Despite my medical issues getting worse and struggling with the challenges of having a progressive neurological disorder. I still, very much, think and see like a photographer. What I lack in balance, I more than compensate with my drive and passion to, for a lack of a better term, “find the light.” and while the day and the light still have a place in my art. I’ve become much more fixated on finding light in the darkness. No matter the subject or the struggle it might present. I’ve learned that obstacles will never curb my enthusiasm to create or disable my drive to learn and grow. Here’s to experimentation and the results that may come. (I shot the on a tripod at 100 ISO at a ’30 second delay. The F stop was 22. The photographer was full with the joys of Thanksgiving Happy Holidays.
Somewhere between awareness of my symptoms and diagnosing them came knowledge and acceptance that things might get a lot worse before they ever or never get better. While a pretty hard pill to swallow, (No pun intended.) I feel lucky that I have such a fantastic support system in my wife, family, friends, and doctors. However, there is one thing in particular that has become harder and harder to accept as time goes by. That is, people always checking in on me and asking how I’m doing. Arguing with and fighting over her being too helpful or over-attentive. As time goes by, I feel myself becoming more resistant to help, while closing myself off to others. I also notice that it doesn’t take much to light my fuse or lose my temper. Whether it be snap reactions or just getting angry over things I can’t control, I’ve come to fear of becoming a cranky old son of a bitch than an optimistic one. As I move towards a new year and a new decade, I hope to move forward by taking somewhat of a step back to the practices I approached and learned from in the past. Simple things, such as meditation, breathing techniques, eating, and exercise, could all help while bringing improvements to my attitude, as well as my life. Hopefully, these little things can help in bringing me the peace of mind and mindfulness I so desperately seek.
When we originally came to Rochester, Minnesota’s Mayo clinic in late July, my initial three appointments quickly grew to nine and even after that, I still had a couple more that I had to postpone in order to catch my scheduled flight home. And while my initial trip gave me a lot of answers regarding a myriad of health issues. It brought up new one’s that I, myself may not have been able to answer. Still, I knew I was getting the best care ever and the doctors and nurses I saw looked deeper than anyone else had ever done when it came to my medical history.Shortly after returning home to Seattle, a second, or follow up trip was scheduled and booked. With an understanding that my two new appointments could easily multiply and stretch out into a week, we booked our hotel for an entire week. Strangely enough, our first appointment with a neurology specialist took me aback by concluding that any and all issues I’ve been experiencing in the past years were caused by the radiation I received when I was twelve. The same treatment that was given to save my life has been the cause of just about every issue I’ve had since. Not the answer I was hoping for, but one I can’t say was very surprising. After a quick blood and urine test, I was off to my second appointment with a neurosurgeon who looked as if he just came from the cutting room. By then, I had already been diagnosed and endured one of the longsst doctor visis of my adult life. So, we were both kind of phoning it in.
Still, we had five full days to explore an area we have gotten to know and love in a very short time. Later that week, we left knowing the cause of my issues while having the best Fried Chicken we have ever enjoyed at The Post and the tastiest Deluxe Cheeseburger at Forager Brewery. While I’m not exactly looking forward to what will come my way as far as my symptoms go. I’m grateful to have some answers and ecstatic over not having to receipt my full name and date of birth every time I approach a front desk or get called in for my appointment. I’m also grateful for not having to go over my medical history again for at least a year. Maybe the next time they ask, I’ll say “You’re the fucking doctor. You got that shit right in front of you.” Until then.
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.
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.
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.
Below are a couple of helpful links.
As I sat in the neurologist’s office going over recent tests we hoped would shed some light on my worsening speech patterns and balance issues, I tried to control my emotions as I felt myself choking up. As he shared the results and his conclusive diagnosis. I found myself struggling to hold back the tears and the snot bubble that was massing in my right nostril, Suddenly, as I felt my wife’s hand tighten on mine. I turned to her lovingly only to notice the tears rolling down her cheek.
The answers we had been hoping for were not there. This was a month that featured X-Rays on my shunt. An MRI and CAT Scan on my brain and enough blood work to make a vampire foam at the mouth. It turned out that my symptoms had nothing to do with a recently discovered meningioma brain tumor residing on the opposite side of the brain where my original pineal tumor (The one doctors deemed as terminal. Giving me a month to live at the ripe age of twelve.) had remained or my 2008 stroke that was brought on by a build up from the radiation I originally received to shrink said tumor. Issues that could be easily understood, treated and easily removed.
Instead, what they found was a rare, often genetic neurological disorder known as FAhr’s Syndrome. A disorder that has no cure or standard treatment. One that progresses over time, but won’t kill you. After the doctor went over each test with visual descriptions, he turned to us and said, “I wish I had better news for you.” A term which is easily translated to “Sorry, but you’re fucked.” Having amassed a stockpile of sarcasm and dark humor over the years, I asked, “If I drop you a few extra dollars for your next trip to the local strip club, would you prescribe a toxic cocktail that can put an end to my misery?” Instead of agreeing to my request, I was referred to physical and speech therapists. Complete with a follow up date and the name/number of a social worker.I was all but dismissed. The worst part of it all, at least for me, was seeing my wife cry. We’ve been through a lot together (My 2002 shunt replacement, 2008 stroke, my struggles and sleepless nights due to an ongoing struggle with Gastroesophageal reflux disease as well as my numerous trips to the Emergency Room.) and she’s been at my side during every bump in the road. She’s a loving, supporting and very strong woman. Yet, I’ve only seen her cry twice in all our years together. Both being times when I was hospitalized or being diagnosed with some kind of bullshit.
While it’s hard for me to properly articulate what I’m about to say. Life has taught me that there’s nothing I can’t handle. I’ve seen a lot and I’ve been through more. We are all a lot stronger than we ever give ourselves credit for. Though in my case, hearing stories from friends and loved ones who were around to witness some of the things I went through was more than I could take. More than I would ever want to burden anyone with. I don’t know if I ever told anybody this, but I often feel a tremendous sense of guilt for what I put them through. In getting the news of the next gift from God. I finally shared my thoughts of how I wished the original 10/11/1982 diagnosis of “I’m sorry, but there’s nothing we can do. Your son will most likely be dead within the month.” Would have been fulfilled. Because, somehow, their saving me led to a lifetime of related bullshit that I couldn’t shield the people I loved from.
While my rant was not received well by family, friends, or my doctor. It was something I had been feeling and wanted to be honest about. In retrospect. I’ve lived a charmed life. One that’s granted me love, happiness and enough positive experiences to look look forward to and back on for years to come. All the negatives are just bumps along an otherwise smooth road.