Somewhere between awareness of my symptoms and diagnosing them came knowledge and acceptance that things might get a lot worse before they ever or never get better. While a pretty hard pill to swallow, (No pun intended.) I feel lucky that I have such a fantastic support system in my wife, family, friends, and doctors. However, there is one thing in particular that has become harder and harder to accept as time goes by. That is, people always checking in on me and asking how I’m doing. Arguing with and fighting over her being too helpful or over-attentive. As time goes by, I feel myself becoming more resistant to help, while closing myself off to others. I also notice that it doesn’t take much to light my fuse or lose my temper. Whether it be snap reactions or just getting angry over things I can’t control, I’ve come to fear of becoming a cranky old son of a bitch than an optimistic one. As I move towards a new year and a new decade, I hope to move forward by taking somewhat of a step back to the practices I approached and learned from in the past. Simple things, such as meditation, breathing techniques, eating, and exercise, could all help while bringing improvements to my attitude, as well as my life. Hopefully, these little things can help in bringing me the peace of mind and mindfulness I so desperately seek.
I spend a lot of time thinking about the kind of pictures I’d like to take. As someone who became interested in taking pictures in his teens, but didn’t own an SLR until his mid twenties. While debatable, I’d say photography has become the greatest passion in my life. As someone who made his name as a music photographer, built a strong portfolio as a studio photographer and worked continuously on a project called “Left Behind”. I feel that I’m always dedicating whatever spare time I have to learning, testing and putting new projects to work. It wouldn’t be overstating if I said it was. While my time on the East Coast offered an abundance of beautiful sunsets. Living in Seattle, an area with many lakes, bays and waterways at every turn. I have long imagined myself waking up in the early hours and driving to a spot where I can watch the sun rise.
As far as good intentions go, Friday morning’s eary trip to the docks on Harbor Avenue to watch the sunrise were as good as they come. It can’t go without saying that waking up and standing by Elliot Bay waiting for the first signs of the sun in freezing weather kind of wrecked us for the rest of day. Still, crossing something off your list definitely has it benefits and rewards. Energized by a day of napping and sampling a wide array of Thanksgiving leftovers. We were recharged enough to endure a two hour trip for hearty plates of pancakes, eggs and delicious biscuits. Fairhaven, Washington seemed the perfect destination. Though we didn’t pick a place the night before. Finding a parking spot right in front of a local eatery worked perfectly for two hungry souls who had driven two hours on empty stomachs. Though Fairhaven’s downtown is quite small. There’s enough shops and goings on to keep people entertained and making frequent returns. By the time we finished eating and walking it off, it was time to hit the road again. As usual, the sun began to set and we pulled over a few times to enjoy what is for me, a perfect time to breath and reflect on just how good things can be if you let them. Aside from almost falling in a ditch and running into oncoming traffic, I’d say I did pretty damn good.
If you let it, life can teach you a lot of things. Some of the most important things I learned were about empathy and how much of the happiness we enjoy comes from helping others. No one is perfect and we all carry scars we often wear for all to see. There’s nothing wrong with making mistakes, as long as you learn and grow from them. I’ve yet to meet anyone who hasn’t made a few. Even the strongest take a beating every now and then. I know this from my own experience.
I learned to defend myself and fight at a very young age and with all the broken noses and black eyes I delivered as a kid, It was the first beating I took, that stands out the most. I’ve had my share of battles outside of the schoolyards and streets. We all have. What’s most important is that we never give up or settle. In the end, it’s how we treated others. If there ever comes a time when we’ll be judged or remembered. It will most likely hinge on how we overcame life’s obstacles and how we treated others. In the end, I hope to leave a positive footprint on those I have encountered.
I’ve quickly found myself becoming an angry old man. You know, the kid of one who shakes his fist at the clouds and yells at kids to get off his lawn. Considering I was an angry kid and an angry adult, this should come as no surprise to me or anyone who’s been lucky enough to know me for a while. Still, maybe for the first time in my life, I find myself attempting to relearn how to think and go about my life without judging others and perhaps be a tad less harder on myself.
Forgiveness and closure are powerful tools that have brought me more peace than I could have ever wished for. While I’m still learning and trying new ways to balance life. Having overall lower exceptions when it comes to myself and others has been a game changer. I still struggle to find that balance and overall acceptance that, no matter how much I wish it, we do not live in a perfect world.
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.
A few years back during a visit to my gastroenterologist, he told me that he was just sharing with his secretary how inspired he was by me and my ability to bounce back from each medical setback, emerging stronger and a bit more wiser. Being that I had been seeing him for an entirely different set of challenges for close tot fifteen years, he had seen me move from one health setback to another. While I was taken aside and visibly humbled by his words, all I could come up with was some gibberish about how, after all these years of fighting, I was tired and I wasn’t to sure I wanted to fight anymore. Note that this was a few years prior to my latest discovery of another brain tumor and being diagnosed with a neurological disorder that has no cure or known treatment.
Still, to this day, I find myself fighting and adjusting to meet new challenges. Truth is, we’re all a lot stronger than we’ll ever give don’t give ourselves credit for. No matter what a person, or doctor tells you. It can’t override your desire, strength or determination to make the most out of what you have.To be happy with what you do have or can do and not to be preoccupied with the things you don’t.
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.
John was good, very talented soul. A tall red-headed gentleman with a gifted voice that could carry you to the moon and quick sense of humor and that would send even the most cynical asshole into uncontrollable tears of laughter. Like many good souls. John had his demons. One’s he would keep to himself throughout his life. His way of dealing or not dealing with these unresolved issues was drinking. On the occasions where he did hit the bottle. He would often drink to excess and to the point of no return. In the end, it was his addiction and love for guns that would lead to his suicide.
While on many occasions John’s drinking and gun play would end with a few gunshots and random bullet holes in his family’s home. His wife always seemed to perfectly time her departures and calls to the local police. During what would turn out to be John’s last implosion. Instead of firing some shots into the home’s interior. He pointed the gun at his head. Threatening, “You don’t think I’ll do it.” “You don’t think I could.” Pleading for him to put the gun down while gripping their young, screaming child. She reached out to him as he pulled the trigger.
Hearing the news, even years later in a conversation about my Father’s history of drinking sent shock waves, though never intended on my Father’s part through me that would echo for years to come. Less than a year later, I would be hospitalized for panic attacks and anxiety related issues. John was more than a friend to my Father, Mother and myself. He was part of our extended family. I still have the pictures from me and my Dad’s first visit. The pictures of him and Stallone on the movie set. As well as visual memories of the Queens garden apartment he shared with his soon to be wife. Though recalling his suicide was painful. Thinking of him brought back memories, many good ones, I had either buried or forgotten. Little adventures and excursions to the local parks and fields with our dogs. His great big smile, barreling laugh and infectious sense of humor. My fondest memories of John will always go back to when I was a very young child and both he and my Dad had city jobs as bus drivers with Tri-Borough Coach. As a kid growing up in an imperfect world with it’s own problems and imperfections. He was somewhat of a super hero to me. Someone I loved and looked up to. He never revealed that dark side to me. Which, for better or worse. May have been a reason why I took the news of his suicide and underlying issues so hard. News that brought on some pretty intense panic and anxiety attacks. Looking back , I’ve learned from experience, to remember people for all the good they did and the many positive impressions they left on you. Focusing on one negative incident or action will never impact you in a positive way. Though it’s taken me years to fully realize that. I’m happy to recall so many of the good things John and many others added to my life. Acceptance and forgiveness go a long way when it comes to finding peace of mind and closure.
For close to a year now, my doctors, therapists and my wife have urged me to open up about my health issues and the issues that accompany them. Knowing full well that trying to protect myself and loved ones from worrying about me and or thwarting their insistence on helping me, has only hurt me. Hasn’t helped in any way, form or matter. My attempts to hide symptoms and an overall fucked up long term outlook have only made me angrier and wasted much of the time I could have better invested elsewhere.
The hardest part by far has been trying to keep my parents at a safe distance. When I first arrived in Seattle. I had already been experiencing symptoms that my primary doctor of close to ten years had pretty much reduced my mounting issues as post brain tumor, post stroke relate issues. While numerous blood tests were ordered and performed over the years. Little more was ever suggested or done. It wasn’t until I went out on my own and booked an appointment with a nearby neurologist that my issues were properly addressed and tested, that I found out I had a meninigioma brain tumor. Not a threat to my life, but something else to worry about and keep track of.I was angry at my doctor for his lack of action and insight, but I also couldn’t help but blame myself for trusting him for so long.
Fast forward a few months, my symptoms worsened. I made connections with the right doctors and hoped that removing the new brain tumor would right the course. Further tests were including an MRI and CAT-Scan followed. The results were nothing I ever expected or be prepared for. I was told that alarming amounts of calcium had massed on my brain and I had a rare neurological syndrome/disease I had never heard of. One that had no cure and no known treatment. One that was progressively erodes your motor skills while wrecking havoc on your speech.
I was given a referrals to speech, a physical therapist and a social worker, My requests for a drano cocktail and a handgun were turned down and taken as a sign that I might be a suicide risk. (Note. New York humor and Washington State humor are very different.)
Since that October meeting. I found a great physical therapist just a few blocks from me. My social worker (One I really appreciated having.) moved back to her home town of Minnesota. I’m on my second walker, one which I need to get around with and one that keeps me from falling down and injuring myself. And while I’m being mentally prepared for a future in a wheel chair. I am doing everything in my power to remain active and positive. I’m boxing, lifting weights, going to the gym, writing and traveling as much as possible.
In the end, the hardest part has been opening up and struggling not to internalize my feelings or blame myself. I know what my friends and family went through during other life threatening episodes in my life. Because of that, I’ve tried to do everything in my power to shield and protect them from any pain, worry or complicate things any more than possible. I’m already feeling an immense pressure trying to keep my family at bay, while keeping them as informed and updated as possible. Opening up gives me the chance to breath again and say “I’m alright.” “Just give me the space and time I need to deal with things. I’m not writing this to worry anyone or look for sympathy. I won’t be starting any “Go fund me” bullshit. I’m just hoping for some acceptance and understanding. Below are some links that I thought would be helpful.
Web MD Brain Tumors
Virginia Mason Hospital
Renew Physical Therapy