With another birthday and wedding anniversary in my rear view window and a trip to Rochester Minnesota ‘s Mayo Clinic just days away, I’ve still had plenty of time to reflect on life in general. The things and people that bring me the most joy. How my love for exploring and seeking out adventure and beauty in places that others might not tred. Despite age and an ever changing bag of bones. I still want to hop fences and climb trees. I still see “Do Not Enter” and “No Trespassing” signs as open invitations and warm welcomes to step inside and take a look. As the days grow closer to my trip and what I consider my final search for answers regarding my condition, I find that I’ve become calmer and more accepting of what’s been a progressive downhill when it comes to my symptoms. There are still many fences to hop and trees to climb . Though I might have to find new ways to do so, I’m more than up for the challenge.
A few years back during a visit to my gastroenterologist, he told me that he was just sharing with his secretary how inspired he was by me and my ability to bounce back from each medical setback, emerging stronger and a bit more wiser. Being that I had been seeing him for an entirely different set of challenges for close tot fifteen years, he had seen me move from one health setback to another. While I was taken aside and visibly humbled by his words, all I could come up with was some gibberish about how, after all these years of fighting, I was tired and I wasn’t to sure I wanted to fight anymore. Note that this was a few years prior to my latest discovery of another brain tumor and being diagnosed with a neurological disorder that has no cure or known treatment.
Still, to this day, I find myself fighting and adjusting to meet new challenges. Truth is, we’re all a lot stronger than we’ll ever give don’t give ourselves credit for. No matter what a person, or doctor tells you. It can’t override your desire, strength or determination to make the most out of what you have.To be happy with what you do have or can do and not to be preoccupied with the things you don’t.
Just for the hell of it. I decided to revisit twelve year old me and rewrite the article I mentioned in my last post “Unfinished Business” What I wrote below was taken from the school newspaper article I mentioned, a journal I kept at the time as well as memories that still remain fresh all these years later.
Several weeks ago, I began experiencing severe headaches. It all started during school hours and became such a distraction that I was often excused to go down to the Principals office to request they call home to have someone pick up and take me home. Being that I’ve built somewhat of a reputation as a trouble maker. I was initially scolded and told to stop slacking off and get my ass back to class. Days passed and as the headaches became more sever, my trips to the principals office increased. Despite all of the warning signs, health concerns took a back seat and I was sent to see a school shrink. I was asked questions like “Is there anything or anyone bothering you?” “Is everything okay at home?” You know, text book questions one would ask. “No, man. I’m just experiencing crippling headaches. Can I go home now?”
Within a couple of days I was in a doctors office. His assertion was I had been experiencing intense migraine headaches. Something that could easily be tamed by medication, which he described. In the days that followed, my condition worsened, I wasn’t making it to school and due to my parents conflicting work schedules. I was staying with my grandmother. By then. I was not capable of eating and could not handle any light, whatsoever. I vividly recall the overpowering light that emanated from my grandmothers 12′ inch B&W TV being more than my eyes could take. Quickly, (I’m talking about a matter of days.) I began hallucinating. (Here was this kid who sucked at fifth grade Math hallucinating ratios most kids don’t know of until grad school,) That’s when I remember being taken to the emergency room.
Upon arrival, I remember being taken in pretty quickly. (No three hour wait to have his temperature taken, given a few aspirin before being sent home with a bill resembling a school loan for this kid.) A CAT scan taken that night revealed a rather large pineal tumor on the middle of my brain. From there I was quickly admitted to the hospital where I had emergency surgery that was meant to keep me alive. Though I was not told at the time, my parents were gently told to make funeral arrangements. The date was October 11th and by all projections, I would be dead before I got to enjoy Thanksgiving dinner….
To be continued…or not.
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
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.
American Meditation Society