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.
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.
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.
Me Myself, and MS 