Me Myself, and MS

Tag: travel

  • Ride as a Metaphor

    Where are you van?

    They told me the van would be here between 2:30pm and 3:00pm.  

    So, I wait, . and wait, ..waiting some more.

    A 30-minute window for a ride I’ll only need for an hour ride back home; that is if I am lucky today.  But okay, sure I play along. Soo I get ready, I went to the bathroom, packed my bag up, headphones, and even gave myself the pep talk: This afternoon, we ride, don’t matter the time they arrive.  Just be cool and patient.  And so, I roll out with empty bladder, headphone on head, and the unpredictable mood of my legs. Then there is the moment when the driver says, “we have to pick someone up, and they will be dropped off before you”. Actually, we’re taking the long way. Hope you packed patience. ” Patience!? Would that be in the AAR app. Can’t find it because there’s no button for that. No one ever told me this, but I wish they would rather than surprise me. But then again MS doesn’t give me a heads up on what kind of day I will be having today.  Just like Access-A-Ride MS does the same to me. It promises to show up one way, then takes a detour. But you gotta have patience, no?



    That’s life with MS.  A game of windows and guesses. Of showing up dressed and ready, even when you’re not sure if the ride or the strength is coming.  When I first started with AAR I used to get furious when they were late picking me up or dropping me off.  These days I’ve learned to treat waiting as a kind of spiritual practice. Not because I want to, but because I have to. The van at times might be early. Or it might ghost me altogether, leaving me explaining to someone on the phone that yes, I was outside, and no, I didn’t just imagine the whole thing. This really happens to me. I feel that the universe is babysitting me and wants to see my reaction on these incidents of chaos with AAR. If i do bad on these test they will just give me more days like this. BUT if I am unbothered by the situation, then this is where the magic happens. All chaos becomes peace and order for me. Hard to achieve but I like it there. Most the time I pass the test with a 65, but lately I have been getting a gold star. A 100, A++ for sure.


    This is how life with MS works. You get windows of time, moments when your body shows up and says, Let’s go!  Then other times when it just puts up a “Closed for Maintenance” sign and ghosts you like most of my job interviews.  Access-A-Ride is like that too. You never quite know what you’re gonna get. It could be a courteous driver with good music and soft turns… or it could be a van ride from Dante’s ninth circle of potholes, with a driver who seems to have trained at the Fast & Furious Academy.  I had one guy who drove like this, all while having lunch, holding a beverage in one hand, talking on face time with his adolescent son, while doing 45 MPH, to only be greeted by the stop sign on every corner…. Did I miss something, oh yes he had the in car stereo on blast.  I thought I was going to die in this van.  I texted my wife a picture, and a video of what was happening in the event she had to inform someone my cause of death.   See below if you think I would make this up.

    Did I leave something out? Oh yes, Go New York, Go New York, Go!

    The driver is a story on it’s own.  Sometimes I ride alone. Other times, I share the van with fellow travelers, people with canes, scooters, invisible wounds. We don’t always talk, but there’s a silent nod we give each other. A “you too?” A kind of sacred knowing. Some riders are cranky, some talk a lot, others think they know more than the driver, and they are arguing about the best routes to get home.  I have to say 10 times out of 10 the customer is always right about getting home quicker than the Vans built in GPS.


    One day, I rode with a woman in her 70s. Cane in hand, eyes full of stories. She looked at me and said, “I used to dance. Now I ride.”
    Without missing a beat, I said, “Same. Except I never really danced that well to begin with.”
    She laughed. “Then you better keep riding with rhythm, baby.”  Touché.
    She didn’t see my ear buds plugged into my ear that day.  I was already plugged into “Now that’s what I call music 90s” and I was dancing like Christopher Walkens in the Fat Boy Slim Video “Weapon of Choice”, I love that Video!

    MS and Access-A-Ride make quite the duo, like a dysfunctional buddy cop film. One slows you down, the other makes you wait. They both keep you humble if you allow yourself to be humbled. 
    Still, there’s something sacred about the movement. The ramp lowers, I roll in, get strapped down, and just for a moment, I’m going somewhere. I’m not stuck. I’m not homebound. I’m in motion, and that counts. But you also learn that motion any motion, is a kind of defiance. A quiet refusal to be parked indefinitely.  Every bump in the road, every turn, every awkward lift of the hydraulic ramp feels like a metaphor for my life with this disease: not smooth, not simple, not what I ordered, but still moving forward.

    Ramp go down the hole, down the hole!

    Sometimes I wish Access-A-Ride came with a DJ. Something to match the rhythm of the bumps on Broadway Ave. Maybe Ralph McDaniels narrating the trip like it’s Video Music Box:  “Coming up next, a slow crawl through Bushwick with your host, life with a chronic illness.” Brooklyn teaches you patience, even when you don’t want to learn it. MS doubles down on that lesson like a stubborn uncle at the cookout who won’t stop telling you how things were better in the ’80s. Ohh wait that’s me.  I am that guy for my family.  But since we on the topic.  Yes rent was $600 and Coney Island wasn’t overrun by tourists.  And speaking of patience when you’re sitting in that van for 90 minutes for a ride that would take your cousin 15 minutes in his beat up 93 Dodge Spirit, you start to question things.

    Is this a ride? Or a spiritual boot camp with seatbelts?

    Are we taking the scenic route, or did we just get lost in Queens again?

    Access-A-Ride has taken me places Google Maps didn’t even know existed.  One time, I asked the driver, “Where we headed next?”  He shrugged and said, “The GPS knows. I don’t.” “It’s the boss.”  “This is your boss I said”!!??… are we trusting technology with no backup plan? My whole nervous system is already unreliable we don’t need navigation drama too!

    But I digress. There’s a weird kind of gratitude that grows on you when you ride these streets long enough. You start to notice the little things:

    • The driver who waits when he sees you rolling toward the door.

    • The fellow passenger who gives you a nod that says, “Yeah, I get it.”

    • The skyline hitting just right as you cross the Williamsburg Bridge at golden hour, and for a second, your body doesn’t hurt, and your spirit feels…light.

    I love, and look forward to these moments.  That’s Brooklyn magic right there.  Philly has the same effect on me too. Even when life has you strapped in and rolling slow, you still find rhythm in the ride. You still crack a joke, still make someone laugh, still fight for your dignity in a system that doesn’t always see you. Because that’s what we do out here.  We adapt. We hustle. We wait for the van, curse under our breath, and ride anyway.  We make mobility look like rebellion.

    So yeah Access-A-Ride might not be perfect.  But it’s part of my story now. Part of my movement, literally and metaphorically.  And if you ever see a van stuck in traffic on the Jackie Robinson with a guy inside cracking jokes to himself and MS sitting next to him with a smug look… just know: That’s me.   Still riding. Still laughing (sometimes), Still Brooklyn by the way of L.E.S. (Lower East Side).
    Sometimes progress doesn’t look like crossing a finish line, it looks like catching a shared van to a doctor’s appointment, or work and being grateful the driver didn’t forget you at the curb.
    So yeah, some days I ride. Some days I get rerouted. But I’m still showing up. Still moving.
    And when people ask how I’m doing, I tell them the truth:  “I’m still riding. And that’s enough.” No one truly cares how you doing.. Thats a topic for a later date though. Any way I love you and I hope you love me too.

  • Trial Medcine Frexalimab

    Adventures in Medical Trials and Movie Date

    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.