This post is messy. It’s scattered. I wrote most of it in the back of an Access-A-Ride van , and then sometimes late on a Friday night. These notes are just random thoughts I sit down with when I am alone. These are raw notes from my “F-U Personal Journal.” I cry when I write like this. Not once or twice. Every time. Because when I tell the truth to myself, it hits hard.
My body misfires.
Muscles feel weird, they tingle and twitch without warning.
Feet drag.
Hands get stiff and cramped.
Sometimes I pee before I’m ready.
Sometimes I can’t pee at all.
Sometimes I pee on myself.
This is MS.
It attacks the protective layer around your nerves.
Messages get scrambled.
The connection breaks down.
When your body starts lying to you, trust becomes a problem.
You could breathe through anything except for death.
You second-guess the recliner.
You second-guess the walk to the bathroom.
You second-guess your own timing.
You second guess walking down the stairs.
The trust issues aren’t mental.
They’re neurological.
They show up in your gait, your joints, your breath.
They change how you move.
They change how you plan.
You stop trusting mornings.
You stop trusting heat.
You stop trusting your body to act right in public.
You have to try and trust the process
You start looking for patterns that don’t exist.
You overthink.
You brace for the next fall.
You assume collapse is close.
Then the spiritual trust starts to fade.
You question your path.
You question God.
You question purpose.
You stop praying.
You stop meditating.
You stop expecting.
This happens fast.
One bad week.
One small fall.
One public accident.
Then your beliefs start slipping too.
All I could do is be aware of what’s happening
I show up by writing.
I show up by resting.
I show up by talking to my wife without pretending.
I show up by asking for help when I need it.
None of this feels natural.
But it’s necessary. My up bringing taught me to be self reliant. It is hard for me to ask for help.
I don’t trust every step.
I don’t trust everyone.
I trust breath.
I trust timing.
I trust Spirit, quietly.
Again sometimes you gotta follow the breathe to come home
If you’d asked 16-year-old me what being a man looked like—well, growing up in the Lower East Side during the ‘80s, I probably would’ve tossed out something ridiculous like:
“Don’t cry. Lift heavy. Protect your people. And hey, maybe throw in a six-pack while you’re at it.”
That was pretty much the unofficial “man-up” starter pack.
And for a long time, I stuck to it. I hauled all the groceries upstairs in one go—arms burning, pride intact. Didn’t ask for help. Didn’t admit when something hurt. I just push-through. Or poured a drink and shoved the pain somewhere quiet. Independence was everything. My body was proof I had it all together.
Then MS barged in, uninvited.
No warning. No knock. Just kicked the damn door off the hinges and said, “We’re flipping the script” get on the floor!!!! Give me all your energy!
Suddenly, my legs had their own agenda. My Energy? Came and went like a moody roommate. I went from being the one who moved the furniture to the one sitting in it, needing help just to get up. And let me tell you—there’s no section in any manhood guidebook that covers asking your wife, grown as you are, to help you out of bed just so you can pee.
At first, I panicked. Thought maybe I was losing who I was.
Because we’re taught that strength is about action. Pushing. Lifting. Enduring. Never letting anyone see the cracks. But MS? It forced me to sit with something uncomfortable:
Real strength sometimes means stopping.
Not because you gave up—but because you finally decided to stop pretending.
It’s letting your wife see you “Ugly Cry” without laughing them off.
It’s telling your kids, “I can’t today,” and trusting they’ll love you anyway.
It’s asking for help without feeling like you just checked your man card at the door.
And here’s the crazy thing: I didn’t lose manhood. I just had to redefine it. Not really by choice, a decision to mentally survive the long game ahead.
Turns out, I’m still strong—just in ways that don’t always show up in muscle. I protect my family with more than my back. I protect them with presence. With showing up, even when my legs don’t. With listening when I’ve got nothing else to give. With humor. With stubborn love.
Fatherhood feels different now. My kids don’t just remember the guy who walked them to school or made sure they had the freshest gear. They see the guy who rolls in a wheelchair and still manages to show up—who laughs, who stays soft, who still loves their mom like it’s day one. They’ve learned that being tough doesn’t mean being hard. It means staying kind when life’s been anything but.
That last sentence hit me hard as I wrote it, not gonna lie. I got a little misty eye.
Partnership, too—it’s on a whole new level. My wife? She didn’t stick around because I can carry heavy things. She’s here because we carry each other. We’ve had the kinds of conversations that peel your ego back like old paint—where you admit you’re scared, worn out, or just need to be held. That’s not weakness. That’s trust. That’s real intimacy. That’s grown-man strength.
So yeah, I’m off the “man-up” train for good.
If manhood means bottling it all up, pretending nothing phases you, and dying with your pain locked in your chest—I’m not interested. I’ll take the version where you speak honestly about what hurts. Where you cry if you need to. Where you’re still the rock, just not made of stone.
MS stripped away parts of my independence, sure. But it gave me something better:
A masculinity built on honesty. Connection. Grace. And yeah, vulnerability too.
Funny thing? That kind of strength—the kind rooted deep in who you are—it doesn’t go anywhere. Not even when your legs do.
Because strength isn’t just what you carry.
It’s what you’re willing to share.
I have not said this in a while but, “I love you and I hope you love me too”.
The other night I had a dream. And like most dreams, it didn’t ask for permission—it just arrived, vivid and weird and strangely sacred…. I think.
I was walking through a quiet neighborhood. Fall had clearly checked in: the trees were bare, the air felt crisp, and I was with my best friend’s parents and a small child—maybe two or three years old. We found two balloons along the way. Simple white ones. Joyful, floating, light. The kind that make toddlers smile and grown-ups nostalgic.
The baby cried. I don’t know if it was her balloon or just the idea of something pure drifting off forever. But we comforted her and went to get another one. Because that’s what you do when something good escapes your hands—you try to bring back a version of it.
We kept walking. Me, the baby, the balloons, and the falling season.
Somehow, as dreams go, I began collecting more white balloons—walking through a neighborhood that looked both familiar and not. But the trees, tall and bare, made me nervous. I worried the branches might pop what I was holding. So I did what any balloon-carrying, overprotective spirit-warrior would do: I brought them in closer. I held them tightly, protecting these fragile floating things like they were sacred.
Eventually, I arrived at an apartment—maybe mine, maybe someone else’s—but I knew I was safe there. And here’s where it gets trippy.
I released the balloons into the room, expecting them to rise. But they didn’t. They deflated mid-air, falling gently to the ground… and when they hit the floor, they transformed into coins.
Yeah. Coins.
Not quarters or nickels or anything I could identify. Just strange, sacred coins. I dropped to my knees and stared at them like a man trying to decipher a challenging Sudoku puzzle. I turned to the baby and whispered something that surprised even me:
“Don’t worry… they’ll turn back into white balloons.”
I woke up still holding that sentence in my chest.
I don’t always recognize the coins this illness gives me. They’re not always shiny. Sometimes they look like days I can’t walk. Or mornings I wake up angry that my body forgot how to be my body. But every now and then, in the silence of reflection, I realize they’ve been currency for something deeper: patience, presence, surrender.
And maybe… just maybe… some of them are waiting to become white balloons again.
If you’re reading this and holding something fragile—hope, grief, identity, health—I see you. Keep walking. Hold on tight. Let go when it’s time. And trust that even the deflated things still carry magic.
Because even coins can fly, if you believe hard enough
So somewhere between the heat wave in NYC and the hallucination of me walking without falling, I realized: it must be July. Hi
This is that time of year where the sun feels personal. Summer has an unspoken beef with me. It’s not just “hot” in the city that never sleeps, it’s hostile. For folks with MS, the July heat isn’t a vibe, it’s a villain. And not even a creative one—just a repeat offender named Uhthoff’s phenomenon. I ain’t gonna lie I had to look up this symptom . Even after learning what it was I still can’t annunciate this terminology, without it sounding like a jazz musicians name right, right? But instead of smooth sax solos, Uhthoff brings blurred vision, brain fog, and the sudden urge to cancel everything… including standing. I speak from experience.
It’s so hot the city is hallucinating .
Let me break it down:
A tiny rise in body temperature—just 0.5 degrees—and my nervous system taps out. Full shutdown. One minute I’m coasting through the day, the next I’m moving like Wi-Fi in a tunnel. You ever feel your limbs betray you at a barbecue? Welcome to my life.
But here’s the kicker: to the outside world, I look fine. I am chilled, maybe zen out. People don’t always see the invisible war going on inside. The way my body becomes an obstacle course, my brain a buffering signal. That’s where MS is at its best. it’s a stealthy assassin. Loud in your body, quiet to the crowd. And that silence? It can mess with your spirit.
Omnm Omm Omm
I used to push through it. Pretend. Deny. Perform. But lately, I’ve started asking myself a different question:
“Who do I need to be visible to? Them… or me?” If I don’t show up for myself, I’m ghosting the one person I can’t escape—Me.
You don’t know what I know. You ain’t saw what I saw.
And speaking of visibility… meet my new therapist, pet soulmate, and chaos coordinator: Amira the cat. We adopted her a few weeks ago. she is only three months old, and I’m convinced she’s here to teach me inner peace by driving everyone else insane. She is a “pulga” jumping, and hopping everywhere.
This cat has ADHD, and zero respect for boundaries, basically, she fits right in with the fam. But watching her is like watching a masterclass in unapologetic presence. When she’s tired, she sleeps. When she wants love, shes looking for takers. When she sees any of the cats in the hallway at 3am, she chases at them like they owe her money. Iconic.
Y’all ain’t ready for this chaos.
In a weird way, she reminds me what I’ve been trying to learn this whole MS journey:
You don’t owe anyone an explanation for your body’s rhythms. Your healing isn’t a performance. Your stillness isn’t laziness, it’s a spiritual boundary.
Summer July this year is no joke! The air is thick like regret, the sidewalk shimmers like a mirage, and my MS is flipping channels with no remote. But I’m still here. Melting a little. Laughing a lot. Learning to honor the invisibles, like faith, fatigue, and the fierce joy of showing up anyway.
“It happened so fast, I didn’t even feel the blast”
Since my new job recently, I don’t have access to a computer where I would normally past my time by writing in my blog. So here I am doing this on my iPhone 13. So here we go!
In just a few weeks, I quit my job, took a breath (finally), and walked straight into a brand-new chapter. I swapped sly comments from my manager for balance, cold leadership for warm-hearted teammates, and plot twist I became a cat grand dad.
But let’s rewind for a second.
Leaving my job at Equitable wasn’t a snap decision. It’s been a long journey of resume sending, ghosted interviews. I spent everyday for the past three years refreshing my emails. In hopes there was a new opportunity waiting to happen for me. I gave that place 15 years of my life. 15! That’s longer than some of these financial planners have even had a driver’s license.
I didn’t expect a grand exit, but what I got truly moved me: genuine love and support, not from management, but from my coworkers. The planners. My team. The people I worked with, not for.
This is one of many cards I received.
The folks I supported showed up with kindness, encouragement, and reminders that I mattered. They made me feel seen and valued in ways I hadn’t felt in years. It was healing. It felt like this to very moment I was leaving those doors for the last time. I had a parade of people walking me to the elevator bank. I even had one guy chase me down the block to hand deliver the card you see above.
So what about the leadership or management? You know the ones you had meeting lunches with, the ones who wanted white glove treatment?…Crickets. No farewell lunch. No handshake. Not even a thank you. Just the same quiet indifference they’d shown whenever I asked for small things—like empathy—and compassion.
When you live with a chronic illness like MS, that silence hits different. I never asked for special treatment. Just humanity. I think collectively we are all lacking this fundamental component. We could talk about this in depth at a later date. This is not to offend the reader, this is towards the ones you know well.
So yeah, I left.
And for one whole week, I did something wild—I rested. I breathed. I let myself be still. I’m lying!! I played video games for 12 hours everyday. I’m sorry but I am just hooked to this one Xbox game. Then I started a new role. One that came with more responsibility and, finally flexibility!
At Telstra, I’ve found a team that’s not just sharp, but kind. People who greet me with respect. Who understand that contribution doesn’t always look the same for everyone.
And still… I was scared.
That week before my start date? I was on edge. Anxiety in full swing. I barely slept. My wife was concerned. Meditating couldn’t help me. My mind was stuck on loop:
What if I can’t do this?
What if I made the wrong call?
What if they see my wheelchair before they see me?
Spoiler alert: Fear lies.
This team has welcomed me in every way that matters. I show up. I contribute. And slowly but surely, I’m starting to believe again, not just in the work, but in myself. You got this kid!
Oh—and my favorite at home coworker? She doesn’t even get a W-2.
Meet Amira Lynn, our new cat. She’s already the queen of the house. We suspect she has a little feline ADHD (zoomies at every time O’Clock sharp), but she brings the kind of joy that fills a room, and maybe leaves a few claw marks.
She’s chaos, sure. But the best kind. The kind that makes you laugh. The kind that reminds you that love doesn’t always sit still.
So yeah, it’s been a ride. New beginnings are rarely smooth. But sometimes, when you walk away from what no longer serves you, you find a door you didn’t even know was there.
To anyone standing at the edge of change: trust yourself. Even if your voice shakes. Especially if it shakes.
Signing off until next time with love (and cat hair),
Let me start with a little disclaimer before we dive into this fun post: I’ve never had an actual roommate in my life. I do, however, jokingly refer to my two kids as our “roommates.” Because let’s be honest—they eat all your food, never wash dishes, and leave a mess everywhere. Yep, those are my kids. And I bet you’ve got a pair like them living in your house, too. They’ve gotten better, but there’s still room for improvement. These days, the chaos at home isn’t quite as disorganized as it once was—thanks to them getting older—but they still manage to make the house look like a ghetto version of HomeGoods from time to time. Organized, but wildly out of place. You know what I’m saying?
My wife and I kind of chose these two to share space with, and that’s one of the joys of parenting. Some roommates you pick. Others? They just show up—with a suitcase, a spare key, and no intention of ever leaving. That’s how Multiple Sclerosis moved into my life. No knock on the door. No warning. Just—boom—guess who stepped in the room? And no, it’s not paying rent either. What’s the Wi-Fi password? It’s that kind of vibe I’m talking about.
Roomate #1 & #2
Here’s the twist: I believe G.U.S. (God, Universe, Spirit) doesn’t make house calls without a reason. So, I began to see this unwanted tenant not just as a chronic condition, but as a spiritual coach—annoying, inconvenient, yet strangely enlightening. MS has slowed me down. It’s humbled me. It’s forced me to ask deeper questions. And in that stillness, I hear something sacred whispering back. Sometimes it says, “Get up—move in whatever way you can.”
But my favorite whisper?
“You are greater than this.”
This blog isn’t about suffering. It’s about how suffering cracked me open—and allowed me to see the divine in everything. In the broken places, the light keeps finding its way in. My path doesn’t follow a straight direction—it’s already been completed, preordained by my soul’s purpose. There’s no point trying to fight what’s destined. My role is to let go and simply observe how this gift of life will bloom. Play along, avoid the plastic, and be authentic every day. Because honestly? My life is okay. Yes, I am sick, but this doesn’t stop me from existing.
Living with MS has transformed daily routines into sacred rituals. Getting out of bed isn’t just about brushing my teeth and chasing the day. It’s an act of gratitude. Some mornings, just sitting up feels like a ceremony. My legs may not cooperate, my balance might be off, but the awareness I’ve gained? That’s divine.
Before MS, I chased life like most people do. I chased work. I cornered the gym. I held my errands hostage until they surrendered. I ran to my family. I ran to take my kids to their events. Looking back, I realize I was living almost robotically—caught in a marathon toward things that “defined” me. Now? My relationship with life has changed. I listen to it. I’ve been forced to stay still. I’ve come to believe my body is a map, and MS is the red ink showing me exactly where to slow down and tune in.
G.U.S. and I talk often—not always with words. Sometimes it’s through anxiety. Sometimes through breath. Frustration. Or a 4 a.m. laugh when I drop something for the fourth time and just say, “Really? This again?” And even in that moment—there’s a lesson. Or at least a cosmic smirk. Spirituality, for me, isn’t incense, Zen music, or transcendence. It’s raw. It’s real. It’s present—in my wheelchair. It’s sleepless nights, discomfort, falling to the floor and getting back up. It’s waking up and sensing what kind of day I’m going to have. It’s in the way my wife looks at me when I’m struggling—and doesn’t flinch. It’s in the surrender to what is—without giving up who I am.
MS didn’t just change my body. It rearranged my soul’s furniture. And here’s the part no one tells you: sometimes, the hardest roommates are the ones who teach you how to live. Speaking of roommates, I’ve learned from my kids that change comes slow—and it slips through your fingers sometimes. So yeah… MS still lives here. We bump into each other in the hallway, argue over space, and it definitely eats more than its share of my energy snacks. But we’ve reached an understanding. I stopped trying to evict it. It stopped trying to ruin every room in my body.
Now, we coexist. Some mornings it’s quiet and respectful. Other days, it blasts music at 6 a.m. and clogs up the bathroom tub. But even then, I remind myself—this isn’t just about disease. It’s about discovery. MS didn’t break me. It broke me open. And through those cracks, G.U.S. moved in—with all the love, lessons, and mystery I didn’t know I needed. So now it’s a crowded apartment: me, MS, and G.U.S.—doing this weird, wonderful dance called life. Some days I lead. Some days I lean. And some days, I just laugh. Because honestly…
Who knew enlightenment came with mobility aids and a roommate who doesn’t do chores?
Last week gave me a bitter sample of what life could look like if I had to do this MS thing with no safety net. No wife reminding me to take my medication. No kids helping with small things that feel like mountains. No one checking in just to say, “You good?” It was quiet. Too quiet. And that silence? It wasn’t peace—it was a preview.
This month, my wife went on a well-deserved solo vacation to Africa (Morocco) to be with our daughter, who’s studying abroad. At first, when it was just talk, I was genuinely happy for her. As the days drew closer, I stayed excited for her. I knew this trip could be a much-needed reset. Caring for someone with a chronic illness like Multiple Sclerosis isn’t easy, and I’ve always known that. But I had one lingering question: “Could my wife do this trip without me?”
I’m leaving on a jet plane, I don’t know when I’ll be back again.
You see, back when I was healthier, I was the team leader on all vacations. I carried all the passports, held the mobile tickets in my “murse” (that’s a man’s version of a purse), and played the role of chauffeur, butler, and part-time barista as well. I would make sure my wife had her happy juice by 10 a.m. because, hey—it’s 5 o’clock somewhere in the world.
While I was focused on how she’d manage without me, I didn’t give a second thought to how I’d manage without her for a week. Who was going to cook? Take my plate to the kitchen? Get me water or pick up the remote I dropped? Work was out of the question—there was no one to get me out the door or receive me when I came back. My manager wasn’t thrilled to hear I’d be off for nine days. I offered to work from home. No response. Silence. Corporate America doing what it does best…..ghosting.
There was not a moment I could’ve given my wife a proper sendoff before she left. The living room was filled with two suitcases and an oversized carry-on that could’ve fit a week’s worth of Trader Joe’s groceries. I had therapy that afternoon, so I didn’t walk her out. When my session ended, I came back to a quiet, empty apartment, and loneliness hit like a sucker punch. “Well… here we go. You got this, Jon.” That night, I wasn’t too bothered. I had the bed all to myself, and I made it into a fortress. Best pillows for snuggling, one for my head, two for my calves. I floated through the night like a king. Great sleep. Great dreams.
Yes I am a cat dad.
But the next morning was different.
My son was home, getting ready for school, so I wasn’t technically alone yet. But once he left, the silence moved in. No sound—except the occasional door creaking downstairs, a car zooming by with bass on blast, or my cats doing what cats do. One of them purred so loud it sounded like I was living inside a Dolby Surround Sound commercial. The other? Snored so hard, I thought the lights might flicker off. And my heartbeat? It was giving shamanic healing drum circle energy. So I meditated from time to time alone at home.
Am I alone?
But the silence didn’t stay silent for long. It morphed into that other kind of noise; the one in your head. The voice that kicks your mental door down like, “BOOM, guess who’s stepped into the room?!” And just like that, the intrusive thoughts took over:
“What if I fall? Who’s here to call 911?”
“Would anyone find me in time?”
“Could I bleed out alone in my apartment while emergency services try to get into the apartment?”
I felt trapped. My building has stairs, and my wheelchair can’t make it down the last part. If I had an elevator, I could at least roll to the park, grab some lunch, feel the sun on my face. But nah I’m here, grounded by concrete and circumstance. That inner voice? It didn’t let up.
“You could be doing better for yourself.”
And to be fair, it wasn’t wrong.
My MS workouts leave me depleted. I barely do them anymore. They feel pointless because the results don’t show. But I know deep down they’re not about short-term wins. They’re about preserving what little strength I’ve got left. They help with mood, too. Still, I’ve gained a lot of weight since 2022. I swore in 2007 I’d never be “Fat Jon” again. But here I am. Can’t hide it. Can’t suck it in. But… f**k it.
So while my wife was away, I tried a few new things. Chair yoga. An online aerobics class. Both had me so wiped, I couldn’t walk after. I was out of breath, out of shape, and definitely out of alignment. I even skipped the last ten minutes of the class. No shame. After moving my body, I nourished it. Made breakfast. Then I listened to a history book on Spotify, America for Americans by Erika Lee. This book here was upsetting for me. Whew. Let’s just say it’ll make you lose your appetite and your faith in flags. “Make America Great Again?” When exactly was that? Asking for every immigrant family ever. Spoiler alert: This country has a mean streak. But I digress…
Back to being alone.
With no distractions, I got a lot done. Wrote a few blogs. Reflected. Got honest. When you’re left with just yourself, things get real clear, real quick. Why am I still fighting for mobility, for a life that flipped on me? Why am I still pushing? Because somewhere deep inside, under the layers of grief and grit, I still believe in what’s possible. I miss paintball with the fam. Boxing with my BFF. Basketball with my son. I miss beach walks with my wife while on vacation.
Truth is, this disease humbled me. It cooled me down. Mentally. Before MS, I was wild. Loud. Selfish. Rude. Now? I listen more. I pause. I see people better. I feel things deeper. And in that silent stillness, between my cats doing purr sound checks and my own thoughts pacing the room, something shifted. Loneliness started speaking a different language. Not fear. Not grief. But truth. And strength. And reflection. I started seeing my alone time not just as isolation, but as revelation. A kind of spiritual download, like the new age spirituality folks say. Because when you’re forced to be with only yourself, the mirror isn’t glass, it’s internal.
With this new realization I knew I wasn’t going to stay still.
I realized this:I don’t want to do this alone. But for a moment, I think I could.
I cooked when I could.
Rested when I needed.
Cried without shame.
Laughed mid-struggle.
Stretched.
Typed.
Journaled.
I listened.
I survived.
And sometimes… surviving is the flex.
I don’t ever want to do life, or MS….without the love I’m blessed with. My wife. My kids. My furry roommates. My tribe. But now I see that even when I’m alone, I’m not powerless. This disease has taken a lot from me, but it handed me back this truth:
Even by myself, I’m still here.
Still listening.
Still fighting.
Still me.
And if I had it my way? I’d still prefer someone in the next room yelling, “Babe, did you take your meds?!” Because connection? That’s part of the medicine. Support is spiritual. Love is adaptive equipment. And my people? They’re my ramp back to sanity, purpose, and joy. I’ll never take them for granted again, not the voices that check in, the hands that help, or the presence that makes the silence less loud. I survived, but it wasn’t cute. I was out here dropping remotes, burning toast, and giving myself motivational speeches like I was Gary V . I proved I can do it alone….but why would I want to. While I held it together, while I pulled strength from places, I didn’t even know were still alive in me. I say all this to say this one last point, and let me be crystal clear: I am capable of being alone, but I wasn’t made to thrive alone. This Journey with Multiple Sclerosis isn’t just about resilience; like I said earlier, it’s about relationships, Love, Connection. The folks who help me laugh when I want to cry (which is always), who bring warmth to the coldest days, who remind me I’m more than this diagnosis. Doing it alone taught me I’m strong. But being seen, being held, makes me whole.
Because surviving is one thing but thriving? That takes people.
They told me the van would be here between 2:30pm and 3:00pm.
So, I wait, . and wait, ..waiting some more.
A 30-minute window for a ride I’ll only need for an hour ride back home; that is if I am lucky today. But okay, sure I play along. Soo I get ready, I went to the bathroom, packed my bag up, headphones, and even gave myself the pep talk: This afternoon, we ride, don’t matter the time they arrive. Just be cool and patient. And so, I roll out with empty bladder, headphone on head, and the unpredictable mood of my legs. Then there is the moment when the driver says, “we have to pick someone up, and they will be dropped off before you”. Actually, we’re taking the long way. Hope you packed patience. ” Patience!? Would that be in the AAR app. Can’t find it because there’s no button for that. No one ever told me this, but I wish they would rather than surprise me. But then again MS doesn’t give me a heads up on what kind of day I will be having today. Just like Access-A-Ride MS does the same to me. It promises to show up one way, then takes a detour. But you gotta have patience, no?
That’s life with MS. A game of windows and guesses. Of showing up dressed and ready, even when you’re not sure if the ride or the strength is coming. When I first started with AAR I used to get furious when they were late picking me up or dropping me off. These days I’ve learned to treat waiting as a kind of spiritual practice. Not because I want to, but because I have to. The van at times might be early. Or it might ghost me altogether, leaving me explaining to someone on the phone that yes, I was outside, and no, I didn’t just imagine the whole thing. This really happens to me. I feel that the universe is babysitting me and wants to see my reaction on these incidents of chaos with AAR. If i do bad on these test they will just give me more days like this. BUT if I am unbothered by the situation, then this is where the magic happens. All chaos becomes peace and order for me. Hard to achieve but I like it there. Most the time I pass the test with a 65, but lately I have been getting a gold star. A 100, A++ for sure.
This is how life with MS works. You get windows of time, moments when your body shows up and says, Let’s go! Then other times when it just puts up a “Closed for Maintenance” sign and ghosts you like most of my job interviews. Access-A-Ride is like that too. You never quite know what you’re gonna get. It could be a courteous driver with good music and soft turns… or it could be a van ride from Dante’s ninth circle of potholes, with a driver who seems to have trained at the Fast & Furious Academy. I had one guy who drove like this, all while having lunch, holding a beverage in one hand, talking on face time with his adolescent son, while doing 45 MPH, to only be greeted by the stop sign on every corner…. Did I miss something, oh yes he had the in car stereo on blast. I thought I was going to die in this van. I texted my wife a picture, and a video of what was happening in the event she had to inform someone my cause of death. See below if you think I would make this up.
Did I leave something out? Oh yes, Go New York, Go New York, Go!
The driver is a story on it’s own. Sometimes I ride alone. Other times, I share the van with fellow travelers, people with canes, scooters, invisible wounds. We don’t always talk, but there’s a silent nod we give each other. A “you too?” A kind of sacred knowing. Some riders are cranky, some talk a lot, others think they know more than the driver, and they are arguing about the best routes to get home. I have to say 10 times out of 10 the customer is always right about getting home quicker than the Vans built in GPS.
One day, I rode with a woman in her 70s. Cane in hand, eyes full of stories. She looked at me and said, “I used to dance. Now I ride.” Without missing a beat, I said, “Same. Except I never really danced that well to begin with.” She laughed. “Then you better keep riding with rhythm, baby.” Touché. She didn’t see my ear buds plugged into my ear that day. I was already plugged into “Now that’s what I call music 90s” and I was dancing like Christopher Walkens in the Fat Boy Slim Video “Weapon of Choice”, I love that Video!
MS and Access-A-Ride make quite the duo, like a dysfunctional buddy cop film. One slows you down, the other makes you wait. They both keep you humble if you allow yourself to be humbled. Still, there’s something sacred about the movement. The ramp lowers, I roll in, get strapped down, and just for a moment, I’m going somewhere. I’m not stuck. I’m not homebound. I’m in motion, and that counts. But you also learn that motion any motion, is a kind of defiance. A quiet refusal to be parked indefinitely. Every bump in the road, every turn, every awkward lift of the hydraulic ramp feels like a metaphor for my life with this disease: not smooth, not simple, not what I ordered, but still moving forward.
Ramp go down the hole, down the hole!
Sometimes I wish Access-A-Ride came with a DJ. Something to match the rhythm of the bumps on Broadway Ave. Maybe Ralph McDaniels narrating the trip like it’s Video Music Box: “Coming up next, a slow crawl through Bushwick with your host, life with a chronic illness.” Brooklyn teaches you patience, even when you don’t want to learn it. MS doubles down on that lesson like a stubborn uncle at the cookout who won’t stop telling you how things were better in the ’80s. Ohh wait that’s me. I am that guy for my family. But since we on the topic. Yes rent was $600 and Coney Island wasn’t overrun by tourists. And speaking of patience when you’re sitting in that van for 90 minutes for a ride that would take your cousin 15 minutes in his beat up 93 Dodge Spirit, you start to question things.
Is this a ride? Or a spiritual boot camp with seatbelts?
Are we taking the scenic route, or did we just get lost in Queens again?
Access-A-Ride has taken me places Google Maps didn’t even know existed. One time, I asked the driver, “Where we headed next?” He shrugged and said, “The GPS knows. I don’t.” “It’s the boss.” “This is your boss I said”!!??… are we trusting technology with no backup plan? My whole nervous system is already unreliable we don’t need navigation drama too!
But I digress. There’s a weird kind of gratitude that grows on you when you ride these streets long enough. You start to notice the little things:
• The driver who waits when he sees you rolling toward the door.
• The fellow passenger who gives you a nod that says, “Yeah, I get it.”
• The skyline hitting just right as you cross the Williamsburg Bridge at golden hour, and for a second, your body doesn’t hurt, and your spirit feels…light.
I love, and look forward to these moments. That’s Brooklyn magic right there. Philly has the same effect on me too. Even when life has you strapped in and rolling slow, you still find rhythm in the ride. You still crack a joke, still make someone laugh, still fight for your dignity in a system that doesn’t always see you. Because that’s what we do out here. We adapt. We hustle. We wait for the van, curse under our breath, and ride anyway. We make mobility look like rebellion.
So yeah Access-A-Ride might not be perfect. But it’s part of my story now. Part of my movement, literally and metaphorically. And if you ever see a van stuck in traffic on the Jackie Robinson with a guy inside cracking jokes to himself and MS sitting next to him with a smug look… just know: That’s me. Still riding. Still laughing (sometimes), Still Brooklyn by the way of L.E.S. (Lower East Side). Sometimes progress doesn’t look like crossing a finish line, it looks like catching a shared van to a doctor’s appointment, or work and being grateful the driver didn’t forget you at the curb. So yeah, some days I ride. Some days I get rerouted. But I’m still showing up. Still moving. And when people ask how I’m doing, I tell them the truth: “I’m still riding. And that’s enough.” No one truly cares how you doing.. Thats a topic for a later date though. Any way I love you and I hope you love me too.
Always on the go, never knowing what tomorrow will be like.
I love you, and I hope you love me too. I’m back at it again with another blog post for March, but this time, I’m trying something different. A little weird? Maybe. But stay with me. I want to have a conversation with MS… as if it were a person.
Yeah, I know it’s a stretch. Even as I write this, I’m still not fully sure how this will unfold. But I thought it would be an interesting concept. What if we gave Multiple Sclerosis a mic and let it talk back? What does it want? Why is it here? Who even invited this guy?
This conversation is just my take. For other warriors out there, your journey with MS may look completely different. If this blog doesn’t speak to your personal experience, my apologies. But I hope it brings you a little insight… and maybe a few laughs too. I want to dissect what kind of creature we’re dealing with here.
Because let’s be real: MS isn’t just a disease, it’s a shape-shifting intruder. It’s selfish, draining, unpredictable. It takes advantage of us when we’re at our weakest and dares us to fight back. And fight we do.
I shared this idea with my therapist, and she loved it. She even gave me some suggestions. Her excitement gave me the creative push I needed. I wasn’t sure how to structure it—so what you’re about to read is the best way I knew how to bring this idea to life.
So without further delay… let me introduce you to the guest who really needs no introduction. This thing has traveled the globe, no passport, no visa. It’s untouchable, yet has touched the lives of millions. Some say it’s one of the most hated entities on the planet. I’ve heard it really knows how to get on people’s nerves. I like to think it’s just misunderstood.
Here to set the record straight… MS.
So we begin….
It’s a New Day, and I’m feeling Good.
MS: Well, that was one hell of an introduction. Got me misty-eyed. Beautiful stuff.
Yes, I’ve made my presence known for a few decades now. It feels good to share what I have to offer. Honestly, I’ve never met a body that could completely ignore me. Some people never recognize the value in my work, but I show up anyway. Day and night, I bring change. Uncertainty. Chaos. And sometimes, oddly enough, hope. I mean, my second cousin Cancer gets all the attention, but we’re both out here doing impactful work.
Diseases like me, we bridge the gap between faith and the unknown. We force people to examine everything. Family, purpose, mortality. You’re welcome.
Anyway, I digress. I get passionate sometimes. How are you, man? It’s been, what, two years since we really sat down like this?
You: For the sake of this interview, I’ll respond, I’m just fine to you. The family’s good. We’re all just trying to stay grounded in this unpredictable world. I pray love and peace find everyone eventually. Anyway, I’m glad you’re here. I know you’ve got a busy schedule ruining lives and all. So Let us get straight to it. Thank you making it in today.
MS: You know how it is….slow motion, but still spreading the love. Did you catch the Knicks game? They’re finally starting to look like a team.
You: Let’s stay focused. I don’t want to waste too much time.
MS: Alright, alright. Straight to business. I respect that. But seriously, thanks for having me. When I got the invite, I was hyped. People say some mean stuff about me, and I’m here to set the record straight.
You: Let’s get into it. Who exactly are you?
MS: Good question. I go by Multiple Sclerosis, but you can call me MS. I’m like a glitch in the matrix of your nervous system. A surprise guest who never RSVPs, but overstays my welcome. I slow down your signals, confuse your brain, throw off your coordination, basically I make life spicy.
And no two people experience me the same. I like to keep things fresh. Predictability is boring.
You: Why do you keep messing with me?
MS: Messing? Nah, I prefer “remixing.” Some days I trip you up, other days I drain your energy like a phone on 2% running ten apps at once. I don’t mean to ruin your vibe. I just…exist. And unfortunately, your body is my playground.
You: Why can’t you just leave me alone?
MS: If only it worked that way. I’m a permanent tenant, bro. Treatments, diets, rest—those things slow me down, but I’m not packing my bags. Think of me like bad Wi-Fi: sometimes strong, sometimes weak, always lingering.
You: What do you want from me?
MS: I don’t want anything, I just am. But if I had to say something? A little acknowledgment. Maybe even a grudging respect. I like it when you fight me. It keeps things interesting. And listen, I’ve seen you get tripped up by me more times than I can count. That fall in the living room? Comedy gold. Your wife caught my good side in that photo.
You’re strong, man. You stay on that universe-and-God stuff. It’s cute. I kinda hope it helps you. No lie.
I’ve fallen and I don’t wanna get up.
You: Is there anything I can do to shut you up?
MS: Oof, tough crowd. Alright, I shouldn’t tell you this, but… yeah. You can weaken my grip. Stay active (even when I make you feel like a 200-lb sandbag), eat right, manage stress, and listen to your body. Oh, and humor? Kills me. Every time you laugh, I lose some power. Your jokes mess with my algorithm.
You got this weird way of handling me—like turning my chaos into poetry. I don’t like it, but I respect it.
You: So, you’re saying I can’t get rid of you, but I can learn to live with you?
MS: Bingo. We’re stuck together, hombre. Like it or not, we’re lifelong roommates. But here’s the twist, you don’t have to let me run the place. You can still chase your dreams, love your people, live your life. I’ll keep throwing curveballs, sure, but man, I’ve seen you hit some home runs. And let me just say when you meditate like I’m not even in the room? That’s wild. I mean, I’m right there messing with your nerves, and you’re floating in peace like I don’t exist. And vacations? Woo! You should see your nervous system when you get Uhthoff’s phenomenon. You start overheating, heart racing, and thinking it’s a relapse—nope, just me reminding you that I’m still around. You really gotta learn to relax, bro.
You: Alright, MS. I hear you. But just so you know I’m not going down without a fight.
MS: Oh, I never doubted that. You’ve always been one of the stubborn ones. Gotta say I respect that.
You: Why do you show up differently in different people?
MS: Because I’m complicated, obviously. I’m the remix artist of neurological diseases. Some folks get tingling and numbness, others feel like they’re walking in wet cement. I bring heat for some, freezing cold for others. Brain fog? That’s my abstract art piece. But my favorite trick? Emotional disruption. anxiety, depression, mood swings—you name it. Mental health is where I do some of my best work. You know that one well, Jon. I’ve seen you pace rooms and avoid eye contact with your own feelings. Yeah, I know what’s up.
How you doing?..I’m just here
You: Why do you make me so tired even when I’ve done nothing?
MS: Ah, fatigue my signature move. The Hulk Hogan leg drop of neurology. See, your nerves are like wires, and I mess with their insulation—the myelin. So now your brain has to scream every signal twice as loud just to make your body move. That takes energy. Lots of it. That “nothing” you did? Yeah, it cost your nervous system everything. You call it exhaustion, I call it my masterpiece. Oh, and those naps your wife tells you to take? You should listen. She’s smarter than both of us.
You: Why does my body feel like it doesn’t belong to me sometimes?
MS: Ooh, I love that one. Thats a good question. Sometimes I make your hand drop things out of nowhere. Other times, I crank up your internal thermostat until you feel like you’re melting on a mild spring day. Or I make your legs wobble like a newborn deer. I scramble your signals, touch, temperature, motion, so nothing feels quite right. It’s like trying to dance to music that’s out of sync. Hilarious for me. Less so for you.
You: Do you ever take a break?
MS: Sure I call it remission. That’s me stepping back to let you breathe a little… just enough to get your hope up. Then BAM, I remind you I’m still in charge. It’s the long con, baby. Nothing personal. Just… strategy.
You: Why do doctors still not fully understand you?
MS: Because I’m slippery. I don’t play by the same rules twice. I show up differently in every MRI, every spinal tap, every blood test. I’m like a neurological Houdini. Even top neurologists are like, “What’s this guy’s deal?” I confuse machines and humans. But hey maybe one day, AI or some medical genius will finally figure me out. Until then, I stay unpredictable.
You: What’s one thing you didn’t expect from me?
MS: Honestly? How much fight you’ve got. I’ve hit you with fatigue, balance issues, speech glitches, brain fog but you stillshow up. Still laugh. Still write blogs like this one. I underestimated you. Now I’m stuck with a warrior. Which is… inconvenient. Also, don’t think I didn’t notice that time you fell trying to take off your sweater. Your wife laughed way too hard. I kind of enjoyed it.
You: What do you do when I laugh at you? When I keep going? When I love in spite of you?
MS: I… glitch. I stutter. I unravel just a little. Because when you laugh at me, you steal my thunder. When you keep going, you make me feel irrelevant. And when you love in spite of me? That’s when I know I’m losing. You’re not just surviving you’re winning.
You: If I ignore you, will you go away?
MS: Pfffft! I wish. You can’t ignore me forever, but you can decide how much space I get. I might be here for the long haul, but I don’t have to be the one running the show. That’s all on you.
You: What were you before you showed up in my life? Were you always lurking?
MS: I was just potential. Hiding in your DNA like a plot twist waiting for its cue. You probably walked past me a hundred times before I said hello. I was quiet… until I wasn’t.
You: Do you ever feel guilty about what you do to people?
MS: Guilty? C’mon. That’s a human thing. I’m more… mechanical. I don’t feel pain, or remorse. But sometimes, when you cry and still choose to laugh? Yeah. That messes with my programming. I don’t know what that feeling is… but I don’t like it.
You: Why do you love surprises so much? Couldn’t you just send a calendar invite?
MS: Where’s the drama in predictability? I’m jazz, baby. Chaotic, unplanned, but always present. Besides, if I told you what day I was coming, you’d plan around me. And I hate being ignored.
You: Have you ever met someone you couldn’t break?
MS: Way more than I’d like to admit. You humans are annoyingly resilient. I bend bones, I scramble signals, I snatch energy—and some of you still stand tall. You adapt. You evolve. Honestly? It’s exhausting. For me.
Enough about me, what do you think of me?
I am from BK all day.
MS: Alright, alright… enough about me. I’ve done all the talking here, and if you know me, you know I love the sound of my own disruptions. But now I’ve got some questions for you, Jonathan.
You walk around like nothing’s bothering you, but I know better. I live in your nervous system, remember? I see you. So, tell me…
Why haven’t you given up on me yet? Most people would’ve crumbled by now.
You: Because I’m a warrior, and warriors don’t crumble. I bend, I crack, I even curse into my pillow when you catch me slipping. But I don’t fold. I know this relationship between us is going to get messier over time. Toxic, even. But I won’t give you the satisfaction of watching me quit. I’m built too tough. Brooklyn raised, L.E.S. polished. That’s a lethal combo, even for you.
MS: Touché. How do you still laugh when I’m clearly trying to steal your joy?
You: Because joy doesn’t come from perfect balance or endless energy it comes from perspective. You might trip me up, but you can’t touch the punchline. You ever try to be depressed while cracking jokes about peeing on yourself in public? It’s damn near impossible. Laughter is my rebellion. And trust me I have range.
MS: You are something else. What do you tell people who can’t see me but still question your pain?
You: Depends who’s asking. If I don’t like them much, I tell them my disease is contagious and to keep their distance. If I’m feeling patient, I say: “Just because you can’t see the storm doesn’t mean the house isn’t shaking.” Invisible doesn’t mean imaginary. And honestly? If I had a dollar for every sideways glance I’ve gotten, I’d have a personal chef, a private driver, and a therapist just to keep me from slapping people. I’m kidding. (Sort of.) I already have a therapist. She’s dope.
MS: You’re funny. I don’t like that. Okay so does it bother you that I’ve changed how you move and think… sometimes even how you speak?
You: Yes. At first, I fought it with disbelief. I grieved my steps. I chased down words you stole from my mouth. I hated how simple things felt foreign. But eventually, I adapted. Not because I wanted to, but because life moves on, and I refused to stay stuck while you played dress-up in my nervous system. Funny thing is, I think deeper now. I speak slower, but with more weight. You didn’t break me—you rewired me. You gave me no choice but to transform.
MS: Hmm. Noted. You really out here flipping my chaos into character development. Let me ask you this, when I knock you down, what gets you back up?
You: First of all, let’s not pretend like you’re subtle with those knockdowns. But yeah, I’ll tell you the truth. It’s love. You’re up against the love of a wife who sees her strong man get weak, but never backs away. You’re up against the laughter of my kids, whose lives I get to witness from the front row as they grow into beautiful humans. You’re up against my stubborn Brooklyn blood and Lower East Side grit. You’re up against faith that whispers, “Even this is part of the plan.” So yeah, bring your best shot. Just know I’m built for the long game.
Family softens the blow for me.
MS: Wow. Challenge accepted, Mister. Be honest are you scared of me? Or more afraid of what I can’t take from you?
You: In the beginning? Yeah, I was terrified. I thought you were a death sentence in disguise. I feared the falls, the forgetfulness, the looks of pity in corporate boardrooms, friends and family. But now? I’m more afraid of dying without really living with you in the picture. You’ll take a lot from me, I’ve accepted that. But you don’t get to touch my purpose. You don’t get to dim my voice. You sure as hell don’t get to block my view of God in the wreckage. That’s off-limits.
MS: Damn. Okay… do you ever wish we never met? Or have I become some weird, unwanted teacher in your life story?
You: Both. I hated you—still do some days. But I also get it now. Even enemies can teach. You slowed my body, but sharpened my soul. You made every sunrise feel like a trophy. So yeah you’re that uninvited teacher no one likes, but who ends up changing everything. And me? I’m the student who showed up anyway, took notes, and still plans to pass this class with honors.
Photo Credit: Jay
MS: Wow. This interview’s been… enlightening. I didn’t expect all this. You seem like a good dude. I was designed to disrupt to cloud your thoughts, steal your steps, poke holes in your peace. But somehow, you turned my chaos into meaning. You turned my attacks into metaphors. You son of a bitch you. I’ve watched you cry in silence. I’ve seen you laugh through pain. I’ve watched you pray… or meditate, or whatever you call it in the dark. You love louder than my noise. I may never leave you, but you’re not living with me. You’re living in spite of me. And that, my friend, makes you dangerous. Now, if that’s all for today, I’ve got other lives to interrupt, so I must leave now.
You: Hold on, hold on, I get the final word. You’re right. I didn’t choose you. You arrived like a storm with no warning, no apology. But I’ve learned to breathe in the rain. I’ve learned to dance with the dizziness. You took a lot. But I took it back in strength, in grit, in faith stitched into every cell that still fights. You’ll keep trying. I’ll keep rising. And every time I do, remember this:
You are a condition. I am a soul. And souls don’t quit. I would tell you to have a good day, but I couldn’t care less. By-eee!!
Final Thoughts.
If you’ve made it this far thank you. This wasn’t your typical blog post, and neither is living with MS your typical experience. Whether you’re someone battling this condition, loving someone who is, or simply trying to understand it better I hope this conversation gave you a deeper look into what it feels like to live with an invisible, unpredictable guest.
This post wasn’t written to make you feel sorry for anyone. It was written to make you see someone. Maybe yourself. Maybe a friend. Maybe the strength that often gets hidden behind fatigue, brain fog, and humor.
MS may be a part of my story, but it doesn’t get to write the ending. Neither does your pain. Or your diagnosis. Or your doubt.
The truth is, we all have something we’re living in spite of. And if you’re still showing up laughing, loving, stumbling forward with tired legs and a strong heart then you’re not just surviving…
I have to admit, when I first thought about writing a blog, I was nervous. I was basically sending out an open invitation for criticism and opinions from others—like setting up a dunk tank at a clown convention. And let’s be honest, this planet is filled with a whole lot of colorful characters—some ugly, some warm, loving, and genuine, and some who seem like they were put here just to test your patience. But in the end, I hope to connect with people who are just like me, people who can relate in some way to my journey.
Now, I love to talk (to the right people—because let’s face it, most people just drain your soul). But I never liked typing or writing essays in school. Yet, here I am, doing exactly that. Writing has become a tool for self-discovery, healing, and making sense of my journey with Multiple Sclerosis. Who knew that my iPhone’s Notes app would turn into my personal therapist? And let me tell you, it’s way cheaper than an actual therapist, though it occasionally crashes just to keep me humble. Through this practice, I’ve started uncovering the person I’ve always been. I gather pictures to stamp moments in time, realizing that the best of my todays will eventually be the worst of my tomorrows. It’s like watching old videos of yourself dancing—you thought you were killing it at the time, but hindsight is a cruel, cruel judge. When I look back at these posts, I see a guy who is pushing through life the best way he knows how. The suffering transforms into self-discovery—or at least a really solid excuse to stay in bed longer.
I often spend hours wondering what my life would be like if I weren’t sick with MS. Would I be a better dad, husband, or friend? Would I be a more loyal employee? What new injury would I have gotten from the gym? (Because let’s be real, I was never built for CrossFit-level heroics.) These thoughts cycle through my mind now and then like a bad infomercial—”But wait, there’s more existential dread!” Over time, my perspective on life has shifted. I sometimes see my illness as a bizarre kind of blessing—a test from the universe, or God if you believe. It sounds crazy, right? To just drop your hands and let MS throw haymakers at you, each punch taking a little bit more of yourself. And while MS isn’t a “death sentence,” I still treat it as if, at any moment, my vision, limbs, bladder, or lungs could give out for good—like a used car that keeps making that “I’m about to die” noise but somehow still gets you to work.
But I call this a blessing because it has given me a perspective I never would have had otherwise. I’ve become infinitely patient, understanding that the day will come when my health reaches critical mass. I don’t want it to happen, but I know it’s inevitable—it’s part of the MS journey. They say, “The best is yet to come,” but for me, it sometimes feels like “the worst is yet to come.” And hey, I like a good plot twist, just not when I’m the main character.
The first time I mentioned my feelings about MS was probably on a social media platform. I can’t remember exactly, but I do remember how I felt after writing about my diagnosis. I felt lighter, calmer—but not quite accepting of it yet. I was upset and sad, but I figured if people read my words, maybe they wouldn’t ask me about it when they saw me—because, let’s be real, small talk about chronic illness is a social landmine. “Hey, how are you?” Do you want the real answer or the ‘I’m fine’ package? That’s one main reason I don’t like to talk about it.
I started publicly journaling my journey so I could leave something behind in this world. I even have a few podcast recordings my family can listen to when I eventually retire this meat suit. Looking back at my posts, I see a completely different person from who I used to be. I’m a warrior—not with a spear, but with resilience as my weapon, a shield of positivity, and a grenade brought to you by humor. Its radius spreads distortion and love in equal measure. And if that’s not a way to fight back, I don’t know what is.
So here I am, documenting my life, cracking jokes, dodging metaphorical punches, and hoping that one day, all this nonsense will make perfect sense. Or at least get a few laughs.
Rethinking
The first time I mentioned my feelings about MS was probably on a social media platform. I can’t remember exactly, but I do remember how I felt after writing about my diagnosis. I felt lighter, calmer—but not quite accepting of it yet. I was upset and sad, but I figured if people read my words, maybe they wouldn’t ask me about it when they saw me—because, let’s be real, small talk about chronic illness is a social landmine. “Hey, how are you?” Do you want the real answer or the ‘I’m fine’ package? That’s one main reason I don’t like to talk about it.
I started publicly journaling my journey so I could leave something behind in this world. I even have a few podcast recordings my family can listen to when I eventually retire this meat suit. Through these posts, I see a completely different guy from who I used to be. I’m a warrior—not with a spear, but with resilience as my weapon, a shield of positivity, and a grenade brought to you by humor. Its radius spreads distortion and love in equal measure. Sometimes it’s just enough to make people uncomfortable, which, let’s be honest, is half the fun.
I never expected to find strength in writing, but here I am, documenting my life, cracking jokes, dodging metaphorical punches, and hoping that one day, all this nonsense will make perfect sense. Or at the very least, confuse and entertain people in equal measure. And if that’s not a legacy, I don’t know what is.
If I’ve said it twice, I must be proud—writing has helped soften the suffering. When I re-read some of these posts, I notice how much has changed—not just in my disease but in my outlook. And you know what? My perspective on myself hasn’t really changed. I love myself. Sh*t, I’ve got the biggest crush on myself. I just wish I loved myself enough to get stronger. Which leaves me with questions—if I worked out every day, would I have a fighting chance? Would I walk again? Probably not. Besides the serotonin rush and that feel-good medicine, why am I still exercising? Maybe just to see if it makes a difference, even by a little bit.
The Role of Writing my Journey
Writing has helped me rediscover pieces of myself that I thought were lost—like old receipts in a winter coat. I never thought I’d have a disease that would challenge not just my body but my mind. Honestly, I didn’t think I could handle MS. But here’s the thing—I’ve learned that there’s nothing it can take from me that will break me. Not yet, anyway. As new symptoms arise, and the old ones get worse, I’ll always stay aware, always stay thankful, and always make the most of every day. I never imagined that putting words together for a blog would sound so much better than the chaos bouncing around in my ADHD-powered, 4K in 3D surround-sound brain.
For those who matter to me they just need a nod that I’m doing okay, or maybe they need to have a talk and leave with a little inspiration. I’m no scholar, but I have life experience. That’s why I write—hoping that maybe, just maybe, something I say will spark a change in someone, whether in themselves or in this world, and with the latter this world needs a healing.
The Power of My Words in Healing
Writing is therapy for me, plain and simple. When I look back at my public blogs versus my private journaling that I do, there’s a big difference. My private writings are raw—full of the unfiltered rage and frustration that come with a relentless, incurable disease. In private, I yell, I cry, I let it all out. What are those feelings toward MS in my journal? Let’s just say if MS were a person, I’d be the stepkid and MS would be my mom’s angry, abusive, unemployed boyfriend. It’s unapologetic. I hate MS. I hate that I’m in my 40s stuck sitting down, watching life’s biggest moments from the sidelines, wishing for a cure that would put me back in the game for my fourth quarter.
This here is therapeutic. It’s either this or video games, and let’s be real, video games bring the calm way faster than sitting in a lotus position for 30 minutes. Well I can’t sit in the lotus position but you get what I mean. But through all this writing—whether for myself or for those who care—I gain perspective. I get insight into who the hell Jonathan really is. Because, honestly, who the hell is this guy? I hadn’t even met him until MS came barging through the door like an unwelcome houseguest. But here we are. Writing. Reflecting. Figuring it all out one page at a time.
The Intersection of Writing and Spirituality
Growing up in Manhattan’s Lower East Side, and later in Brooklyn, it was nearly impossible not to get into some kind of trouble. Yet, for reasons beyond my understanding, I always managed to dodge the kind of consequences that could have landed me in jail. My best friend and I were like two amateur magicians— always slipping away just in time. Looking back, I realize that some unseen force was watching over me, nudging me, keeping me from stepping too far into the abyss.
I never talked much about spirituality growing up, but my best friend’s mom recently told me I had always been a spiritual boy. Maybe that’s why I can accept my illness with a little more ease—because I believe this is what G.U.S. (God, Universe, Spirit) wants me to experience in this lifetime. Maybe, before I even got here, before I was Jonathan, I chose this path. Heavy stuff, I know—but that’s a conversation for another time, maybe a podcast where I can really go deep.
Writing isn’t just about MS for me. It’s about grounding myself, about documenting not just my struggles, but the thing that keeps me centered. If I’m going to put it all out there, I want you to know who I really am. And who am I? Just that…. absolute I AM. Nothing more, nothing less.
I like to think these words aren’t just mine, but something bigger flowing through me. The act of writing, to me, is like stepping into a stream—I don’t create the current, I just wade into it. Maybe, just maybe, the messenger is the message. Inspiration comes when you listen, and words become a bridge between the seen and unseen. Writing, for me, is meditation—it’s my way of having a conversation with the universe, of tuning into the whisper behind the noise, the quiet guidance beneath the chaos.
Some people pray, some people chant, some people sit in silence. I write. And in that process, I discover that I am not just the storyteller but also the story. I am both the question and the answer. And maybe, when I let go of the need to define or control it all, I realize that everything—every struggle, every moment of grace, every laugh, every tear—is exactly as it should be. I write to remind myself of that. I write to remember who I really am.
Me Myself, and MS 