Thanks to recent posts from friends on social media regarding health and career changes. I have decided to share some of recent experiences in the only way I can think of. Since being diagnosed with FAHR’s in late 2017. I have been experiencing many of the progressive symptoms described to me when I first learned I was suffering from this rare, little-known disorder that has no known cure or treatment. Since that time, I have experienced progressive erosion of my balance which has taken away my ability to walk without the assistance of a walker. In the twelve weeks, I attended physical therapy. I went from exercises geared towards helping me regain my balance to being instructed on how to get up when I fall. I also committed myself to five weeks of speech therapy that were both helpful and inspiring in helping me regain my voice.
Thanks to my wife, Kayuri. I have been pushed to get a second and even a third opinion. When all is said and done though. The doctors and what I’ve learned about the disorder itself. Tell me that there is no turning back and I will not get any better. FAHRs will not kill me, but it is most definitely working on making the rest of my life as difficult as possible.
The hardest thing through all of this has been me not giving myself a break, allowing myself to accept things or console with friends, family and loved ones. I’ve essentially been lying to myself and everyone else, under the rouse of protecting myself and loved ones from worrying or even wondering about me. The truth is, I’m only hurting myself by trying to pretend everything is okay. The truth is, I’ve never allowed myself to admit I was sick. The memory of my Mother telling her twelve-year-old son who was hospitalized with an inoperable brain tumor to “Not act like you’re sick.” when people came to visit, left a lasting impression. Although I know it was said with the very best intentions. It’s stuck with me since. A key reason as to why I consider opening up about being sick a form of complaining or weakness In the year or so since I was diagnosed. I’ve gone through every stage of suffering and coping possible. I struggled through depression, thoughts of suicide and anger towards my old doctor who wrote off my symptoms as post brain tumor or post-stroke and failed to schedule the proper tests that would be ordered when I first moved to Seattle. I can’t help but think that if my symptoms were properly investigated early on. Things might have been a little different.
Slowly though, I’ve finally begun to accept what the future will inevitably bring. That the people who really love and or care for me, will still do so. Opening up to friends, family and loved ones is a start and a much-needed action in moving forward.
I sincerely ask that you save your prayers, pity and worries for someone who really needs it. I am not in any physical pain. I am not experiencing or expecting to suffer any memory loss. I’m still remarkably handsome, quick witted and have been complimented on my work on the heavy bag. My wife and me have done our share of traveling while we’ve been out west and still plan to move back east when the opportunity presents itself. I will definitely be seeing many of you when we return. Until then.
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.
It 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.
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.
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.
It’s been close to a week since my Mom’s first visit to our new home here in Jersey City. During her week here, I made it a priority to capture some intimate images of her stay. Being that we’ve lived so far from one another for over twenty years now. I don’t get to see her nearly as much as I’d like to. While her stay had it’s share of ups and downs. It reminded me of how much I love, respect and appreciate how much she’s shaped the person I am today. By far my favorite moments of her visit was seeing her interaction and the positive foot print she left on everyone she met. Her smile, positive outlook and ability to make complete strangers feel like family are inspiring. Looking back at her visit, I realized that the thing I enjoyed the most was hearing her speak in Spanish s0 often with anyone and everyone she new spoke the language. For me personally, it’s always been one of the many traits that made her so beautiful. Till this day, I still remember the first words she taught me as a baby “Dame Un Beso.” (Give me a kiss.) All these years later, I still tell people about my first words and about what an amazing woman my Mother has always been. Despite all our differences and endless similarities. We still love one another to the fullest. Thanks Mom.
As I passed the fountain in Washington Square Park. My attention turned to a Father playing with his daughters. While the young man’s tough, street wise look wouldn’t merit him as a poster boy for Fatherhood. His loving, protective manner with his girls was, to say the very least, moving. As he began to turn towards me. I began to notice the tattoo on his forearm. Being that I had just been complaining how, if I had known twenty years ago that tattoos would become so common and flat out random. I might have never gotten any. And while I still can’t fake any interest when a friend asks me “Want to see my new tat?” I can certainly appreciate a good one when I see it.
Last week I dropped by unannounced on an old friend with nothing but a smile and a case of beer. It had been years since I last saw Gary, but the memories and appreciation for this old friend had never wained. I first met Gary when I was sixteen, maybe seventeen years old. At the time I had just met and had begun dating his daughter Casey. At the time I had already perfected the “Meet the Dad” thing and had developed quite the silver tongue. As I sat there in his living room. Gary popped the top on his can of Budweiser and the conversation began. As we spoke about our common interests such as Hockey, power tools and of course his daughter Casey. Gary leaned back in his chair and breathed in before saying “Listen James, I like you. You’ve got a good line of shit.” It was a strange moment. One that I remember vividly years later. The man was honest and forthright. A gritty, no holds barred kind of man. A union guy who got his hands dirty at work, just like my step dad. Since that day Casey and me remain trusted friends and I’ve kept in touch with Gary through family events and unannounced visits. Till this day, he’s still as honest and forthright. A hard worker who, despite retirement, keeps himself busy and his hands dirty. Years may pass without a visit, but he welcomes me every time with a smile and an offer to stay as long as I like. He reminds me that, as we get older we learn to appreciate the little things in life and cherish the people we invite into it. My appreciation for Gary, the way he welcomed me to the family in my teens and the way he still welcomes me in to his life and home goes a long way. As I get older, I’ve grown to appreciate these little moments and exchanges more and more. Whether it’s reaching out to a stranger or dropping in with a case of beer on an old friend. These little things can make a difference in someone’s day and even their life. It sure goes a long way to make my own better.