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.
After months of hard work trying to obtainn medical records and test results from hospitals in both New Jersey and Washington state. I was finally able to secure my appointments at the Mayo Clinic, book a hotel and flight to Rochester, Minnesota. It was a frustrating process that took months. A frustrating time where I often questioned whether or not I would be around long enough to to walk through the doors of the storied institution.
Due to the fact that my first appointment was at 7:30 am Tuesday morning. My wife and me flew in on Monday, which gave us an entire day to wander around and explore an area we had never been before.
Though I didn’t feel that going to the Mayo Clinic would help me find any new answers or a magical cure all for the progressing issues I’ve been experiencing. I arrived open minded, knowing that I would be seeing the very best doctors and getting the kind of concentrated care I had never before experienced. I’d also be giving my wife the peace of mind she more than deserves.
From my first appointment on Tuesday morning. I felt as if I was experiencing a level of care like I had never before seen. The answers of my questions were addressed and answered with a a great deal of detail and explanation. Before my first appointment ended, the initial three I had scheduled had morphed to six and by the time the days second one was over, I had learned more about my condition in a few hours than I had in the two years since being diagnosed.
As the week wore on the amount of appointments, test and waiting began to wear me down both physically and emotionally. After a blood and urine test, an MRI and a CAT scan the doctors all agreed that the calcification my my brain was creating my balance and speech issues, but questioned whether or not a I had FAHRS. Though not concluded, it seems as if the radiation for a brain tumor I had as twelve year old might be the culprit. Where I had felt so positive during my first couple of days there. the last two days there left me with a much better understanding of my condition but so many more questions than I arrived with.
What’s most bittersweet about all this is I will be returning for another round of appointments and tests in late September. Not to be negative but, I sometimes with that the original diagnosis and death sentence I received (a month to live.) when I was twelve, would have come through. I, nor my family and loved ones, would have to experience and suffer from all the bullshit that followed. And while I’d describe my trip to the Mayo Clinic as very positive. I wish I’d be returning home with a more detailed and defined outline of things.
With another birthday and wedding anniversary in my rear view window and a trip to Rochester Minnesota ‘s Mayo Clinic just days away, I’ve still had plenty of time to reflect on life in general. The things and people that bring me the most joy. How my love for exploring and seeking out adventure and beauty in places that others might not tred. Despite age and an ever changing bag of bones. I still want to hop fences and climb trees. I still see “Do Not Enter” and “No Trespassing” signs as open invitations and warm welcomes to step inside and take a look. As the days grow closer to my trip and what I consider my final search for answers regarding my condition, I find that I’ve become calmer and more accepting of what’s been a progressive downhill when it comes to my symptoms. There are still many fences to hop and trees to climb . Though I might have to find new ways to do so, I’m more than up for the challenge.
Back in 2016 I went to the theater to see “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.
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.
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