Me Myself, and MS

Category: Uncategorized

  • Mind Over Scatter: Adventures in Keeping it Together (Mostly).

    Welcome to my spiritual and journey into Multiple Sclerosis.  I love you and I hope you love me too.  The above affirmation will be my affirmations for the rest of the year. I never really bought into all this touchy feely, namaste stuff, but hey they’re like mental sticky notes to remind me how fabulous I am (or strive to be).  So before I answer the burning question of the day how the hell am I really doing.  I hope some of you are getting a kick out of reading my blog post. I wish you all could just peek into my world and see what it’s like living with MS. Spoiler alert: it’s not all sunshine and rainbows, but I’m here to spill the tea!  I would like to say that I know this post is a little late and over due.  

    So, how am I doing? Oh boy, what a loaded question! I get asked this all the time, and my answer is like a game of roulette—it changes based on who’s pulling the trigger! I might just say, “Do you genuinely want to know, or are you waiting for me to say I’m ‘just fine’?” And by “fine,” I mean F***ed-up, Insecure, Neurotic, and Emotional. Yep, that’s the gospel truth! Thank you Christina Applegate for giving me that saying. I have to chuckle when my boss, who is probably trying to channel his inner-life-coach, asks me how I’m doing. Let me break it down: I’m in pain and tired something you or anyone else can only imagine while you on a beach somewhere.   Sometimes I get asked “Working from home?” Now that would be a dream! But for now, I’m strutting into the office like a trooper, showing up for eight hours of fun.  While looking like a Latin version of Xavier from X-Men.  And for anyone thinking I should chat with HR about accommodations—dear reader I’ve been there, done that, and got the t-shirt that says, “HR: Hilarious Refusal.” Seriously, the whole diversity and inclusion thing at my workplace? Let’s just say, it’s more of a myth than unicorns! I could go on, but let’s be real nobody wants to hear about your problems when they’re busy with their own B.S.

    I’m Chilly Chill with the Wheels

    Now let’s pivot—I’m mentally cruising along quite nicely. I’d give myself an 8.5 out of 10, which is a huge win considering the surrounding chaos! I hate election time, I’ll leave it at that.  Again my mental health has been riding high for quite some time. Sure, I might not be living in the dreamland I pictured as a kid, but I’m here, playing my part on this cosmic stage called life. When I start to feel like an imposter on my journey, I’ve got my secret weapons to keep me grounded.  Whether it’s deep-breathing, meditation, video games, reading or just watching some dam TV in my living room.  I am human underneath my humor, anxiety, depression, and Stress.  That word stress, that ever present feeling we all know too well, is like that neighbor who never quite leaves but sometimes brings cookies. It’s never fully gone, but I’ve leaned into it and say, “Alright, what’s bothering you this time Jon?”  Yeah I talk to myself, but I don’t answer my own questions hahha.  You see, I’m no different from most folks. I mean, who isn’t stressed about something? I always say if you’re alive and moving, you’re bound to bump into a little stress here and there. Sometimes stress masquerades as its moodier cousin, depression. I can hear signs of depression in my voice when I chat every week with my psychiatrist. She asks, “How have you been since last week?” I want to say, “Not depressed… well, maybe just a smidge.” Because really, who would be totally okay with losing a part of themselves that they can never get back? I will never be the guy I was in the early 2000s, and that’s something. It’s like I’m in this perpetual state of grieving for my old self. There’s anger, sadness, and a sprinkle of melancholy about my multiple sclerosis, this uninvited guest that just won’t leave the party. But every day I choose not to throw myself a pity party. When I feel myself sinking a little, I try to figure out what my soul needs. It’s like a spiritual detective game. What will make my spirit do a little happy dance? And no, the answer isn’t always food although a Sunday brunch or a dinner in Williamsburg or Long Island never hurts. So, what do I do instead? I step outside when I can, soaking in the fresh air, as long as the universe isn’t cranking up the heat to “fry an egg on the sidewalk” levels. A good movie at the theater with my family? Yes, please. Or maybe a little gaming session with whatever my favorite video game of the month is. It’s about finding those little pockets of joy, those moments where I can let my soul breathe and remember that, even with all the stress, life has these beautiful, quirky moments that make it all worth it. Even when I fall to the floor and hurt myself, there is a moment of humor and a weird knowing.  Listen up reader life is a wild ride, and I’m just strapped in, ready for the next twist and turn!

    For almost two years since diagnosis’s there is one thing I find myself nodding along with when doctors and professionals talk about Multiple Sclerosis (MS), it’s that it can bring anxiety and depression along for the ride. The anxiety part? Oh, that one really hits home for me. The uncertainty of it all is like having a suspense thriller play out in your body. I cannot help but think maybe I’ll lose my vision today, or maybe the feeling in my arm or leg will just decide to take a vacation. Maybe I’ll get those tremors and won’t be able to play video games—now that’s a tragedy of epic proportions. Or perhaps Zeus himself will decide to throw a lightning bolt my way, and I’ll get that electrifying jolt in my neck or arm. It’s like playing an unpredictable game of MS roulette, wondering which symptom is going to pop up next. I’ve heard stories from other MS warriors who have these electrifying encounters, pun intended.  Let me just say having your central nervous system on the fritz is like your body’s version of a bad Wi-Fi connection. Put that in your perspective when you want to know how it feels like having MS, I did have a few cases of Zeus’s wrath, and it’s not something you’d ever get used to. I just hope this doesn’t turn into a daily occurrence. Thank GOD they are far and few right now.  For those of you without MS who might have felt this lightning effect in the past—don’t worry, it’s not MS; it’s just your body’s way of giving you a little taste of the MS experience. Lucky you! This whole unpredictability thing leaves me anxious about the endless possibilities of what new symptoms I might have next.. It’s like life is playing a game of “What might Go Wrong?” And trust me, these symptoms would make things more challenging for this already challenged person.  Even a simple cold can exaggerate my current symptoms. And wouldn’t you know it, as I write this, I’m actually fighting something now. It’s been a rough four days. Dammit, all I want to do is sit here, relax, and maybe take a nap. Is that too much to ask? But hey, that’s the MS life. It’s all about coping, to laugh at the absurdity of it all, and to keep moving forward, one day at a time. And maybe, just maybe, find a little humor in the chaos.

    Sun gazing

    Not to sound like a broken record. But again how do I deal with this sickness everyday.   Well it isn’t easy but I smoke Crack and Sniff Crystal Meth.  Ah-haaa ah-haaa…. I am joking.  I can’t afford crack.  But seriously how do I manage.  Like I mentioned earlier:   

    • For one I listen to my neurologist doctor.  She is the best doctor in the world.
    • I listen to my wife.  She knows me better than anyone and when she wants me to do something I get on it.
    • I  do meditate like I said before, once or twice a day . It helps to identify daily emotions, and be aware of  uncomfortable feelings or MS sensations .  Almost like being comfortable with the uncomfortable.
    • I distract myself by doing something  like reading, video gaming, podcast ( which I haven’t done in a while), and I blog.
    • I hate to say this and be so transparent, but this one thing serves as both a medicine for my condition and a distraction.  I smoke a little bit of weed. Every other day, okay maybe everyday,   BUT the weed helps.  It gets me out of my head and also helps with some pain relief.  It isn’t a cure, and I don’t abuse it or disrespect this medicine.

    This has been one long post, but I promise you that we right near the end.  I am really conscientious about my exploration of using weed.  In fact I wanted to hide this from folks for the sake of not being judged.  So here I go trying to explain myself like a 16 year old getting caught.  It isn’t easy to sit with the “dis-ease” that your body is feeling. I know, sounds like a spiritual cliché, but when I’m in discomfort and meditating, it just makes me hyper-aware that, yes, I am very much alive and aware. Though sometimes, to get out of that mental loop of panic, and anxiety, I feel the need to smoke a little weed. And let me tell you, it helps. Weed has this magical way of helping me sleep and relax. With a little hint of I don’t give a f**k.  Don’t you worry, though—I’m not going to show up at your birthday party high like I just came from a Cypress Hill concert. Beyond that, I do see a therapist once a week like I mentioned earlier,  and it really helps me with tools to navigate the unwelcome stress and anxiety. I’m still not sold on the whole “you’re depressed” thing that my therapist keeps bringing up. I mean, I’m skeptical about it. I also see another therapist once a year who specializes in my condition as part of my yearly wellness program. Usually, I pass on this one because, hey I’ve already got one therapist in my corner. But the wellness program I am a part of also involves cognitive testing, puzzles and a walking tests—it’s like my annual tune-up for cars.

    Through all this sickness and the baggage it brings, I’m really trying to figure out today where the new me fits in this world. Since a young boy I have always felt a bit out of place which makes this slightly altered Jon feel intensely … becoming, no….befitting, no …. GOD I can’t find the right word, OH! “accepting” is the word.  I’ll get back to that in another blog post later.  But I had to stop clinging to the narrative of the old me. Some days I feel like I’m just an objective point of existence, and other times I’m simply Jonathan, a person trying not to get caught up in the this world’s duality of things. The current me comes with a few downgrades. Tasks take longer, my walk is slow and semi-steady, my mind is a slower in remembering.  Today I am just the guy who never knows what today will bring for him. I’m also the anxious one, like back when I used to on the front stoop in 1987, waiting for his dad to pick him up—a throwback to my childhood, and the boy from a broken home, but that’s a story for another time. Trust me, it’s a real tearjerker. But back to the present. I can’t undo my situation, but I can try to make it more comfortable and strive for some balance of health. It’s not about putting out of mind in what’s happened, but about finding a way to live within this new reality, to find a balance, and to carve out a space where this “new me” can feel like he belongs.

  • “Perception and Reality: How Our Inner Views Shape Our Suffering”

    Infusion Day

    Hello, dear readers! I love you and I hope you love me too. Today’s post is a heartfelt exploration of how our perception shapes our reality, especially when dealing with life’s challenges like Multiple Sclerosis (MS). Before diving in, I want to share a bit about why I named this blog “Me, Myself, and MS. I assure you it wasn’t because I was feeling depress or lonely. The “Me” represents the part of me representing himself, and is known as Jonathan. The “Myself” is the spirit or soul aspect. And the “MS” well, it’s the uninvited guest in my life, the third person at the party who’s been around for the past seven years. So to that lets cheers to life and the mystery of never knowing what awaits us, to the flow of potential outcomes that blow in our direction.

    Inspired by Alan Watts

    This post is inspired by the philosopher Alan Watts. I’ve spent hours listening to his thoughts on life, and every time I listen I find little nuggets of wisdom by him. Watts’ discussions on ego, life, and spirit often resonate deeply with me. I wish he were still alive; I would have loved to attend one of his lectures. His philosophy often revolves around individual perception and the nature of reality, suggesting that our suffering is deeply connected to how we perceive ourselves and the world.

    Perception and Reality

    The experience of suffering, particularly with something as debilitating as MS, can often feel profoundly isolating. You might think, “Nobody cares about what I’m going through,” and in many ways, this feeling is rooted in the very nature of our human existence. We live in a society that prizes independence, strength, and productivity. When illness strips these away, it can appear the world is indifferent to our pain. This perception, however, is not a reflection of reality but a product of our conditioned minds.

    Most people are deeply engrossed in their own struggles and challenges. They are not unsupportive; they are simply preoccupied. What I also l love to say is “Life is Lifing“, and understanding this can be liberating. It invites us to look beyond our immediate circle for empathy and connection. There are communities and individuals who understand the trials of living with chronic illness. Their care and support might not be immediately visible, but they exist.

    It is important to recognize that the feeling of being uncared for, or a better word neglected is part of the human condition. It is an experience shared by many, not just those with Multiple Sclerosis. The freedom lies in shifting our perspective from seeking validation and care from others to cultivating compassion within ourselves. By doing so, we transform our relationship with our suffering. We come to see that, while others may not fully understand our pain, we are not alone in our experiences of struggle.

    To keep it short, cute, and simple for me it isn’t about the how and the whys any more. Personally for me it’s about mindfulness and presence. I will get into this notion in just a little. On this journey, mindfulness and presence play crucial roles. By grounding ourselves in the present moment, we can ease some of the mental anguish that accompanies our physical suffering. We learn to embrace the now, not as a fleeting escape, but as a profound acceptance of what is. True compassion starts within, and from there it can ripple outward, connecting us to a larger web of shared human experience. This approach emphasizes self-compassion, mindfulness, and a broader understanding of human connection, aligning with today’s post inspired by and dedicated to the late Alan Watts’ philosophy.

    My Personal Reflections

      A diagnosis of a life-threatening, terminal illness, or an autoimmune disease like MS can lead to profound feelings of loneliness and isolation. I have experienced this loneliness, both while being injured in 2014 and now with my incurable disease. More so when I was injured and healing from a patellar tendon rupture back in 2014. At the time, this was the most painful injury I had ever endured in my 36 years of life at the time. The recovery was long, challenging, and very lonely. I could not drive or lift anything for about three months. Visiting anyone in my condition was not a particularly good idea either. For those long three months, I had to keep my leg elevated all day long. I remember spending my days doing Physical Therapy and playing a heap of video games. But there were no visits or phone calls waiting for me. To be completely honest, there were only two people who came to visit me while I was healing. One brought me a six-pack of beer and a furry friend to cheer me up. My other friend brought his whole family and a bag of mushrooms to help me heal. I never received a phone call from any of my family members who knew about my situation. This left me feeling sad and depressed. I felt as though all my kindness and the sacrifices I had made for others were not reciprocated.

    I woke up every day with nothing to look forward to other than getting stronger at PT and playing video games. I did not know how to process what I was feeling. I would get anxious thinking about those who never called or stopped by to give me their sympathy. I spent the first half of my morning feeling sorry for myself. How is it that I had so many friends and family members, yet no one checked in on me? I remember feeling this way for a brief time until I realized that I’m okay. No I mean I am really okay without the support. I was okay without the cheerleading. Why would I need a bunch of people wishing me well? Half of them don’t genuinely care anyway. I am being somewhat facetious, but I try to be my own voice of reason by reminding myself that people have their own problems and lives to live. I am just a small part of their larger story. I try to give myself the best advice, but my ego will say, “You would do it for others.” Yes, absolutely I would sacrifice my time to help anyone. I’ve always been like this since a very early age. I am helpful by nature, not just physically but emotionally as well. It was then, in November 2014, that a new “Myself” me was born.

    Fast forward ten years and an autoimmune disease later, I find myself facing another life-altering journey. This time, I do not expect anyone to check in on me. I am preoccupied with my own needs, as I have no other choice. No one can assure me that I will be alright. The people who are around me today are the ones who truly matter. The universe has brought special individuals into my life who not only care about me but would do anything for me. From my past experiences, I have learned to approach life with a more realistic and compassionate mindset. I do not hold any resentment toward those who were not there for me. I have learned to accept my situation through my spirituality, though I am still learning how to apply it to my illness.

    I’m Chilling Wheeling Through Life

    Closing Thoughts

    I still need and cherish the support from my family, and friends who are like family. You know who you are if you are reading this today. To a great extent, I have relied on my loving wife, kids with additional support from my brother-in-law and a close friend(s) who are like family. It isn;t much but I like to keep my grass short. Sometimes, we must rely on blood rather than water in times of need. Pear trees cannot produce apples, and those who pretendedo be there all along had nothing to give. It took me years to understand that they were not withholding compassion out of spite or anger; they simply had none to give. I am still learning how to accept my spirituality and apply it to my sickness. I am also convinced that my MS is not just a lesson for me but a spiritual lesson for those around me. How they can be of service, and w they will treat and deal with me are part of their journey too. What gets me sometimes are those who go to church and see me and think that GOD is coming and they need to look busy. That notion may have went over some heads, and I’ll explain later in another post what I truly mean. This disease is my lesson as well. The lesson here is patience, perseverance, and maintaining compassion in my heart.

    Thank you for reading, and may we all find the strength and compassion within ourselves to navigate the complexities of life. Cheers to the mystery and the flow of potential outcomes that life brings our way.

  • New Drug…who this?!?!

    It’s been quite some time since my last post, and I’ve been waiting until I had some good news to share. The past few weeks have been incredibly interesting, and I finally have something uplifting to talk about. This month, I received my infusion with the new drug Frexalimab. It’s a remarkable improvement compared to Ocrevus. The “O Juice” infusion is nearly an 8-hour affair, leaving me feeling sleepy and weaker than when I arrived in the morning. In contrast, the Frexalimab infusion takes only about an hour, followed by just one hour of observation. No need for pre-meds like Benadryl and steroids, which is such a relief! I feel so grateful for this change. The quicker process means less time spent at the hospital and more time feeling like myself. The new drug didn’t leave me feeling weak or tired.

    img_7423-1

    There was a lot of blood that had to be drawn at the beginning before the infusion and then again right after it was done. Despite this, from the moment I arrived at the hospital, I was treated like a VIP patient. Everyone from the doctor to the research team and the nurse made sure I was comfortable and felt at home.

    I’m so happy and grateful to have such a wonderful team of supporters. Although my wife didn’t come with me this time, and I felt a bit anxious without her, everyone’s kindness helped put me at ease. My wife is my number one supporter, and has always been there for me during my infusions, helping me with anything I needed. However, the day was so busy that I hardly noticed her absence. My wife had been with me earlier while I was waiting for my Access-A-Ride to arrive at our house. Spending that time together the morning of made me feel like I had an adventure waiting for me to tackle alone. She helped me with my wheelchair and gave me a playful pat on the butt, just like I was heading off on the short yellow bus. In a way it felt just like that, especially with those AAR vans resembling special needs buses, though they’re white instead of yellow.

    My infusions will be scheduled once a month and administer at the same hospital. They say it will take a few months before I feel a little better. This is if I was given the real medicine and not the placebo. So why do this if I don’t know if I will receive the real thing or not. Well…I am doing this for other multiple sclerosis warriors who may benefit from this medicine. I want to contribute in some way, and I will continue to find other ways to help my fellow MS warriors.

    “Sizzling Adventures: Our Family’s Dominican Republic Getaway”

    Boy, do I have a story for you! When I say the Dominican Republic was hot, I mean H-O-T. Multiply that by ten, and you might get close. I couldn’t tolerate the heat for more than three hours before I went “Ctrl-Alt-Delete” on the whole situation. But let’s start from the beginning before I get into the part where I practically melted into a puddle. Our journey began at the ungodly hour of 4:30 am. Why? Because my lovely wife insisted we needed to be there three hours early for our international flight. The last time we flew as a family was to Puerto Rico last August, and it was a breeze. This time not so much. The airport was packed. I’m talking wall-to-wall people. My magic carpet, also known as my wheelchair had no superpowers that day. The priority line, which I paid extra for was just as long as the regular lines. So much for cutting ahead! When we finally reached security it was like I had a neon sign saying “Search Me.” I had to get my hands and wheelchair checked three times before they decided to pat me down again for good measure. The whole ordeal, excluding the time we spent waiting in line, took about 15-20 minutes. My family who was waiting looked utterly bewildered, like we had entered an episode of “Airport Security: Special Confusion Edition.” After all that, we finally made it to the gate, and I made sure the airline was aware of my wheelchair situation. Little did I know, the real adventure was just beginning. Stay tuned for more of our sizzling hot escapades in the Dominican Republic. Spoiler alert: there’s a lot of sweat, sun, and fun coming up!

    Picking up where we left off, landing in the Dominican Republic was a bit of a challenge. Picture this: I step off the plane, expecting my trusty magic carpet (aka my wheelchair) to be waiting for me at the gate. Nope! They sent it off to the luggage carousel instead. Perfect. My wife had to flag someone down to get me a temporary wheelchair just so I could get to my actual wheelchair. Oh, the irony! But hey, being in a wheelchair does have its perks. I might have been the last one off the plane, but I was the first one through customs. The process took seconds, and before I knew it, I was at the carousel, reunited with my magic carpet. It was a similar story on the way back home. We zipped through the immigration process like seasoned pros. One minute we were at the gate, the next minute we were at baggage claim. I think my wheelchair secretly has some magical powers after all!

    So, we stayed at the Hard Rock Resort in Punta Cana, and let me tell you, it’s quite the place. I personally love this hotel, and my kids? Well, they fell head over heels after discovering they could order room service a million times over. But seriously, they loved how massive the hotel is and the endless options of beach and pools. Now, let’s talk about the weather in the DR. It was scorching hot. I’m talking “is this where hell is located?” hot. As you may know due to my condition I have to avoid heat as much as possible. Unfortunately, there wasn’t much I could do to cool down in DR. The drinks were cool but never quite cold enough, and the pool? Let’s just say it was more like a warm bath than a refreshing dip. The one saving grace was laying on the beach well, sort of. You might be wondering how I managed that with my wheelchair. Well, this hotel has designated areas for people with disabilities, complete with huge bamboo umbrellas and accessible wood flooring to get you onto the sand. Of course there were a few times when I had to politely ask others to vacate the area. It’s frustrating when people take advantage of spaces meant for those who really need them. They really do not know how difficult it is to get around.

    Check out this quick video to see just how accessible this hotel was for me. The video is in time lapse so pause if you want.

    A quick tour. I was half way there before I decided to record.
    Look at my big belly!

    Our family trip to the Dominican Republic taught us a lot, and I realized something wonderful: my kids are fully aware of my situation. I love them to death. They are the sweetest, most thoughtful kids any parent could wish for. For a long time, I thought they didn’t really understand what MS is or what it entails. But on this trip, I noticed they were more than understanding of my limitations and needs, often helping out without me even asking.

    One of the highlights of our trip, aside from stuffing our faces with massive amounts of food and drinks, was tackling an Escape Room. It felt like a little team-building exercise for the family. Evan was hands-on with all the puzzles, while Jacey was busy researching the room and solving riddles. Mom and I were the backups. I mostly provided moral support and talked a lot, while Mom probably helped with one or two puzzles. But guess what? We did it! We made it out of the room with five minutes to spare. Honestly, I didn’t think we’d make it out in time.

    I will leave a phot on the bottom.

    We did it. Ramos Klan ain’t nuthing to F**K wit.

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