I’ve quickly found myself becoming an angry old man. You know, the kid of one who shakes his fist at the clouds and yells at kids to get off his lawn. Considering I was an angry kid and an angry adult, this should come as no surprise to me or anyone who’s been lucky enough to know me for a while. Still, maybe for the first time in my life, I find myself attempting to relearn how to think and go about my life without judging others and perhaps be a tad less harder on myself.
Forgiveness and closure are powerful tools that have brought me more peace than I could have ever wished for. While I’m still learning and trying new ways to balance life. Having overall lower exceptions when it comes to myself and others has been a game changer. I still struggle to find that balance and overall acceptance that, no matter how much I wish it, we do not live in a perfect world.
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.
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.