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 we were driving in the pouring rain. I turned to my wife and asked if she preferred the year round rain of Seattle or the often bone chilling winters we got used to experiencing during our many years on the east coast. While I was almost certain of her answer. I was somewhat surprised by the break neck speed in which she answered. Considering the amount of time she spends complaining about the constant rain one has to get used to when living here. I can imagine her daydreaming about the bone chilling cold we endured while experiencing Christmas in Boston a few years ago.
xBeing that we’ve had to abort a Christmas visit to Portland Oregon and detour today’s drive to Olympia Washington today. I can relate to her frustration. Luckily, we decided to shorten today’s trip before it really started. Deciding to cut it somewhat short while filling up our gas tank at the local Costco. Though the rain would follow us on our reshaped visit to Tacoma. By the time we reached Broadway’s antique row, that rain seemed to dissipate to a few drops. I recall my wife commenting on how it was still raining as I began to retrieve my camera from the cars trunk. Just as I closed the trunk, the sky opened and began to pour rain down on my head as if the Gods were planning all along to exact revenge on me for all my recent fist shaking and thoughts of eternal damnation. Regardless of the weather or any vengeful acts by the Gods that be. We both love traveling and visiting Tacoma. We’ve promised to return under less threatening skies. Until then.
Before moving on to our final destination in Tacoma. We made a stop at Gig Harbor for breakfast at Devoted Kiss for some breakfast before taking a short break to explore the towns shops and adjacent harbor. We haven’t had a chance to visit Tacoma or Gig Harbor since Summer and were eager to experience the area as it fully embraced the holiday season. Overall, Gig Harbor has a nice small town feel and appeal. I can’t say enough about the service, hospitality and food Devoted Kiss served up. I’m sure there will be no hesitation to stop in the next time we find ourselves in the area.
My first night and post surgery at the hospital was terrifying to say the very least. Having my vital signs checked every hour on the hour throughout the night left little to no time for sleep. To make matters worse, I was in constant pain and felt a an enormous amount of discomfort due to the restraints of being hooked up to tubes and plugged into an intravenous.
I’ve found the doctors and nurses here to be very patient and understanding. Their heartfelt dedication to making the kids here as comfortable as possible can not be overlooked. Although I’m just another scared kid in here. I feel that just about everything has been explained to me in a way I can understand without sounding the least bit condescending. Something I greatly appreciate. Especially considering how scary this has all been.
My second day here had a specialist they flew in from Canada (I feel so important.) perform what he described as “Plumbing on the brain.” Being that the tumor is so large and cannot be removed. They instead inserted a shunt, which would be best described as a giant straw that sucks the juices from the tumor and flushes them through and out of my abdominal cavity. (Swoosh!) They only shaved one side of my head for the operation and though my grandmother suggested a comb over. My mother insisted that the other side be cut or shaved. I look like a fucking bowling ball now.
After some recovery time, I had my intravenous taken out which allowed me to explore the floor, it’s unit and some of the unique characters I’ll be spending my time here with. More about them later, as they each deserve further, detail and description. The food here, as imagined, is awful. If you came here healthy and ate the food. You’d most likely leave on a stretcher. The meals are scheduled and depending on what you’re here for. Are planned and chosen for you. Due to the fact that a brain tumor doesn’t call for any strict diet. I tend to choose the hamburgers that closely resemble and taste like hockey pucks. (Not that I’ve made it a habit to feast on hockey pucks in the past.) Luckily, whenever someone plans to visit and asks if I need anything. I answer convincingly with “Kentucky Fried Chicken, McDonalds” or any other fast food franchise within blocks of the hospital. Whatever medication they’re giving me is making me very hungry.
(Stay tuned for parts IV and V) Coming Soon.
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.
My wife and I recently deiced to take one weekend day (usually Sunday) to stay somewhat local and dedicate part of the day to study,. (Or in my case, write.) Over time it’s come to be a ritual I enjoy and even look forward to. Going out for breakfast before seeking out a library, book store or cafe/coffee house to settle in and get some extra work done. Being that I’ve always been and still am inspired by photography. I often find myself thinking as one and wanting to capture a moment. Since moving to Seattle I’ve taken my share of sunsets but often miss the industrial surroundings of the Jersey City condo we so cherished. Finding ourselves at a SODO coffee shop late this afternoon. I was able to patiently wait in my comfortable seat as the sun began to set over the areas industrial backdrop. As the Fall quickly becomes Winter and the days get shorter. My chances to watch the sun disappear will multiply. Still, watching sun set and that glowing orange color overpowering a once blue sky incites child like awe.
We were just finishing up our breakfast at a local Denny’s when I saw what would have made for a cool image. Not wanting to seem intrusive, I took a quick shot as we headed towards the exit with the intention of doing whatever editing was needed later. Just a couple of hours later as I was enjoying a cup of coffee with my wife. As I sat there enjoying my cup of joe and admiring a pretty cool capture. My wife burst my bubble by sharing a very similar image featured on the cover Seasick Steve’s “Can You Cook?” Though I had never heard of the artist or seen the relatively new album. I couldn’t help but feel that the rug had been pulled out from me I even wondered aloud if the picture was taken at the same location. And while I’ll stop short of posting the album cover. I’ll readily admit that my love of this image took a major nose dive after seeing something so incredibly similar. Oh well.