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.
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