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.
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.
I want to take a moment to express my love for you and to thank you for your unwavering support. This blog post is dedicated to each of you. To those who understand the journey of living with challenges. Your presence means the world to me.
I can’t be stop…yet
First, I must apologize for the delay in my posts. Life has thrown some challenges my way over the past few months, and staying consistent with my writing has proven difficult. I assure you this wasn’t due to laziness or fatigue, but rather the ongoing battle with multiple sclerosis. October has been tough, and even November has not spared me its trials. There are days I long for nothing more than to stay in bed, playing video games or reading, rather than facing the world.
This past month has been a testament to the struggles of daily life. As my condition progresses, I find myself reflecting on my “last times” like the last time I walked into a store or sat carefree in a movie theater. Each outing becomes a conscious effort as I navigate these hurdles. Even if it takes me 15 minutes to walk to my car, I remain determined to tackle these barriers head-on. I often remind my wife that I will keep pushing myself until I can’t anymore, regardless of how I appear in the process. Yes, I do use a wheelchair when absolutely necessary; it allows me to take part in life more fully, something that’s crucial for anyone living with MS.
The hardest lesson for me has been acceptance. It took nearly two years to reach a semblance of peace with my situation, yet it does not mean I have to love it. I despise the struggles and the unpredictability of my body. I wish things were easier, that I could avoid the frustrations that come with falling especially when it’s unexpected, quick, or painfully slow.
Keep it moving
I’ve found myself in a tricky spot lately, where the monotony of each day feels like the film “Groundhog Day.” The routine is predictable: wake up, work, rest, and repeat. It’s a struggle, but I try to infuse moments of new experiences to stave off the threat of depression. I immerse myself in learning, listening to podcasts, and binge watching shows—currently, I’m hooked on “Yellowstone.” Watching it makes me dream of living the cowboy life, albeit in my wheelchair!
Every challenge I face is just that a challenge. One of the most daunting obstacles is making it to work. I must wake up extra early and prepare myself, hoping to regain some energy along the way. My persistent battle with “Mr. Stairs” remains an uphill challenge literally. Climbing stairs feels like scaling Mount Everest, and I often feel defeated at the top.
I won’t sugarcoat it; pushing through my symptoms to uphold my job responsibilities is a daily battle. When I first started my job seven years ago, I felt like just another number. Now, I feel as though there’s a target on my back. My wheelchair can be a lonely parade it’s a symbol of my fight for a cure. Finding effective accommodations has been a struggle, and getting through a traditional workplace has had its hurdles. I know that a hybrid or remote work situation would be ideal, yet navigating my emotions while keeping them in check is a delicate dance I have to perform daily.
Wherever I gotta go for a good meal, I will find it.
When I step outside, I sometimes find it hard to connect with those who don’t understand my journey. Insensitive questions can be frustrating, especially when people offer unsolicited advice about my condition. Despite these moments, I try to remain grounded and focus on gratitude. Those who know me often speak kindly, but the imposter syndrome creeps in, making it hard for me to accept their praise. I recognize my flaws and my past struggles, and sometimes I feel trapped by them.
As I wrap up this post, I want to remind you not to give up on yourself. Life moves forward, regardless of our struggles. So, my advice is simple: find your flow, dance with life, or even just take small steps. Life, with all its challenges, offers lessons that are only yours to learn. It’s up to you to decide whether you will continue to fight or become a quitter in a program designed for resilience.
Thank you for being on this journey with me. Let’s face the challenges together!
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.
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 everendured 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.
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.
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.
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.
This week brought a touch of adventure and a sprinkle of excitement. On Friday, I ventured to the MS Center in Manhattan for a series of tests to determine if I qualify for a new drug trial. This trial is for a promising medication called Frexalimab. Over the next six months, I’ll be visiting the hospital once a month for an infusion. Whether I receive the actual medication or a placebo will remain a mystery, but if I’m fortunate enough to be included, it could lead to a four-year commitment to the study.
I’ve never been part of a test trial before, so you can imagine my excitement. Being part of something that might help other MS warriors is exhilarating. Frexalimab was designed for relapsing MS and has shown great results in slowing down the progress of this uninvited disease. Researchers hope it can do the same for secondary progressive MS.
My Friday was packed with a slew of tests—blood work, urine samples, a physical exam, ECG, mental health evaluations, and an MRI with and without contrast. They really wanted to know me inside and out. They asked if I was suicidal or depressed. The questions seemed silly to me because I love my life and everything in it. They also wanted to know every single medication I was on. The list was about nine items long, including my holistic consumption of marijuana. Just for the record, I don’t smoke it recreationally; I use it to calm myself and help me sleep. By the end of our six-hour visit, my wife and I were running on fumes, with our social batteries depleted to 10%. We didn’t talk to each other all the way home, but that didn’t stop other people from talking to us. I didn’t engage politely.
How do I feel about this journey? Well, let me start by saying that my current treatment, Ocrevus, hasn’t been the beacon of hope I envisioned. Limited to only two medications due to being JCV positive, this trial could be a game-changer for those of us with secondary progressive multiple sclerosis. I’ve been on the “O-juice” since 2022, and my symptoms continue to worsen. So, I’m more than willing to be a guinea pig for the greater good of the MS community. The risks? Blood clots and potential death, but I refuse to let fear dictate my life.
Date Night and Final Thoughts
On a lighter note, my wife and I enjoyed a delightful “date night” on Saturday afternoon. I usually get anxious and stressed about going out. I worry about the temperature because I can’t tolerate the heat. That’s an MS symptom I wish I didn’t have because I love to be energized by the sun. Now a days get renders me useless if I am out for too long. I also get anxious about going to new places, wondering what obstacles I’ll encounter. If I’m going somewhere new, I get stressed. When my stress kicks in, my legs become spaghetti, and I forget how to walk. But then I remember I have my electronic wheelchair with me. This makes getting around a breeze for me and I have the freedom to get around.
I love going out with my wife when it’s just the two of us. So, we went to watch “Bad Boys” at the AMC theater. Now that I use a wheelchair, I get to sit all the way in the back with all the others. The back of the theater has always been the best seat in the house. It was an exciting outing, especially because I got to show off my new wheelchair. The compliments it garnered made us feel our purchase was indeed a great one. My wife and I felt a bit out of touch with modern conveniences at the theater when we ordered our drinks and snacks through a kiosk instead of a human. I’m not complaining about the change, but I do prefer human interaction. Navigating the kiosk felt like using the self-checkout at the grocery store—we weren’t quite ready for it! I couldn’t shake the feeling that I was getting old and that the world is changing so fast. But by the end of the afternoon, I only crashed into the wall once, which is progress! I usually average double that on a good day.
I always say that when people see me cruising in my wheelchair, they react in one of three ways:
They smile at me and look for ways to help.
They stare, checking out my cool wheels.
Or they see me walking with my hiking poles and can’t quite GET OUT OF MY WAY!!!
I’ll leave you with this thought: I often face hard days and nights, plagued by numerous health issues. But rather than being perpetually angry or frustrated, I wake up each day ready to see what new challenge wants to tango with me. I’m determined not to let MS ruin my day. Complaining is exhausting, and I choose to save my energy for better things. My complaints are often silent, with my beautiful wife being the only one who hears them. She would probably say I don’t complain much, and for that, I’m grateful.
Me Myself, and MS 