Category: Uncategorized

My mental clock wakes me up before my real alarm gets its moment to rudely scream at me at 5am. I’ve been getting up this early for almost 25 years now. Back then I worked catering at the World Financial Center downtown, right across from where the Twin Towers once stood. Funny how the body remembers schedules longer than joy sometimes.

My eyes shut for another minute or two. I gotta do a pre-check-in first.

What hurts today?
What feels new?
Can I make it to the bathroom without pissing all over myself this fine morning?

I’m running as fast as I can with my walker. Running over anything standing in my way. Legs stiff. Right leg refusing to bend like we got beef. I’m almost there.

Hold it five more seconds, please.

Made it. Only a tiny drip on the briefs. We call that victory now.

Next mission. Feed the cats.

All three are singing in unison like a furry church choir. We got altos, sopranos, and Hendrix doing a guitar solo somewhere in the background. Between the ice maker dumping cubes and the faucet dripping into the sink, the apartment sounds like EDM recorded deep in the jungle.

Their desperate meows make me anxious. One grabs my shorts. Another gives me a little warning bite on my calf like, “Sir, the service here is terrible.” I promise them I’m moving as fast as I can.

Once the felines are fed, I debate making coffee for myself. I gotta measure the energy cost first. Sometimes a large iced coffee feels less like a beverage and more like an investment decision.

By the time I take my morning meds, I already need to sit down and rest.

Believe it or not, doing all this tricks me into thinking I’m okay. Like maybe I still got this.

That’s the lie though.

Walking back to the living room to catch up on current events, getting dressed, putting socks on, taking little breaks between each step. Socks alone feel like a CrossFit challenge designed by Satan. Then the pants. Pants take everything out of me.

Well, maybe not everything. My fingers still work enough to play a game or two.

By 5:45am, I’m spent. I wanna crawl back into bed underneath my cooling blanket and disappear for a while. Depending on which medication I take, the sleepiness hits hard. The kind where your soul starts buffering.

I kill time waiting for my ride by watching YouTube or playing video games for an hour or less.

Then comes the part that drains me mentally before the day even starts.

The descent to street level.

I got a stair lift. Sounds fancy until you realize it only handles about 75% of the journey. I still gotta manually survive five more steps. My beautiful wife goes ahead of me and assembles my wheelchair outside because there’s no space for this operation in our second-floor walk-up.

By the time I get into Access-A-Ride, I’m usually knocked out cold. An hour ride feels like five minutes because my body shuts down whenever it gets the opportunity.

Sometimes Access-A-Ride feels like unwanted stress delivered directly to your nervous system. So I say a little prayer every morning before work.

I try getting there early because Access-A-Ride loves arriving late. Or dropping you off late. Or both if the universe wants entertainment.

Once I’m at work, I don’t waste time.

I straighten things up. Make sure the pantry looks good. Snacks stocked. Beverages lined up. Milk ready for coffee. Coffee addicts are peaceful people until you interrupt the supply chain.

When everything’s in order, I reward myself with a second iced coffee and check emails.

I love my job.

There are things I don’t like, but not enough for me to leave.

By 11:30am though, I need rest. Real rest. The kind where two hours of sleep still feels like somebody forgot to charge your batteries. My tired is different. I can sleep deeply and still wake up exhausted.

Lately I’ve been forgetting things at work. Small mistakes. Stuff I should’ve caught days earlier. My manager reminds me I’ve been there almost a year and I’m still making mistakes.

I don’t take it personally.

I know it’s not all me.

MS likes attention too. It likes reminding me who really runs things around here. And it enjoys showing off sometimes.

I hate making mistakes. At my last job I was the superstar. The guy people depended on. So this version of me feels like an ego punch straight to the throat.

Am I scared of getting fired?

Hell yeah.

Losing this job would hurt our household badly. I try not to obsess over it, but the thought visits me often enough to unpack a suitcase.

There isn’t one moment where I completely forget I have MS.

I’m reminded by my mood. My energy. My weakness. My attitude. The discomfort under my skin. The urge to disconnect from stressful situations eight times out of ten.

In the beginning, the speed of all the changes scared me. Then something strange happened.

My spirit accepted it before my mind did.

This is what it is now. This is how we move. Adapt when necessary and keep going.

For a long time, I carried guilt about not doing all the things I used to do with my family. I wished for more vacations. More years in the gym with my son. Another trip to Universal Studios. A few more years at my old job.

When I got diagnosed, my first thought was, “Great. I’m gonna die slowly.”

MS isn’t a death sentence.

But it does feel like a life sentence with parole pending.

I don’t think I’m a great patient either. I could be doing more. Eating better. Exercising harder. But from what I’ve seen, nobody fully reverses this thing because they started drinking kale smoothies and doing squats twice a week.

There’s no miracle pill waiting for me.

For me, the greatest medicine is protecting my mind.

And honestly, that’s the hardest part.

I’m still human. I still deal with stress, fear, insecurity, doubt. I still obsess over feeling less productive. Less useful. Less than.

Lately I’ve realized I need to change things up a little. Life started feeling like a loop. Wake up. Survive. Repeat.

I love learning new things.

I don’t know how much MS plans on taking from me, but I refuse to exist without purpose.

Working gives me purpose even on the days I don’t wanna go.

I started thinking about taking online classes. Maybe transferring my skills into another field. Maybe learning the cannabis business.

Honestly, I wouldn’t mind being a budtender.

As somebody with a medical card, I know how important it feels when somebody actually understands what helps your body. Somebody who understands terpenes, strains, oils, edibles, flower. Somebody who listens instead of treating you like a transaction.

I love helping people.

I love creating community with people who look like me, think like me, struggle like me.

Maybe this becomes something new for me one day.

Maybe helping others becomes part of my healing too.

Maybe I finally enter a field where illness isn’t treated like an inconvenience hidden behind HR smiles and corporate motivational emails written by people named Todd or Barbara.

I try hard to keep hope alive.

Truthfully, somewhere deep inside me, things feel hopeless sometimes.

I still pray there’s a cure one day. Hell, I’d take a 50% cure if it meant I could walk to the corner store by myself and buy a turkey and Swiss sandwich and a lottery ticket like a regular guy.

Some people may think I’m tired and giving up.

That’s not what this is.

I don’t think I’m giving up.

I think I’m learning how to survive differently.

And maybe survival deserves more respect than people give it.

Because some of us wake up every morning already exhausted and still choose to participate in life anyway.

That has to count for something.

It’s been a busy few weeks for the family and I. Both of my kids are stepping into new chapters of life at the same time. My daughter graduated last week on my birthday. Honestly, I cannot think of a greater gift than watching your child cross a stage into her future while you sit there wondering where the hell time went.  I cry all the time just thinking about it.  

Now my favorite son prepares for prom, post prom party, graduation and college this fall.

The two walk the same hallway, just different color doors.

My daughter walks into adulthood with structure already waiting for her. A degree in science. A job lined up in the field of radiology. A path beginning to form and glow beneath her feet.

Then there’s my son.

Getting ready for a fresh start, in an unknown campus.
New faces.
New pressure.
New freedom.
The kind of freedom that can either build you or distract you.

Watching both of my kids has made me think about my own journey with Multiple Sclerosis.

Life keeps moving whether you feel prepared or not. One day you are opening doors with excitement.
Another day you are opening them with fear.  Sometimes you open one and find purpose.
Sometimes pain.
Sometimes reinvention.

None of us truly know what waits behind the next door.  We simply keep our hands on the steering wheel and continue forward. Some are using adaptive cruise control, and others are racing to the stop sign on every corner.

Not because we control destiny.

Because stopping in the middle of the road guarantees nothing will get discovered

The older I get, the more I realize legacy has nothing to do with money, job titles, or how many people pretend to like your blog post online.

Nobody is standing over a grave saying,

“Damn. He answered emails fast as hell.”

What matters is who you raised.

Who felt safe around you.

Who carries pieces of your spirit after you are gone.  That last sentence there is something I will love to leave behind.  I want the people who love me to see me in the tribe. And remember how dope I was.  I want you to laugh, cry, and feel that I am always with you all when this meat suite expires.  You remember that guy right there…… yeah, he was a fighter!

And somehow, while fighting a disease inside my own nervous system, my wife and I managed to raise two extraordinary human beings.  This means everything to us. 

There were days I was tired beyond explanation.

Days my body felt like it was buffering like bad WiFi in a hospital.

Days I smiled in front of my kids while privately wondering what MS was going to steal from me next.

Mobility.

Energy.

Pride.

Dignity.

The ability to walk normal without looking like I just got off the stair climber after an hour. 

But even through all my symptoms , life kept moving.  Homework still needed help.  I’m lying, I have never helped my kids ever with homework.  It isn’t because I wasn’t around. It’s because I  am not smarter than a 5th grader. 

And still bills still showed up like obsessed exes. Dinner still needed to get made.  Kids still needed advice.  And somehow between doctor appointments, stress, fear, and pretending I was not falling apart mentally, we kept building a family.

Today I watch my kids becoming adults and it’s beautiful…but if I’m being honest, it also hurts a little.

Parents do not talk about that enough.

Every graduation.

Every first apartment.

Every relationship.

Every big decision.

It’s another reminder that time is undefeated.

One minute you are teaching your daughter how to cross the street safely.

Now she has a degree and a career starting.

One minute your son is asking you for snacks every twelve minutes like a tiny unemployed landlord. And now he is chopping up breakfast, lunch or dinner for all if us.. Now he’s preparing for college and figuring out life on his own. Meanwhile I’m sitting here trying to remember why I walked into the kitchen. Life is hilarious sometimes. But beneath the jokes is grief too.

Not dark grief.

Not bad grief.

The kind that comes from loving something so deeply that watching it grow feels both rewarding and heartbreaking at the same time.

I think MS intensified that feeling for me.

When your body changes against your will, you become more aware of time.

More aware of moments.

More aware that nothing stays still forever.

So now I pay attention differently.

I sit longer with conversations.

I appreciate simple things more.

I memorize laughs.

I study memories while they are happening.

Because somewhere along this journey I realized my greatest accomplishment was never going to be perfection.

It was presence.

I was here.

Even while hurting.

Even while scared.

Even while my nervous system was acting like a drunk electrician behind the walls.

I was still here loving my family the best way I knew how.

I LOVE YOU, and I HOPE YOU LOVE ME TOO.

I love you and I hope you love me too.  I am really easing into the things I’ve been really wanting to share with everybody for some time now.  I am a lil afraid to release these blogs because I don’t want anyone to think I am not a believer or have no faith.  My beliefs are personal and odd. I feel they are aren’t new beliefs since I had MS.   It’s something that I have always felt has been with me.

The story I’m about to tell is one of the stories I don’t tell enough.   Because some won’t believe me or think what I did was against their GODs will.  Or worst, it’s not true.  

There was a time  that my wife got sick a while ago for about a year.  Doctors could not tell her exactly what she had because it looked like this but it looks like that, they will say. After some appointments my wife felt hopeless and desperate.  She felt that the only way to figure this all out is to  start a detox on her insides and out. She began eliminating certain products and focused on her diet. 

She will do water fasting, coffee enemas , then came  the juicing everyday, and eventually  got me drinking celery juice.  I didn’t even know you can get anything from celery besides the refusal to eat or drink it.  Her diet was raw, clean and hold the seasoning.  It was a very hard journey for her to go through alone.  I know my wife felt a sense of envy while I go on with my lifestyle of eating wasn’t easy to watch.  

My wife quit her business of making  design cookies.  She started to lean harder into her faith. She prayed we prayed together.  Her spirituality evolved into a bubble of love and light. She started to read again, so i started reading too. We will sometimes stay up Late and talk about religion and our theology about how this all may be connected on a micro and macro level of existence. Her beliefs were strengthening where I was still curious and learning through my wife.  Through my wife’s healing I felt like our relationship was gong to change and this is time to transform with her because why not.  My thinking at the time was I need to support my wife.  I may not  understand half the stuff she was reading and talking about, but she was talking to me and only me about it. 

It was during this time that I had sleepless nights because I had anxiety over my mortality and how I was scared of not existing anymore but of only memories. 

I had no multiple sclerosis but symptoms were starting to show up. Before I go on any further, 

I couldn’t tell this story without thanking my good friend who  helped me unknowingly sort my ego and spiritual self before I got sick.  This is a a nod to my friend “The Lettuce”,  thank you for helping on so many levels that I could not comprehend. Thank you for always being around me, building, laughing, having real talk and then more laughing. There aren’t a lot of people I can call a friend and this is because you are “my brother from another mother”. 

The universe has a way of meeting you where you at if your patient enough to listen for it.

So now that’s out of the way.  All of this new cosmic wave came in a whoosh in 2019.  That Summer I was  starting to feel a pull to be present and letting go of things that were not serving my soul.  Even my relationship with the ones I love has changed.  I was more present, calm, and super patient. 

My anxiety and constant worries were leaving me tired and always thinking .

Now that all of this backstory has been introduced and my history should explain my journey today, let’s get into how I have been after that one day of receiving the medicine that changed me. 

I first heard about this psychedelic on a show one late late night on TV call Vice.  It followed a shaman who was administrating the medicine/drug for folks who has experienced PTSD, depression, anxiety, and addiction.  These folks had these mystic experiences that lasted about 15-20 minutes.  I wouldn’t say to you that they were cured.  They came back remembering something far better.  

Living with Multiple Sclerosis has forced me to reevaluate everything I once took for granted.  My body, my mind, and the illusion that I was ever truly in control of either.

A few years ago, in the new moon of November in 2019, I was invited to take a medicine that would completely flip my reality upside down. At the time, I had no idea the effects would echo this far into my life. I didn’t understand that one experience could permanently alter the way I perceive myself, my suffering, and the world around me. That medicine didn’t give me answers…..it gave me questions. And those questions changed everything.

What followed after that night of taking this medicine was an obsessive pull toward understanding consciousness, healing, and identity. I wasn’t just looking for relief from pain; I was trying to understand why pain exists at all, and what it’s trying to teach us.

My curiosity to better understand led me to books that fundamentally reshaped how I live with MS today. And also how I perceive this journey we call life. 

Books like “How to Change Your Mind”, Michael Pollan explores how psychedelics loosen rigid mental frameworks. Living with MS, rigidity is everywhere…diagnoses, timelines, limitations, and worst case scenarios. This book helped me recognize that suffering intensifies when the mind becomes trapped in fixed narratives. MS didn’t disappear, but my relationship to it softened. I learned that flexibility of mind can exist even when the body feels unreliable.

Pihkal by Alexander Shulgin took this further. It wasn’t just about chemistry, it was about curiosity without fear. Reading it felt like permission to explore consciousness without being paranoid or weird, maybe a little bit of shame. Shame because you are given a religion to follow when you are born and I was connecting my own dots, and leaving the traditional faith that grew up knowing.  My belief’s may be odd but I wasn’t alone. 

MS had already forced my nervous system into chaos; Pihkal taught me that altered states aren’t inherently broken states. Sometimes they’re invitations to listen more carefully. 

I started to eat more cleaner and meditated nearly every day and night. Probably not as much as I Would have liked too. I read and read some more.  My thirst for answers were just filed with more and more questions 

The strange part was this: the more I read, the more it felt like remembering rather than learning. As if this knowledge wasn’t new, but buried. I began to see these books as breadcrumbs, quiet reminders from the universe pointing me back to something I had forgotten about myself.  I was relearning how I was a spiritual being having a human experience.  Maybe for some this concept is hard to really wrap your head around. But most of you have Wi-Fi,  even though you cannot see it working it still does something to help your device(s) extend its reach and gather information for you. 

The Psychedelic Renaissance and The New Science of Psychedelics helped me understand something critical: the mind and body are not separate systems. MS is a neurological condition, but it doesn’t live only in my nerves; it also lives in my emotions, my thoughts, my fears, and my sense of identity. These books validated what I already felt in my body: healing is not linear, and it is never purely physical.

Then came The Origin of Consciousness in the Breakdown of the Bicameral Mind. This book took a while for me to get through.  I had to quit mid way and hear the audio version of it.  It was a snore fest. But when I got to it, this book shattered my understanding of selfhood. It forced me to question whether the voice in my head….the one that panics about symptoms, progression, and loss is actually me. That distinction alone changed how I coexist with MS. I am not the diagnosis. I am not the fear. I am the awareness witnessing both.

Once that sat down and made itself at home I was more accepting of the bull shit that life threw at me. 

Books like Shamanism and Entheogens and the Future of Religion (which I’m still reading) spoke to something even deeper. MS stripped away the illusion that modern medicine has all the answers. These texts reminded me that humans have always sought meaning through altered states, ritual, and direct experience, not just survival, but connection. Connection to self. To community. To something larger than suffering.

These were never just intellectual exercises. They became part of my survival.

And I need to be completely honest with you here because honesty matters.

I have never said this publicly before, but if that medicine had not found me in 2019, I would not be here today. When I was diagnosed with Multiple Sclerosis in 2022, the fear alone could have destroyed me. I was terrified of becoming a burden. Terrified of losing autonomy. Terrified of what my life might become. That fear could have driven me to make a decision that would have devastated the people I love.  And shatter hearts to millions of pieces. 

I am not saying anyone should go out and seek this medicine. I am not romanticizing it. I am simply telling my truth: that this experience gave me enough distance from my own fear to survive my diagnosis.

Living with MS has taught me that healing is not about fixing what’s broken. Sometimes nothing gets fixed. Sometimes the body doesn’t cooperate. Sometimes the answers never come.

But healing can also mean learning to see the cracks differently, and allowing the light that already exists to pass through them.

I didn’t invite MS into my life.

No meeting. No handshake. No warning.  It showed up. Sat down on my lap like a cheap dance from the strip club “Pumps”. Rearranged my ikea furniture. Then had the NERVE to act like it belonged!

Before all this, I had plans. Real ones.  Not the kind you say out loud and forget.

Puerto Rico.

A small bed and breakfast near the water. Music low. Drinks flowing. My wife in the kitchen.  Me pretending I knew how to bartend.  Meeting new families and all the while sharing a laugh or two. 

People would arrive heavy.  They’d leave lighter from visiting what I created in my mind years ago. 

That life felt close enough to touch once.

Then MS stepped in and said, “Let’s try something else.” This disease doesn’t knock you out in one shot.  It chips away.  I am talking about hooks to the guts and jabs to the face.  Saving the haymakers for another unannounced day.

Balance goes first. My legs start negotiating with gravity.

Bladder starts making executive decisions without you.  Don’t let that last sentence go over your head, you read correctly.  I piss myself every now and then.  

Your body turns into a group chat where nobody agrees. Now I move through life on wheels.  Not because I gave up.  Because I adapted.  

Big difference.

Let me say something most people I believe won’t admit to.  This kind of life will test your pride.  

HARD!

You go from being the guy who handles everything, to the guy calculating how far the bathroom is.  You start planning exits before you even sit down. You learn what floors matter.  You learn which buildings lie about accessibility.

You learn patience. Not the cute kind.  The kind that gets forced on you.

But here’s the part nobody tells you.  You don’t disappear.  You adjust.

I’m still a husband.

Still a father.

Still a friend. 

Still the same guy who laughs at the wrong moments. I am still that one person who will give truth even if nobody wants to hear it. 

My wife?  She didn’t flinch when I got diagnosed with MS. We’ve been together over two decades.

She signed up for me. Not the conditions.

She jokes. I joke.  We keep it light because the weight is already there.

Love doesn’t get softer in this life.

It gets sharper.

My kids watch all of this. Not the version I wish they saw. The real one. 

They see effort.

They see frustration.

They see the struggle. 

They see me get back up in ways that don’t involve legs.

That matters more than anything I could ever say to them.

Work didn’t stop either.

I still show up.

Still solve problems.

Still deal with vendors, buildings, broken systems, and people who swear something is “urgent” when it’s not.

The difference is I do it with a body that argues back.  Every. Single. Day.

There are moments though.

Quiet ones.

Where I sit there and think about who I used to be. The guy who moved fast. The guy who didn’t think twice about stairs. The guy who had a whole different ending in mind.

I miss him!  I won’t lie about that.

But I’m still here.

And this version of me?

He’s tougher.

Not in a motivational poster way.

In a “you don’t have a choice” way.

I’ve learned to slow down without stopping. To accept help without feeling small.To find peace in places I used to overlook.

MS took things from me. No debate here.  But it also forced something out of me I didn’t know was there.

Perspective.

The kind you don’t get from books or podcasts.  The kind you earn.

If you’re reading this and dealing with your own version of struggle, here’s the truth.  You don’t wait to become who you’re supposed to be.  You become that person right in the middle of the mess.

No perfect timing.

No clean version.

Right here.

I still think about that bed and breakfast.  That dream didn’t die.

It just changed form.  Now it lives in the way I show up. The way I love my family. The way I refuse to disappear.

MS lives with me.

But it doesn’t define the whole house.

I do.

That’s it.

No inspiration speech.

No dramatic ending.

Just me.

Still here

Tuesday Morning Madness: A Comedy of Errors… Or Just Another Day

It’s 9:10 AM, and I’ve already had a full day. And no, not the productive, fulfilling kind of full day…..more like the “I’ve been outside since 6:45 AM because I rely on Access A Ride, and now I’m talking to myself in the cold, wondering where I went wrong in life” kind of day. The type of day where you just wanna say f**k it!…and quit pretending. 

I thought this Tuesday would be a good one. I was wrong. But hey, if you’re a disabled New Yorker depending on paratransit, you probably already know where this is going. If not welcome to the game show I like to call:

“Hurry up and Wait”

It Started Like Any Other Ride…

As any seasoned Access A Ride user knows, you need to be outside early. Not “on time” early….like, “did the sun even rise yet?” early. If you’re not out there, visible and glowing like a neon sign, you’re marked as a no show. That’s right, even if the driver pulls up like a getaway car and takes off before you can wave.

Today, I was smart. Or so I thought. There was a garbage truck blocking my street, so I moved to the corner to make things easier. I saw a van and thought, “That must be my guy!” I hustled back to my building like a caffeinated NASCAR driver in a wheelchair, ready for pickup.

Spoiler alert: It wasn’t my guy. Or was he?

Even worse: My actual driver zipped right by without so much as a glance. I guess he was.

Did he stop? Nope.

Did he even look? Definitely not.

Did he tell dispatch I wasn’t there? You bet.

So now, according to Access A Ride, I’m marked as a “no show.” You don’t wanna accumulate to many NO SHOWS, because AARP will suspend your account. 

Calling the Powers That Be!

So I make the call. You know the one. The “please don’t punish me for someone else’s incompetence” call.

I get a lovely lady on the line (shoutout to her for trying), and I calmly explain my case. Calmly…ish.  

“Ma’am, I was outside, I followed the rules, and the driver didn’t even slow down. That’s not a no show. That’s a no effort.”

Her response? Call back after 8 AM. Try again. Maybe the universe will be more forgiving next time. 

I’m kidding she said no such thing. 

Access A Ride: The Lifeline We Can’t Always Rely On

Here’s the deal: Access A Ride is both a blessing and a burden.

It’s literally my only option some days and for people like me, that means everything.

But let’s keep it real: The service is wildly inconsistent.

Some drivers are cool as hell.

Some are new and trying their best.

Some have clearly been doing this too long and need a break.

And others? Well…

Let’s just say if Satan had a shuttle service, these guys would be doing overtime.

Language barriers? Fine. Everyone’s out here trying to earn a living.

Bad attitudes? Ok fine.

Zero effort? Not acceptable.

It’s not even about the ride sometimes it’s about being treated like a human being who deserves to be picked up, seen, and heard. Not ignored and dismissed

“Service” Should Mean Something

What bothers me most is that Access A Ride often doesn’t feel like a service. It feels like a program a cold, bureaucratic machine on autopilot. The drivers don’t always know how to be of service, and maybe they were never trained to be.

Let’s face it: they’re not hiring based on compassion or awareness. They’re hiring bodies to move other bodies.

But we’re not packages.

We’re people.

The Daily Battle: Good vs. Evil… And My Sanity

Every day with Access A Ride is a gamble.

Will I get the chill driver who’s easy to talk to?

Or the guy who gives off “I’m about to leave you” energy from two blocks away?

Sometimes I’m patient. Sometimes I want to scream.

But most days, I just laugh, because if I didn’t, I’d go nuts. I like to think I’m a professional at being patient… or at least just a few hours shy of certification.

Final Thoughts from the Sidewalk

I got left behind today.

Again.

All because I was standing 20 feet away from a driver who didn’t bother to look.

But I’m still here, writing this blog, doing what I can to shed light on what it’s really like relying on a system that feels rigged against you half the time.

So, to my fellow riders, I say:

Keep showing up.

Even when they don’t.

And to Access A Ride?

Do better.

Because showing up isn’t just our job it’s yours, too.

I took this photo and had AI clean it up for me.  I do that often, you know snapping quiet, random moments on my phone, almost like I’m eavesdropping on life as it unfolds.

I’m drawn to these candid scenes for reasons I can’t always explain. Later, when I scroll back through my camera roll, I like to see what I’ve actually captured. Recently I’ve started to believe the universe slips messages into frames when I’m not paying attention. I might miss them at first, but on the second or third look, something hidden begins to surface.

This one felt like a gentle pat on the back. A subtle wink from the cosmos.

It spoke to me.

And I know this is subjective, but the message was clear:

“You are not invisible. Even when you feel small.”

So let’ me explain what I see in this picture. The man in the photo is alone. Head down. Crossing the street.

That’s me when I move through this concrete jungle. Some days I feel like I’m just passing through unnoticed head lowered, watching every crack in the pavement just so I don’t trip and stumble to the floor. 

What captivates me most in this image is the light slicing between the buildings. It illuminates his path, and he doesn’t even realize it.

MS feels like the traffic….constant. Impatient. In the way.  It doesn’t care how your morning is going.

It honks. It blocks lanes. It reroutes plans without warning.

The city doesn’t stop at least not where I’m from.  Traffic keeps moving.

The sun rises whether you’re ready or not.

This disease moves the same way. No apologies. Always in motion.

I suppose my MS is a New Yorker too.

It never sleeps.

But like the man in this photograph, I am still crossing.

Still stepping forward.

Still here.

I don’t need the world to pause for me to matter.

I only need the next step. 

I promise to keep this post short.

Getting dressed used to take me three to five minutes. Now it takes twenty. What once felt automatic has become a slow ritual of stretching, balancing, and negotiating with my own body. Every morning feels like a long yoga session I never signed up for. I stretch for three minutes just to pull on one sock. Reaching for a shirt feels like holding a peaceful warrior pose that never quite ends.

It is only 7 days into the new year, and already I feel like quitting. Even writing that feels frightening. Am I serious about that thought. Maybe. But I am not ready to give up. I cannot. The cost would be too high for the people who depend on me. I have a beautiful wife, amazing two kids, and three cats who rely on me every day. Our life is not filled with glitz or glamour, but we make it work. Love is our currency, and we trade it for peace and small blessings wherever we can find them.

 woke up feeling different today, though I cannot say better. Nothing has been easy for a long time. I am trying to find an apartment with an elevator or a first floor place where access is simple. Stairs are one of my greatest enemies. Climbing and descending to the second floor is one of the hardest parts of my day.

There are three things that stop me in my tracks every single day.

• Stairs

• Showers

• Getting dressed

Getting into a car is just as hard. Getting into bed is its own challenge. And if something falls to the floor, it is gone. There is no kneeling down to retrieve it. No heroic effort. I just hope someone else will find it and place it in a lost and found, because that is the only way it comes back to me.

This is not a story about giving up. It is a plea to be seen. I am tired. I am scared. And I am doing everything I can to keep going, one slow painful movement at a time

I’ll end with saying I love you and I hope you love me too.

I love you, and I hope you love me too.

You know what it is if you’re here about to read and peek inside my mental and physical health.

I leave this window open.

Here we are at the end of 2025. Some of us are wondering what 2026 will unlock, what challenges might be waiting just around the corner. Maybe I’m not the only one who feels that quiet tension, the uncertainty. Maybe I am. That’s how anxiety works: it sneaks in and tries to get one last word before the year closes out. One last jab to remind me that in this ride called life, we’re both still here, my mind in the driver’s seat, my fears riding shotgun.

There are days I wake up and tell myself, “I can live without you, MS.” And for a moment, I believe it. I start to feel like I’ve got a handle on it. That I’m winning. But then, like a car out of nowhere, it sideswipes me. MS doesn’t knock. It crashes in.

I didn’t invite this disease.

I didn’t neglect my health.

I didn’t do anything to deserve this.

But here it is.

And here I am.

I had big plans. I was standing on the edge of the next chapter of my life, pen in hand, ready to write the story I’d been waiting for. But someone switched the book on me. The plot changed. And no one asked me if I was ready for this version.

I didn’t get to teach my son the way basketball once taught me, how to love a game so deeply it becomes part of your breath. I didn’t get to suit up for paintball with him, both of us a chaotic, deadly duo, the kind that would’ve given our opponents hell. That memory never got to happen.

I probably won’t get to have that father daughter dance when she gets married, the one you always imagine from the moment you first hold her.

Jet skis used to be part of my escape. Now, just the thought of the heat wears me down before I even leave the house. Vacations used to be adventure. Now they feel like recovery missions.

And yet…

I still crave newness.

I still want to level up, even if the level looks different now.

I still chase perspective, even if the view is from a different angle.

Yes, I can still do some of the things I love. But not in the same way. Life now is slower, quieter, and lower to the ground. The altitude has changed, but I haven’t stopped climbing.

That’s what this year has taught me.

MS interferes. It disrupts. It steals.

But it hasn’t stopped me.

I’m still trying.

I’m still pushing.

I’m still smiling, even when I’m running on empty.

If you’re reading this, maybe because you’re fighting your own battle, or maybe because you care enough to witness mine, I just want to say thank you. Thank you for standing beside me, for seeing me, for not looking away.

And to MS…

You may have rewritten parts of my story, but you’ll never own my voice.

You’ll never take my spirit.

I didn’t ask for you, but I’m still here.

And I’m still me.

Bring it on 2026!!!

Yesterday pulled me into a story I didn’t expect. A story that felt heroic and stupid at the same time. A story about bravery, bladder management, and surviving the New York holiday season with MS in a wheelchair.

I had my holiday Christmas party at work. Good people. Good food. Drinks flowing like they were trying to get us all fired. We even played white elephant. I don’t love the name. The whole thing screams “someone’s HR department approved this without thinking.” But whatever, not the point.

I planned ahead. I asked Access-A-Ride to pick me up early so I wouldn’t embarrass myself after a few social drinks. MS plus alcohol is a risky mix. My bladder reacts like it’s in a hostage situation. And I’ve seen enough movies to know company holiday parties end careers.

My ride came.

But I never got a call.

No two-minute warning.

Nothing. Radio silence.

So there I was, stranded in Rockefeller Center during peak tourist season. Streets closed. Police everywhere. Tourists swarming like pigeons with iPhones. The whole place felt like a blitz invasion. And I missed my damn ride.

I knew if I called Access-A-Ride for a rescue van, I’d be standing outside until 2037. So I opened Uber. It showed 135 dollars to get home to Brooklyn. My jaw tried to quit my face. I blinked, closed the app out of pure shock, reopened it, typed my address again… and the price jumped to 150.

I called my wife and said the words no wheelchair user says lightly:

“I think I’m going to take the train.”

My anxiety slapped me across the chest. My muscles locked. My leg refused to bend. But I rolled toward the subway anyway. I took the elevator down to the platform. The station still looked like it hasn’t been cleaned since the 70s. People stared like they were expecting me to perform a miracle.

The train pulled in.

And my wheelchair refused to get on.

Three tries.

Once back. Twice forward.

Total humiliation. Total stress. Total body lock.

Then I made it. I was on. On the damn train. My first time back since becoming a full-time wheelchair commuter. I didn’t care if I was blocking the doors. People could walk around. Consider it their holiday cardio.

My mind fixated on one fear:

“What if the elevator at my stop is broken?”

But the train kept moving. So did I.

When I rolled out at my station, everything felt unfamiliar. I felt like a visitor in my own neighborhood. I had no clue how to exit the station, even though it was accessible. I figured it out eventually, because survival is a skill MS forces you to learn.

Then came the finale.

I had to wheel myself almost a mile home.

In freezing rain.

Through Brooklyn.

With an MS body that already clocked out.

By the time I made it to my front door, I felt scared, vulnerable, exhausted, and proud all at once. I haven’t felt that mix in years. My body was humming with aches. My mind was done with humanity.

I got home around 6:30. Ate dinner. Showered. Stretched. Threw ice on my back. Grabbed my cat. Knocked out.

What a day.

Will I do it again?

Not anytime soon.

Maybe in a true emergency.

Or if Uber raises the price to 300 and I lose all sense of self-worth.

Yesterday showed me something. I can still push into uncertainty. Even when it sucks. Even when I’m scared. Even when my body fights me.

I survived the New York City holiday transit apocalypse.

With MS.

In a wheelchair.

In freezing rain.

That’s enough adventure for a while.

I’m not well. I am not just talking about today.

It’s hard being in this body. I move slow. Slower than anyone my age should.

My knees hurt. Every step sounds like bubble wrap under my feet.

I fight sleep all day, but if I gave in, I’d be out for the rest of my day.

I wake up weak. My body needs an hour before it works the way it should.

Using the bathroom is a race I lose too often.

Not making it on time crushes me.

I never expected this at 47.

My body does what it wants. Farts slip-out. My butt muscles can’t keep it in and together.

I hope it doesn’t smell. I’m usually in public when it happens. I have to walk away like I didn’t do it.

My weight got out of hand. I am close to diabetes.

I’m also one more lazy night away from gaming and probably getting a heart attack.

The physical stuff hits my mind.

I lost my drive to work out.

I don’t feel the point right now.

I forget things.

I leave the kitchen without what I came for.

I leave water behind even when I need it.

I go through this checklist:

Do you need water

Do you need medication

Are you looking for the cat

Were you hungry

MS spins me into confusion, doubt, and frustration.

You might expect an answer about how I rise above all of this.

I don’t have one. It hurts. It feels unfair.

I never pictured myself like this.

I used to be active. I used to chase things.

Now I sit more than I move.

I feel my world shrinking.

If you’re reading this, I’m okay. But not every day is easy.

I feel everything.

I deal with everything.

Some days hit harder than others.

Giving up sounds simple.

But I work for my kids.

I keep going for them.

Only when they’re set would quitting even cross my mind.

I don’t know what the future holds.

I don’t want to live off disability checks.

I don’t want to add more stress to my family.

I want better.

So I tell myself this:

I will heal.

I will get better.

I will see a different day.

Even when it feels far away, I still say it.