Remembering John

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.

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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.

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Opening Up

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.

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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.

Fahr’s Syndrome

Web MD Brain Tumors

Virginia Mason Hospital

Renew Physical Therapy

Suicide Prevention

 

 

Finding Mindfulness through Meditation

For years now, I’ve tried to make meditation a part of my every day life. Quickly,  I moved from one of those people who thought “How can I possibly find the time in my busy schedule?” to “How can I not?” Since my early attempts, I’ve used basic breathing techniques to conquer panic attacks, anxiety and overthinking while cultivating a sense of peace and mindfulness I never imagined possible.

Earlier today, as we boarded the Ferry from Bainbridge Island to downtown Seattle. I found the perfect opportunity to meditate. Med-1With nothing but the sound of waves crashing alongside the boat, the subtle breeze wafting through the car window and the gentle rocking of the car due to the ferry’s pushing it’s way across Elliot Bay. I found myself removed from the thoughts of the days, weeks and months that have crowded my head and battled for space and permanence in mind. The feeling was of warmth and peace. I became so completely calm and at ease. That I hardly noticed the ferry attaching itself to the dock. As I heard the announcement of our arrival over the loudspeaker. I nodded over to my wife to notice that she too had fallen into the spell. She sleepily asked, “When we could do it again?”  I was quick to reply, “As soon as we can.” as we headed home from our day’s trip.

The more I learn about and inevitably embrace meditation. The more I want my friends and loved ones to join me. The most important thing I’ve learned in all this is that you really don’t need a special room, place, pillow or chant to enjoy it’s many benefits. All you need is a few minutes to allow yourself to check out and unplug. I highly recommend it.

The Things We Keep

As I was going through years of medical records that included but were not limited to CAT Scans, M.R.I.’s, and visits to the emergency room. I began to feel overwhelmed and somewhat depressed. While I understand that medical, W-2’s and tax returns don’t tell the true story of the lives we’ve lived and led. Seeing much of your experiences and struggles on tax return or hospital discharge can be quite the mind fuck. So when I found this envelope resting within years of hundreds of files deemed “important”. It was the life preserver that kept me afloat emotionally. While I often beat my chest about my disdain for living in the past and preserving memories by constantly reliving them. I am quite an archivist.

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I have a couple of books filled with everything from published articles to concert ticket stubs to notes passed to me in the eighth grade from my first big crush. My decision to keep or discard often come down to how these things made me feel originally or their importance to a specific time or experience. For christ’s sake,  I still have the hollow point bullet my Dad gave me when I was a kid. I’m pretty sure there was a life lesson attached, but for the life of me. Neither myself nor my Father can remember.  In no way am I a hoarder. I’m quite neat and organized. Often taking time to purge the less important things. Still, I’m often amazed by the amount of moments I’ve managed to save.

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As our Jersey City condo nears its closing date. The thought of moving back east in order to be closer to friends, family and loved ones looms large. Before deciding to take a job offer and move to Seattle, My wife left the door open to moving back to the area if life here didn’t live up to what we expected it to be. At the time, moving away from friends, family and an area I had lived the entirety of my life in, did not seem to concern me. The opportunity to live on another coast was paramount. Thus making our decision almost immediate. Visiting Seattle for the first time ever back in May and ultimately moving here in June. I was able to leave behind a lot of my worries, anxiety and stress and view life with a fresh and very different outlook. As we close in on a year here in Seattle. I can’t think of how the move has change me for the better. Sure, it rains a hell of a lot here and the area has it’s share of problems. However, my friends back East have been pummeled by one Nor’easter after another. All things considered, the idea of moving back to New York City or New Jersey doesn’t quite appeal to me as much as plotting a course for another city I’ve yet to experience or country whose cities and culture would be further explored. In some respects, the nomad spirit in me yearns for new adventures.

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No More Crying

NMCIIIt began with the best intentions. The days and weeks since my Neurology follow up had me feeling angry, lost and somewhat hopeless. I had mistakenly opened up to my doctor, therapist and wife that I had briefly thought of suicide, or commented on how I wished the original death notice I received when I was twelve would have ended me instead of prolonging my suffering through related issues. Falling down and not having the control you once had on your life it not easy to get used to. With that said and fully expressed, I had felt a positive shift in recent days that mad me feel as if I had turned a corner. I had all but stopped worrying about what I couldn’t do any more and started thinking about what I could. My intention was to share with my wife that the fear and negativity were behind me. That, whatever it took, I was going to be open minded and more constructive.

As I began to speak to her, I made a point to use the word “Positive”. This exchange was going to let her know that I was leaving behind the negativity and look at all the positives and embrace whatever changes might come. Before I even knew what was happening. Before she even had a chance to reply. She buried her head in my chest and began crying uncontrollably. I did my best to make her laugh and smile “Hey, there’s nothing to cry about. This is all about looking at things with a positive mindset.” “Come on, there’s no crying,” “I’m not crying.” She sniffled, as she reached for the nearby box of tissues. All I wanted to do was tell her how lucky I was to have two parents that loved me and a wife who, despite all my obvious faults, adored me. Still, she kept her head buried in my chest. Unconvincingly trying to conceal the fact that she had become overwhelmed with tears. “I have to pee.” She announced as she quickly made her way to the bathroom. Concerned for what she was feeling, I followed. More than anything, I wanted to comfort her. To let her know that it was okay to cry. Even with the door closed. I could hear her blowing her nose and washing the tears from her eyes. I entered and hugged her. Assuring her that, maybe for the first time since that hospital visit. That everything was going to be okay. That she could cry all she wanted to as long as she didn’t feel the need to hide it from me. “I was trying to tell you that I turned a corner and how I was feeling more positive about things.” “Why are you crying?” Still red in the face and filled with tears. She said something I never thought I’d ever hear. “Because it’s not your fault.” “You didn’t do anything wrong.” I have to say, it was humbling.

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Throughout our entire marriage and even when we were dating. She was always the strong one. The rock, the ying to my yang, or whatever you call it. Being on the other side of the coin. The one to say “Don’t worry. No matter what happens, everything is going to be alright.” It was hard, but I feel it was long overdue. Whatever may come, I hope I can always be there for her when she needs it. Considering how much she’s done for me in reinforcing my health and assuring my happiness. I’ve got my work cut out for me.

Below are a couple of helpful links.

Zen Habits

American Meditation Society

Doctors Visit

As I sat in the neurologist’s office going over recent tests we hoped would shed some light on my worsening speech patterns and balance issues, I tried to control my emotions as I felt myself choking up. As he shared the results and his conclusive diagnosis. I found myself struggling to hold back the tears and the snot bubble that was massing in my right nostril, Suddenly, as I felt my wife’s hand tighten on mine. I turned to her lovingly only to notice the tears rolling down her cheek.

The answers we had been hoping for were not there. This was a month that featured X-Rays on my shunt. An MRI and CAT Scan on my brain and enough blood work to make a vampire foam at the mouth. It turned out that my symptoms had nothing to do with a recently discovered meningioma brain tumor residing on the opposite side of the brain where my original pineal tumor (The one doctors deemed as terminal. Giving me a month to live at the ripe age of twelve.) had remained or my 2008 stroke that was brought on by a build up from the radiation I originally received to shrink said tumor. Issues that could be easily understood, treated and easily removed.

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 Back in Jersey during a March, 2017 seventy two hour EKG.

Instead, what they found was a rare, often genetic neurological disorder known as FAhr’s Syndrome. A disorder that has no cure or standard treatment. One that progresses over time, but won’t kill you. After the doctor went over each test with visual descriptions, he turned to us and said, “I wish I had better news for you.” A term which is easily translated to “Sorry, but you’re fucked.” Having amassed a stockpile of sarcasm and dark humor over the years, I asked, “If I drop you a few extra dollars for your next trip to the local strip club, would you prescribe a toxic cocktail that can put an end to my misery?” Instead of agreeing to my request, I was referred to physical and speech therapists. Complete with a follow up date and the name/number of a social worker.I was all but dismissed.  The worst part of it all, at least for me, was seeing my wife cry. We’ve been through a lot together (My 2002 shunt replacement, 2008 stroke, my struggles and sleepless nights due to an ongoing struggle with Gastroesophageal reflux disease as well as my numerous trips to the Emergency Room.) and she’s been at my side during every bump in the road. She’s a loving, supporting and very strong woman. Yet, I’ve only seen her cry twice in all our years together. Both being times when I was hospitalized or being diagnosed with some kind of bullshit.

While it’s hard for me to properly articulate what I’m about to say. Life has taught me that there’s nothing I can’t handle. I’ve seen a lot and I’ve been through more. We are all a lot stronger than we ever give ourselves credit for. Though in my case, hearing stories from friends and loved ones who were around to witness some of the things I went through was more than I could take. More than I would ever want to burden anyone with. I don’t know if I ever told anybody this, but I often feel a tremendous sense of guilt for what I put them through. In getting the news of the next gift from God. I finally shared my thoughts of how I wished the original 10/11/1982 diagnosis of “I’m sorry, but there’s nothing we can do. Your son will most likely be dead within the month.” Would have been fulfilled. Because, somehow, their saving me led to a lifetime of related bullshit that I couldn’t shield the people I loved from.

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That’s me on the right wearing a Yankees team jersey.

While my rant was not received well by family, friends, or my doctor. It was something I had been feeling and wanted to be honest about. In retrospect. I’ve lived a charmed life. One that’s granted me love, happiness and enough positive experiences to look look forward to and back on for years to come. All the negatives are just bumps along an otherwise smooth road.

 

Fahrs Syndrome Information

American Brain Tumor Association