experience with people I don’t really don’t know. So, imagine the surprise when I checked my email this morning only to find out that my Mother was following me. Now, don’t get me wrong, I love my mother and feel so lucky to have her in my life. That said, she does not and never has respected my rite to privacy and personal space. I have to admit, I had a lot of feelings regarding her visits and initial decision to click the follow button, including putting an end to the blog and refraining from continuing to post my darker, personal biography. In the end though, I’ve decided to stay the course and write whatever the fuck I want.
In moving to Seattle, Washington from Jersey City, New Jersey. I had some fear that much of the toxicity that had become a part of my daily life for so long would follow me out west and cast a negative cloud on whatever changes I was hoping to undergo. Despite a rather grim diagnosis just months after arriving in the great northwest. I’ve manged to maintain a decidedly positive outlook. Now, by no means does change come easy. Everyone is different and their isn’t a one fix fits all remedy out there that I’ve seen or heard of.
Since being diagnosed with a chronic illness. I went through a number of emotions that included depression, anger and self blame.. Throughout, my one constant has been trying to define what truly makes me happy while sustaining a balance that can nourish and fulfill my soul. The more I’ve searched. The more I come to realize how much the little things play a major part. When listing my favorite things, music, photography and maintaining a level or creativity on a daily basis are the first things that come to mind. However, the more I search the more I’ve come to understand how much joy comes from sharing or preparing a meal with my wife, traveling and sending silly texts to my younger brother.
As we get older our priorities change as often do the things that attract our interest and show up on our shelves. The solitude and alone time I often seek and have learned to enjoy, only improve my ability to socialize. Training myself to limit the people I let into my life and not getting caught up with too much bullshit has helped tremendously in cutting down on stress, anxiety and many of the ingredients of my once toxic personality and lifestyle. While my posts do get there share of likes these days. I would love to see some of your strategies, techniques and practices for dealing with stressful situations and day to day anxiety.
As I sit here in the coffee shop I can’t help but feel overwhelmed by the combination of Seahawks fans stopping off for a drink before heading to Sunday’s big game and ever present population of homeless who use the shop for their bathroom visits and to charge up their electronic devises. One who took up four tables while doing so. Things I’ve come to both expect and accept as a coffee loving, coffee house freak. Having grown up in what could be considered as a suburb of New York City. (Jackson Heights, Queens to be exact and having lived in a section of Manhattan once known as Hell’s Kitchen. I’ve been used to feeling quite comfortable living within very varied surroundings. However, it wasn’t until I began traveling extensively, especially the country and farms. For it was on those trips and excursions that I found my true peace and happiness. So much so that, years after my move to New Jersey. I found myself opting for weekend trips to upstate towns and farms more then the possibility of hopping a train or a bus to the city. Having enjoyed both in my lifetime. I would never judge or criticize anyone for the lifestyle they choose. I’ve experienced both at different times in my life and both have provided countless rewards and lessons. I just feel that after a lifetime of city life. I might be opening up to something different. For now, my little weekend getaways are the perfect balance I’m looking for.