Back in 2016 I went to the theater to “Snowden”. The true story of an NSA agent who reveals illegal surveillance techniques used by our government to spy on its own citizens. There are a couple of scenes in the movie where the character suffers from seizures that had
him writhing uncontrollably on the floor. As someone who suffered from a serious seizure disorder from the age of eighteen to about twenty four. Those scenes freaked me the fuck out. So much so, that I could feel myself unexpectedly welling up with tears and feeling overwhelmed. You see, though I have experienced having seizures myself, countless times over. I had never seen one from the eye of the beholder. During the times people like my Father described the frightening scene that would unfold before them. My unresponsiveness and the sheer sense of helplessness that accompanies it. I completely roll up into a metaphorical ball of guilt and shame. Recalling how often I joked or made lite of my disorder and the challenges that came with them. Know what I put others through makes me want to take it all back.
Now, having a seizure disorder is nothing to joke about. Over the years I woke up many times with the taste of concrete or soil in my mouth. I had my share of trips to the emergency room and I can remember the crazy hallucinations that often accompanied them. Yet, over time I got to know the warning signs as well as the triggers. I learned enough to consistently question my doctors upon visits and do enough research of my own to learn that the medication/medications they were prescribing and insisted I’d have to take the rest of my life were not curtailing the frequency of my seizures while giving me a pack of side effects to add to my misery. Add to that the horror stories I reading in the medical journals my Father just happened to have lying around. Through quick browsing I learned that the long term affects of the drugs were going to do more damage than good.
Upon informing my family and doctors I would be ending the endless cycle of medication and doctors visits. I was met with closed minds, disbelief and a couple of dozen cases of “But, James.” Still, I went forward with my plans to take a more holistic approach. Seizures followed, but for once, I was taking responsibility for what was happening to me. I made changes to my diet and every day habits and before you knew it. I went from having up to three seizures a day to going years without them. No more Epilepsy Society, no more medication, no more visits to the doctor or even worse, the ER.
I’d feel remiss and somewhat irresponsible for not adding that my decisions and choices were mine and mine alone. Everyone’s case is different and no one in their right mind should refuse treatment. My story and road to recovery is mine alone. As painful as it might have been for me. I feel as if seeing something so jarring from a different viewpoint was an education, of sorts. I think it’s somewhat universal that seeing or experiencing both sides of the coin gives you better insight into the situation. I know it did for me.
Truth be told, if it weren’t for the constant call of family back east. I might just stay in Washington state a bit longer. Having lived in New York and New Jersey my entire life. I feel very lucky to have been given the opportunity to move to and live out west. And while it’s long ago been decided that we’ll soon return to either New York or New Jersey. I can’t help but wonder, what if?
Though my wife has reiterated that we, indeed, will return to that area. She, perhaps unknowingly, sends me mixed singles when I catch her looking online at lofts and condos in Portland. OR. It’s something I’ve become used to and I fully realize that she is either playfully curious or just doing it to break my balls. Maybe that’s why I’ve learned to take it all in stride and play along. Maybe that’s why I didn’t even blink an eye when leaving Olympia today and I was asked the question, “If we decided to stay in Washington and the choice
came down to living in Tacoma or Olympia. Which would you choose?” Before responding, I took a few seconds to think, choose and properly explain my choice. As a husband, you get used to being asked questions all day. So being able to quickly answer one and have enough facts and data to back it up might make you seem a lot smarter. Though delaying your answer can help give you breathing room and slightly delay the next life shattering inquiry. Which in my case usually has something to do with my hatred of Led Zeppelin, Bon Jovi or Aerosmith.
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.
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.
Just for the hell of it. I decided to revisit twelve year old me and rewrite the article I mentioned in my last post “Unfinished Business” What I wrote below was taken from the school newspaper article I mentioned, a journal I kept at the time as well as memories that still remain fresh all these years later.
Several weeks ago, I began experiencing severe headaches. It all started during school hours and became such a distraction that I was often excused to go down to the Principals office to request they call home to have someone pick up and take me home. Being that I’ve built somewhat of a reputation as a trouble maker. I was initially scolded and told to stop slacking off and get my ass back to class. Days passed and as the headaches became more sever, my trips to the principals office increased. Despite all of the warning signs, health concerns took a back seat and I was sent to see a school shrink. I was asked questions like “Is there anything or anyone bothering you?” “Is everything okay at home?” You know, text book questions one would ask. “No, man. I’m just experiencing crippling headaches. Can I go home now?”
Within a couple of days I was in a doctors office. His assertion was I had been experiencing intense migraine headaches. Something that could easily be tamed by medication, which he described. In the days that followed, my condition worsened, I wasn’t making it to school and due to my parents conflicting work schedules. I was staying with my grandmother. By then. I was not capable of eating and could not handle any light, whatsoever. I vividly recall the overpowering light that emanated from my grandmothers 12′ inch B&W TV being more than my eyes could take. Quickly, (I’m talking about a matter of days.) I began hallucinating. (Here was this kid who sucked at fifth grade Math hallucinating ratios most kids don’t know of until grad school,) That’s when I remember being taken to the emergency room.
Upon arrival, I remember being taken in pretty quickly. (No three hour wait to have his temperature taken, given a few aspirin before being sent home with a bill resembling a school loan for this kid.) A CAT scan taken that night revealed a rather large pineal tumor on the middle of my brain. From there I was quickly admitted to the hospital where I had emergency surgery that was meant to keep me alive. Though I was not told at the time, my parents were gently told to make funeral arrangements. The date was October 11th and by all projections, I would be dead before I got to enjoy Thanksgiving dinner….
To be continued…or not.
As I was going through a couple of file boxes containing old tax returns and medical records. I came across a copy of the school newspaper that featured the article they asked me to write about my experiences and observations of my days, weeks and months as a terminal inpatient at an uptown Manhattan hospital.
Though I was unaware that the school even had a student based newspaper at the time. I agreed and proceeded to pour my heart out about the most trying and challenging experience I had been through in my somewhat short life. After penning and handing it off to visiting teacher. It was delivered to the forces that be and sent to the newspapers staff to be printed and distributed.
Imagine my shock when upon delivery when I realized that my words were not only edited, but rewritten to fit in with the dogma our schools faculty were forced to teach.
While I’m pretty sure my 7th grade English could benefit from a little grammarly love. But having what was being interpreted as my own words, twisted and fabricated to describe my recovery as a result of prayer, faith and God’s mercy. It would seem or be suggested that my becoming ill was part of God’s will to make me a stronger, better Christian. An act on their part was a fabrication and flat out lie. I had no idea the sisters, priests or clergy would go as far as committing libel to spread their message of fear, control and suppression of free speech or thought. While it wasn’t the first time the school or church committed one of the many sins they instructed us to abstain from and swiftly punished us for acting out. It found their avenue of doing so, rather tasteless.
Looking back, it’s hard to remember exactly why I didn’t take my case up with the schools principle, Sister Mary Patrick, or even threaten to take them to court. Maybe it had something to do with the fear of retribution on the schools part. Perhaps being just twelve years old trying to survive a terminal prognosis brought on by a non operable brain tumor. I don’t know why such a predictable action on the part of those put in charge of indoctrinating so many young minds to believe in half truths, fairy tales and flat out lies would warrant one’s anger, but it did.
I was having a conversation with my physical therapist when the topic of camping came up. She was utterly shocked by the fact that I had never spent a weekend or even a night in a tent with the glow of a warm fire just a few feet away. Growing up in Queens, New York. There were always adventures to be had. Playing inside and on construction sites, fumbling through cemeteries at night and trespassing in general. Not to mention the bus trips to the Bronx Zoo where we could catch a glimpse of the burnt out buildings and the areas crack heads and window washers. who begged for money outside of the tunnels or where the bridges dispatched cars, trucks and buses throughout Manhattan.
It wasn’t until my early twenties that I began traveling extensively, skydiving, white water rafting and cliff diving. Still, there was always the opportunity to return home to a hotel or hostel at the end of the day. No disrespect to campers, tents, sleeping bags and roasting marshmallows by the campfire. Each and every one of those mentioned would be super cool. But I slept off a night of heaving drinking and hardcore in Central Park in my teens and I think my fear of being murdered by an axe or machete wielding maniac trumps that of a mugger in the park. Years, no decades later. I have a hard enough time getting my wife to join me game of Wiffle ball or Frisbee. I don’t think my chances of getting her to go camping with me are much better. People change, so who knows. Maybe my time will come.