It’s not casual. It’s not polite. It’s emotional. I love it like a fool who knows better. My favorite is iced coffee with oat milk, a little honey, and just a tiny bit of creamer. That’s it. Cold, sweet, and smooth. Every sip makes me happy, even while my body plots against me.
Living with multiple sclerosis means almost every choice comes with conditions. Coffee is one of them. It helps me focus, gives me energy, and makes mornings less miserable. But the trade-off? It sends my bladder into panic mode. Some days, it feels like I’m going to piss on myself. And sometimes, I do. That’s the truth no one puts on inspirational posters.
Still, I drink it.
Every morning. Without fail.
Oh GOD please NO! I’m almost there.
It’s part of my routine, my mental ignition switch. Once I take that first sip, the fog that MS brings starts to lift. I put on my headphones, hit play on my endless playlist of over 250 hours of music, and I can finally think. My brain starts connecting again. I feel sharper, more capable, more me.
That’s the magic part of caffeine. Studies show it can boost alertness, concentration, and short-term memory. It gives your central nervous system a small jolt, helping you stay awake and focused. For many people with MS, that little spark can make a big difference when fatigue feels like a full-time job.
But there’s the other side. The one nobody romanticizes.
Caffeine is a diuretic. It makes you pee more. For people with MS, that can be a problem, especially if you already deal with bladder urgency or incontinence. It can also upset your stomach or make anxiety worse if you have a lot of it. And if you drink it too late in the day, it can wreck your sleep.
It’s a beautiful morning!!
So why do I still do it? Because it helps me start the day. Because it’s one of the few pleasures that still feels like mine. Because the smell of coffee in the morning makes me feel human before the rest of the world starts demanding things.
I know what the experts say. Keep it under 400 milligrams a day. Avoid it if it triggers symptoms. Listen to your body. And I do. But my relationship with caffeine isn’t about perfection. It’s about balance. Some days I win. Some days I lose. But most days, I get through the morning feeling awake and present, and that’s worth it.
Oh look a Dunkin Donuts on the corner!
Yes, my bladder might betray me. And yes, I can practically hear myself getting fat from the oat milk and honey. But that first sip is peace. It’s clarity. It’s control in a body that doesn’t always cooperate.
So no, caffeine and MS don’t make the healthiest couple. But like every messy relationship worth having, we make it work.
Me not being able to sleep at night.
Author’s Note:
Living with MS means choosing your battles. Some days, it’s walking. Some days, it’s bladder control. And some days, it’s deciding whether coffee is worth the risk. For me, it usually is. Because life with MS isn’t about perfection. It’s about finding small joys in the middle of the mess. This story is one of mine.
Verily, lift up thine eyes unto the heavens, and behold: I walk with thee.—- BUT are you though, i can’t feel it.
There have been many moments when I’ve felt like one of God’s forsaken children. Lately, the distance between us feels like that of a 47-year-old son living 350 miles away from his dad—close enough for a human connection, yet we only communicate by phone, and half the time, nobody picks up.
Feeling Disconnected
I have an unconventional way of looking at life. I don’t expect everyone to understand, but perhaps the reason I feel lost and stuck is that I haven’t yet leveled up my avatar. This isn’t a moment of questioning faith or sulking because things aren’t going as expected this is my quest for patience, love, discovery, understanding, and inspiration. As if I need anyone to hand me the things that will make my life more manageable. (You can ask my wife; she’ll testify to how often I insist I don’t need anyone to do things for me.) I honestly HATE asking for help.
Searching for Happiness
Which way is Happy Town
While I said I don’t feel alone, I do feel isolated in my search for happiness. Maybe my idea of happiness and joy is too cliché or too specific. Yet, this seems paradoxical because I invite and find joy in many things—my gratitude practically radiates from my face. Instead of begging or praying, I now approach life differently. I have given up the illusion of a fixed “me,” hoping that my higher self will lean in and bring more peace and happiness. I believe it will be easier to let go and watch life unfold.
I cannot stress, wish for, or demand a savior to rescue me from my wheelchair. Then again, I’m not one for surprises—but it’s been so long since I’ve been impressed that I’d welcome a positive shake-up. Please send me a rescue team; today is my day. I remind myself daily that the more gratitude I show, the further my needs seem to run away. It’s almost as if God themself is telling me to wait. After all, there are others who need to eat, who are starving and sick there are literally fires to put out and people in power who need to be checked. But aside from all that, I believe I deserve a conversation to guide me, and I’ll take it from there.
On Anxiety, Identity, and the Realities of MS
Waiting for my Ride in the cold.
Before anything is misconstrued, I don’t want anyone reading this to think I suffer from a mental disorder. If anything, I might greet you with anxiety and then introduce you to a bit of winter blue depression. Listen, if you live in a big city and don’t show some signs of anxiety, then are you even real? You might as well be an NPC at least here in New York, where we grumble about bacon, egg, and cheese prices and congestion fees.
Back to my disoriented self: yes, I am confused by this reality. On one hand, I’m fighting for my spiritual freedom; on the other, I’m battling physical limitations. I’ve been a hostage to this disease (Multiple Sclerosis) for some time now, and I must deal with its impact on every part of me. I won’t lie it weighs heavily on me because I have lost so much. There are no days off for me, not even on weekends. The biggest stressors are my living situation, my work, and other daily annoyances that hinder an optimal life.
The losses I have experienced because of MS are real, deeply personal, and sometimes impossible to articulate. The losses in certain physical abilities have not been fully mourned. It’s hard to stomach the fact that I sometimes lose my sense of independence. This disease has affected my career and the effortless daily life I once knew. These losses aren’t just about mobility or energy they touch on my identity, my relationships, and the way I move through the world.
Transformation Through Adversity
It may just be my day.
Yet, I also know that loss doesn’t define me. I hope that through everything I’ve shared, you can see how I’ve found humor, leaned on love, and moved forward despite the hand I’ve been dealt. To say I lost a part of me would be a lie; instead, I have transformed. I hope that through my writing you can witness my resilience and my ability to connect and reflect on what Multiple Sclerosis has taken.
I am literally crying as I type these final words. I want to say that I am still here, still thinking, and still spreading love the “Brooklyn Way.” I knew this disease wasn’t going to be easy. There are moments when the weight of it feels unfair and exhausting. But I also believe that in the spaces left by what’s been taken, I’ve made room for something else, perspective, wisdom, and a sharpened sense of what truly matters. And that… that’s something MS can’t touch.
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.
Me Myself, and MS 