It’s not casual. It’s not polite. It’s emotional. I love it like a fool who knows better. My favorite is iced coffee with oat milk, a little honey, and just a tiny bit of creamer. That’s it. Cold, sweet, and smooth. Every sip makes me happy, even while my body plots against me.
Living with multiple sclerosis means almost every choice comes with conditions. Coffee is one of them. It helps me focus, gives me energy, and makes mornings less miserable. But the trade-off? It sends my bladder into panic mode. Some days, it feels like I’m going to piss on myself. And sometimes, I do. That’s the truth no one puts on inspirational posters.
Still, I drink it.
Every morning. Without fail.
Oh GOD please NO! I’m almost there.
It’s part of my routine, my mental ignition switch. Once I take that first sip, the fog that MS brings starts to lift. I put on my headphones, hit play on my endless playlist of over 250 hours of music, and I can finally think. My brain starts connecting again. I feel sharper, more capable, more me.
That’s the magic part of caffeine. Studies show it can boost alertness, concentration, and short-term memory. It gives your central nervous system a small jolt, helping you stay awake and focused. For many people with MS, that little spark can make a big difference when fatigue feels like a full-time job.
But there’s the other side. The one nobody romanticizes.
Caffeine is a diuretic. It makes you pee more. For people with MS, that can be a problem, especially if you already deal with bladder urgency or incontinence. It can also upset your stomach or make anxiety worse if you have a lot of it. And if you drink it too late in the day, it can wreck your sleep.
It’s a beautiful morning!!
So why do I still do it? Because it helps me start the day. Because it’s one of the few pleasures that still feels like mine. Because the smell of coffee in the morning makes me feel human before the rest of the world starts demanding things.
I know what the experts say. Keep it under 400 milligrams a day. Avoid it if it triggers symptoms. Listen to your body. And I do. But my relationship with caffeine isn’t about perfection. It’s about balance. Some days I win. Some days I lose. But most days, I get through the morning feeling awake and present, and that’s worth it.
Oh look a Dunkin Donuts on the corner!
Yes, my bladder might betray me. And yes, I can practically hear myself getting fat from the oat milk and honey. But that first sip is peace. It’s clarity. It’s control in a body that doesn’t always cooperate.
So no, caffeine and MS don’t make the healthiest couple. But like every messy relationship worth having, we make it work.
Me not being able to sleep at night.
Author’s Note:
Living with MS means choosing your battles. Some days, it’s walking. Some days, it’s bladder control. And some days, it’s deciding whether coffee is worth the risk. For me, it usually is. Because life with MS isn’t about perfection. It’s about finding small joys in the middle of the mess. This story is one of mine.
Living with multiple sclerosis teaches you to recognize certain buzzwords. You start to hear them so often they become background noise: “New treatment option!” “Promising trial results!” “Exciting breakthrough just around the corner!”
If you’re in the relapse-remitting stage, those words sound like a lifeline. A new infusion, a fresh pill, something to shove the beast back into its cage, at least for a while.
But the moment that diagnosis shifts to secondary progressive MS, the soundtrack changes. The anthem of resilience fades out, and what’s left feels like elevator music on endless repeat. That’s when the words you never forget come crashing in:
“There’s less we can do now.”
Translation? Good luck out there
Welcome to Treatment Limbo
With SPMS, the treatment menu shrinks. Some drugs you once relied on get crossed off. Others aren’t even recommended anymore. Clinical trials? Suddenly, you don’t fit the criteria.
And it makes you wonder: who does fit the criteria? Olympic athletes with a touch of MS that clears up after a nap? Because it sure doesn’t seem like they’re looking for people like me.
Meanwhile, the news cycle parades shiny headlines: “Scientists discover potential MS breakthrough!” You want to cheer. You want to believe. And then comes the fine print: “Results apply only to early relapse-remitting patients under age 25 who have never sneezed on a Tuesday.”
So, once again, it’s another party I’m not invited to.
The Weight of Waiting
Hope doesn’t die with SPMS, but it turns into a scarce resource. You learn not to get too excited about bold announcements, because nine times out of ten, SPMS patients aren’t even mentioned.
It’s like standing outside a candy shop, watching everyone else sample treats, while the shopkeeper tells you: “Maybe next decade for you.” Eventually, you stop pressing your face to the glass, not because you’ve stopped craving it, but because the cold feels humiliating.
But still, you don’t stop hoping. You just fold it up and keep it in your pocket, careful not to let it break.
Everyday Decisions in Limbo
Treatment limbo isn’t just about medication. It creeps into everyday choices:
• Should I spend money and energy on home modifications now, or keep waiting for the miracle cure the headlines keep promising?
• Do I risk enrolling in a dangerous trial, or protect what little stability I have left? “Possible side effects” sounds scarier when your baseline already feels like a car crash.
• Is it even worth planning five years into the future, or am I just daring fate to laugh in my face?
Living in limbo means constant mental gymnastics. And honestly, I couldn’t land a cartwheel even in middle school.
What Rarely Gets Said
Yes, science is advancing. But here’s the part you rarely see in print: behind every glossy “breakthrough” headline are people like me, waiting and wondering if this one will finally count, or if we’ll be left out again.
That’s the silence of SPMS. Not hopelessness. Not despair. Just hope left hanging in the air, suspended and untethered.
My Closing Thoughts
The hardest part of SPMS isn’t the absence of a cure. It’s the gap between what gets reported and what we actually live.
So if you’re here in this waiting room with me, welcome. There are snacks (mostly sarcasm). If you’re not, remember this: every headline about “hope for MS” doesn’t mean hope for everyone with MS.
Until then, I’ll keep rationing my hope, cracking my bad jokes, and shaking my fist at the medical fine print. Because really, if you can’t laugh at the absurdity of being excluded from the cure for the disease you actually have, then what else is left?
The path is always lit up for you. You just have to open your eyes.
Had a conversation with a friend today. Funny thing is, I was in the middle of writing a completely different blog post than the one I have for you today. But once we talked, I couldn’t shake the weight of our exchange. It felt like one of those moments you don’t want to lose to memory alone.
The truth is, I never really pictured myself writing for others to read. Putting words on paper is one thing, but letting the world peek through the window? That feels like standing exposed, naked in my truths and afraid of what people will think when they see me this way.
New phone who dis?
But here’s the part that keeps me writing anyway: I believe God places people in our path for reasons we don’t always understand. Sometimes they’re not here to teach you a lesson in the obvious sense, they’re here to remind you of who you are, and that He’s walking alongside you. I’m not the most traditional believer. Organized religion never fully spoke to me. Still, I can’t deny that certain connections run deeper than surface, brushing up against the soul in ways words barely capture.
My journey began long before multiple sclerosis came storming into my life and flipped everything upside down. Struggle, trauma, loss, self-destruction, I’ve sat with all of it. But when I sit with my friend, we don’t dwell on pain. We end up talking about gratitude, about how God moves through us and blesses us even when life feels heavy.
We are all one.
And maybe that’s the point. Maybe these people who enter our lives aren’t random at all. They’re living reminders that we’re never really walking alone.
What stayed with me after that conversation wasn’t just the words, it was the reminder that people themselves can be messages from God. We look for signs in the sky, answers in books, or some booming voice to show us the way. But more often than not, it’s the person sitting across from you, laughing with you, or even challenging you, who carries the reminder that He hasn’t gone anywhere.
My friend didn’t try to fix me or give me some profound sermon. Instead, the simplicity of their gratitude, the way they saw God moving in the everyday, reminded me that blessings don’t always wear grand clothes. Sometimes they show up in the form of a listening ear, a shared story, or a quiet moment that re-centers you.
I am Absolute.
When I think about the hardships I’ve carried struggle, illness, loss, it would be easy to let them define me. But gratitude changes the lens. It doesn’t erase the pain, but it shifts the focus. It says: yes, this happened, but look at what else happened too. Look at who walked in when you thought you were alone. Look at the way love still found you.
That’s what these connections do. They peel back the noise of life and point you straight to the truth: God is present, not just in church or holy texts, but in the people who remind you of your worth, who hold up a mirror so you can see yourself more clearly. And every time I encounter that, I feel less afraid to share my story because my story isn’t just mine. It’s a collection of all the people God has placed along the way.
A special sincere thank you to those who read my blogs, and are moved by my words. I do this not only for you but for me to leave something behind to remember me by. I love you and I hope you love me too.
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?
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 