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

 

Once Upon a Time…

I have a long history of bad dreams regarding my childhood, the places I’d been, the characters in my life and some of the crazy things I had seen and experienced. Thankfully, I reached a place in my life (a good one.) that’s given me a sense of closure that’s allowed me to look back upon those times with a sense of humor. While writing about many of those experiences has helped immensely when it came to that closure. It’s given me something I never could have expected. That being able to sharpen my memory and bring a greater sense of detail to my writing. Time and perhaps forgiveness has given me the strength and to a great extent, a chance to look back, laugh and share some of these stories with a sense of detachment that allows me to write as if I was penning fiction. Instead of waking in the middle of the night due to a nightmare. I wake refreshed with a fluent memories of an experience I haven’t thought of in decades.

One involving my Mother leaving me in the care of a very nice woman who managed or  possibly owned a dry cleaners, While I can only recall being left there once. She was a very nice lady whose storefront was highlighted by a supersized fish tank that housed some rather colorful coy. I mean, I can’t think of a better place to leave your kids. “In before 9:00. Ready by 5:00.” had to have its origins.

The other, and perhaps the head scratcher of the two, came when left in the care of my father. Considering my parents worked shifts that almost insured they’d rarely see one another. (My Mother worked the regular 9-5 as a secretary in Manhattan. While my Dad’s city job as a bus driver had him on a 3-11 schedule. As far back as I could remember, my Dad was doing a lot of side jobs making money here and there doing work for bookies and loan sharks. While there were countless times when I could tag along to the bar (Cheese burger & fries, a plate of calamari and a couple of cokes. Armed with a handful of  quarters for the jukebox. The hours would just slip away.) Or the local O.T.B.   (Off Track Betting for those not old enough to remember.) Where I could sit and watch the races on closed circuit tv or run to the corner hot dog guy for a mustard, sauerkraut and onions Sabrett.

Through the years though, there were a number of occasions where my Dad couldn’t take me along with him on his rounds and had to get creative. The local gas station on the corner of 83rd st. and Astoria Blvd. just happened to be one. Though there were three filling stations within a two block radius of my Pop’s house. My Dad must have known the owner of this particular one. During the hours and occasions I was left in his care. I don’t recall any strange goings on. There was the office (or reception area) with a gumball machine. I spent time watching the mechanics work on cars. I can recall thinking how cool the collection of tools looked on the peg board. Those roller carts that allowed them to magically disappear under the cars and oh, those awesome car lifters that would raise the cars off the ground magically. The people there always looked after me, kept me entertained and safe from the constant traffic that flowed from La Guardia Airport into Astoria Blvd.

From a very young age, I had come to love visiting junk yards whether it be for a spare car or motorcycle part. Or to tag along with my Dad when he went to collect money for the bookies or sharks, By four or five, I had come to love the smell of gasoline.

Years later though, after hijacking my Aunts copy of The Daily News. I was somewhat surprised to see that the same gentleman my Father trusted to care for me was being arraigned on charges of extortion, arson and kidnapping. It was just one of many instances when someone I knew and trusted showed up in the local news paper or led off the days TV News report. It was just a part of growing up. People doing what they felt they needed to do to get from point A to point B taught me a lot about life and the many grey areas that you find along the road.

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What’s In Your Bag?

Over the weekend I decided to pull the trigger and purchase the Canon 70-200 f4 USM telephoto lens. The choice came after almost a year of researching, second guessing and ultimately deciding on purchasing a much more budget friendly and lighter version of Canons 2.8 version, which retails at around $1,950.00. 00. It will be my first zoom lens since I purchased the Cannon f 2.8 28-135 (Not pictured here) some years ago. Adding it to my other lenses. The EF 85mm 1:18, EF 28mm 1:18, EF 50mm 1:1.4, EF 50mm 1:1.8, 40mm 0.3m/0.98ft (also not pictured here) and my trusted 15mm 1:28. And while it might seem like too much. Each lens has served a purpose and more than justified the money invested. As the lens is due to arrive on Thursday of this week. I hope and plan to use it as early as this weekend. Here’s to new glass.

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Lenses

Finding Your Peace

There are times when I can write, write, write all day. The hours just melting away as I continue to pen the next Great American Novel or put the final touches on that record or book review I’ve been working on for over a week. Then there are days like this past Monday where I’m able to get out early and often. Yesterday’s sudden burst of energy and inspiration allowed me to explore yet to be traveled, yet eerily close destinations within ten minutes of my Columbia City apartment. The first photo was taken just before noon at a little spot I found on the way home for lunch. During my short time there. I couldn’t help but notice how calming the fresh, cool air and the water felt. I’d imagine a lot of folks going there to clear their mind while enjoying the peace and quiet. It was during my time there when I met a sweet pit bull named “Woof”.

Close by

The second picture was taken at Sunset just a few blocks west of 15th Ave. S. Due to the cold and the fact that I had pretty much attained what I wanted. I began tthe walk back to my car. It was then when I noticed this van with the sunset perfectly reflected in it’d side window. Having watched several documentaries featuring people traveling the country in vans just like this one. I was ready for someone to emerge just as I focused my lens. That, or a full on zombie apocalypse. Luckily, neither occurred as I was able to get in my car, head home and warm myself with a hot cup of coffee. At the end of the day, I’m glad I decided to try something different by taking a few side roads and allowing myself to get a little lost.

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Local Escapes

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It’s Sunday and I’m still trying to finish a music review that, by all means, should have been finished and submitted this past Friday. After writing chapters extolling the virtues of this particular artist and their thirteen-song opus. Still, I hang on word, a sentence or the right description that will close out this upcoming release. Words that will allow me to finish and submit . Words that will allow me to go on with my life and maybe, just maybe, die a happy man.

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Knowing that, once again, I would not find the right words to properly articulate my feeling on the subject. I loaded up the mini cooper with my camera and bag of lenses I would not be using and drove to nearby West Seattle and Seacrest Park for a few photos of downtown Seattle. Though the sky was blue and the sun was shining bright. It felt as if this was one of the coldest days I’ve experienced here. Still, the chance of a blue sky and a clear day in Seattle is hard to pass on.

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Sun Drenched Seattle

GTIIIDuring my time in Columbia City, I’ve become rather familiar with the roads, streets and avenues that connect me to the places I like to go and need to be.  As Georgetown and West Settle have become regular destinations. I’ve become quite used to traveling from Alaska Way on to South  Colombia Way. When heading to Georgetown, like I’ve done the last two days. I remind myself to make a left at S Angeline before heading down the hill and to the left on cross street. Each time I do. I can’t help but think of stopping for a bit to admire the view before taking a few photos of the power lines that seem to cut through the backyards of the homes there.

Being in somewhat of a rush and the fact that it has rained every day in Seattle for over a hundred years, (Ask anyone.) the chance to stop and smell the green, green grass hasn’t exactly presented itself. Last night while driving down the same street. I decided to put it on my bucket list and set aside a less than rainy day to get a few shots.

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So today, when the rainy morning forecast turned to sun. We jumped in the car and headed on that same route to Georgetown where we basked in the sun and enjoyed bottomless cups of Joe at All City Coffee. All in all, a pretty good day. One in which we were able to take advantage of the beautiful weather while staying pretty local.

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