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.
In moving to Seattle, Washington from Jersey City, New Jersey. I had some fear that much of the toxicity that had become a part of my daily life for so long would follow me out west and cast a negative cloud on whatever changes I was hoping to undergo. Despite a rather grim diagnosis just months after arriving in the great northwest. I’ve manged to maintain a decidedly positive outlook. Now, by no means does change come easy. Everyone is different and their isn’t a one fix fits all remedy out there that I’ve seen or heard of.
Since being diagnosed with a chronic illness. I went through a number of emotions that included depression, anger and self blame.. Throughout, my one constant has been trying to define what truly makes me happy while sustaining a balance that can nourish and fulfill my soul. The more I’ve searched. The more I come to realize how much the little things play a major part. When listing my favorite things, music, photography and maintaining a level or creativity on a daily basis are the first things that come to mind. However, the more I search the more I’ve come to understand how much joy comes from sharing or preparing a meal with my wife, traveling and sending silly texts to my younger brother.
As we get older our priorities change as often do the things that attract our interest and show up on our shelves. The solitude and alone time I often seek and have learned to enjoy, only improve my ability to socialize. Training myself to limit the people I let into my life and not getting caught up with too much bullshit has helped tremendously in cutting down on stress, anxiety and many of the ingredients of my once toxic personality and lifestyle. While my posts do get there share of likes these days. I would love to see some of your strategies, techniques and practices for dealing with stressful situations and day to day anxiety.
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
For years now, I’ve tried to make meditation a part of my every day life. Quickly, I moved from one of those people who thought “How can I possibly find the time in my busy schedule?” to “How can I not?” Since my early attempts, I’ve used basic breathing techniques to conquer panic attacks, anxiety and overthinking while cultivating a sense of peace and mindfulness I never imagined possible.
Earlier today, as we boarded the Ferry from Bainbridge Island to downtown Seattle. I found the perfect opportunity to meditate. With nothing but the sound of waves crashing alongside the boat, the subtle breeze wafting through the car window and the gentle rocking of the car due to the ferry’s pushing it’s way across Elliot Bay. I found myself removed from the thoughts of the days, weeks and months that have crowded my head and battled for space and permanence in mind. The feeling was of warmth and peace. I became so completely calm and at ease. That I hardly noticed the ferry attaching itself to the dock. As I heard the announcement of our arrival over the loudspeaker. I nodded over to my wife to notice that she too had fallen into the spell. She sleepily asked, “When we could do it again?” I was quick to reply, “As soon as we can.” as we headed home from our day’s trip.
The more I learn about and inevitably embrace meditation. The more I want my friends and loved ones to join me. The most important thing I’ve learned in all this is that you really don’t need a special room, place, pillow or chant to enjoy it’s many benefits. All you need is a few minutes to allow yourself to check out and unplug. I highly recommend it.
I love Seattle, living in Columbia City, our apartment, our neighbors and living within spitting distance of Columbia Park, the Public Library and Seattle Lake. Each of which I don’t take for granted, but don’t take advantage of nearly as much as I should. As I’ve grown to understand and embrace the importance of time, how it’s spent and how to make the most of what we have. I’m finding more focus and a new found ability to properly manage it. As someone who’s dealt with anxiety, panic attacks and depression over the years. I’ve done more than my share of worrying and overthinking. Thankfully though, I’ve learned and I’m still learning how to manage if not control my thoughts. Putting things in perspective, as opposed to letting them build up and let them effect me in a negative way. I feel that in changing my environment, I became more open to shifting the way I see things. Something I see as a major positive. The pictures below were taken over the weekend at nearby Lake Washington.
Last week I had a representative from a local painting company over to get an estimate on our loft foyer area. In the hour or so he was here, we went over ideas about color schemes, wallpaper removal and the stripping of a concrete column located at the left end of the room. It was apparent that the company had worked in the building in the past. As he began to leave, he asked curiously about the extensive damage in the lobby and common areas. I took my time explaining how the pipes had frozen causing a flood while putting the building on an all day fire alert. I told him about the alarm and sirens that wailed for hours and how the inescapable flashing lights in the loft and hallways triggered my first seizure in years. He stood there in a frozen state, captured by my story, asking questions along the way. I had no intention of keeping him longer than I had. Nor did I have any motive in sharing my history with seizures. It wasn’t until he told me about his beautiful sister’s long history with grand mal seizures and depression that I did. He told me how witnessing his sisters seizures unfold as a young teen terrified him. How, to this day, those memories still haunt him.
I shared my experiences with him on how I eventually got off the medication roller coaster after years of them adding miserable side effects to my somewhat manageable seizures. Taking more holistic path with diet and more spiritual approaches such as meditation. How both doctors and my own family were less than supportive of my choice. And ultimately, how I went from having three to five seizures a week to about a half dozen in the twenty years since.
As for depression, while I have yet to find any cure (Believe me, I’m no rocket scientist.) I told him that, in my own experience. Knowing that you are not, in any way, alone is key. It’s also important to understand that, no matter how I might feel at the moment. I’m always able to convince myself that I will most likely feel a lot better in a few hours, days or weeks later. My regiment depends on staying busy and creative whenever possible. Fresh air and even the most brief exchanges can change the course of a day. The smile on his face said it all and I think the amount of time he spent lingering in my doorway was more than enough evidence that even the smallest exchanges can change someone’s outlook on things. In closing, I can’t emphasize enough how important it is to share our experiences and history with one another. We are all connected to one another on one level or another. Large or small, every word we speak can go a long way while carrying a heavy load.