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.
In moving to Seattle, Washington from Jersey City, New Jersey. I had some fear that much of the toxicity that had become a part of my daily life for so long would follow me out west and cast a negative cloud on whatever changes I was hoping to undergo. Despite a rather grim diagnosis just months after arriving in the great northwest. I’ve manged to maintain a decidedly positive outlook. Now, by no means does change come easy. Everyone is different and their isn’t a one fix fits all remedy out there that I’ve seen or heard of.
Since being diagnosed with a chronic illness. I went through a number of emotions that included depression, anger and self blame.. Throughout, my one constant has been trying to define what truly makes me happy while sustaining a balance that can nourish and fulfill my soul. The more I’ve searched. The more I come to realize how much the little things play a major part. When listing my favorite things, music, photography and maintaining a level or creativity on a daily basis are the first things that come to mind. However, the more I search the more I’ve come to understand how much joy comes from sharing or preparing a meal with my wife, traveling and sending silly texts to my younger brother.
As we get older our priorities change as often do the things that attract our interest and show up on our shelves. The solitude and alone time I often seek and have learned to enjoy, only improve my ability to socialize. Training myself to limit the people I let into my life and not getting caught up with too much bullshit has helped tremendously in cutting down on stress, anxiety and many of the ingredients of my once toxic personality and lifestyle. While my posts do get there share of likes these days. I would love to see some of your strategies, techniques and practices for dealing with stressful situations and day to day anxiety.
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.
When I called my Mother this morning. In a somewhat puzzled state of mind, She asked me for my address. Being that I’ve told her countless times before and included it with the cards, letters and various mail related items I’ve sent her. I was puzzled as to why she was asking me again. “I your address &#$^@?” she asked.”Yes, that is my address.” “Well, I’m so pissed. The post office returned my package.” I knew the reason before she could even speak. As this has happened several times since my wife and me moved to Seattle. “Did you include the apartment number?” The one I’ve instructed you to always include?” “No, don’t they know you live there by now?” Now, I recall reminding her to do so more than a half a dozen times now, to no avail. However, my dismay or anger had nothing to do with her forgetting mildly important things.
My anger stems from the fact that I started insisting she stop sending me these packages back in 1994. Again, to no avail. Now,when you think about it. That’s almost twenty five years of unwanted, unsolicited packages. Items she’s purchased at places like K-Mart, Wall-Mart and other big box stores I myself, refuse to enter. knowing full well that any chosen package will contain items I will either have to throw out, pass on to someone who most likely think I’m nuts, or find room to store. Each box, envelope or package sent includes a unintentional amount of anxiety. The kind that comes with having things you don’t want or need thrust upon you. Not to mention, the inevitable phone call asking, “Did you get it?” “What did you think?” In the end, I don’t want to be surrounded by things I don’t need or one’s I can’t get rid of without the guilt associated with discarding items gifted by loved one.
Having seen my share of iPhone and Samsung commercial spots talking up the wonderful images you can create with their new technology and reading various articles predicting the beginning of the end of SLR’s as we know them. I’m somewhat surprised by how well I was responding and reacting. After hearing “Do you think you can set up a studio in this room? Or “Do you think all your photo gear will fit in this closet?” during our years trying to buy a condo. That and the fact that I’m holding on to a dozen or so film cameras. I found myself feeling more relieved than stressed.
And why not? How often have we wished for a magic wand to clear away all the clutter and extra stuff that takes up our closets, our shelves, floors, the space under our beds. Forcing us to foolishly rent storage space and make hard decisions about what stays or goes. Though I haven’t gotten into the disease / disorder that, as it progresses, wrecks havoc on my balance and ability to walk. The practice of carrying around a camera back full of gear is becoming a major issue. What if all of that could fit in the back of my pocket? Times change and the media we use to create art changes with it. I clearly remember the resistance I had when switch from film SLR’s to Digital. And though I put up a good fight. I was and still am feeling the rewards. More and more these days I’m reserving my camera, the myriad of lenses and my add on flash for more demanding moments. While keeping my iPhone handy for when my wife texts me or I see something like what I’ve posted above to capture for future consideration.
I love Seattle, living in Columbia City, our apartment, our neighbors and living within spitting distance of Columbia Park, the Public Library and Seattle Lake. Each of which I don’t take for granted, but don’t take advantage of nearly as much as I should. As I’ve grown to understand and embrace the importance of time, how it’s spent and how to make the most of what we have. I’m finding more focus and a new found ability to properly manage it. As someone who’s dealt with anxiety, panic attacks and depression over the years. I’ve done more than my share of worrying and overthinking. Thankfully though, I’ve learned and I’m still learning how to manage if not control my thoughts. Putting things in perspective, as opposed to letting them build up and let them effect me in a negative way. I feel that in changing my environment, I became more open to shifting the way I see things. Something I see as a major positive. The pictures below were taken over the weekend at nearby Lake Washington.
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.