Last week gave me a bitter sample of what life could look like if I had to do this MS thing with no safety net. No wife reminding me to take my medication. No kids helping with small things that feel like mountains. No one checking in just to say, “You good?” It was quiet. Too quiet. And that silence? It wasn’t peace—it was a preview.
This month, my wife went on a well-deserved solo vacation to Africa (Morocco) to be with our daughter, who’s studying abroad. At first, when it was just talk, I was genuinely happy for her. As the days drew closer, I stayed excited for her. I knew this trip could be a much-needed reset. Caring for someone with a chronic illness like Multiple Sclerosis isn’t easy, and I’ve always known that. But I had one lingering question: “Could my wife do this trip without me?”
You see, back when I was healthier, I was the team leader on all vacations. I carried all the passports, held the mobile tickets in my “murse” (that’s a man’s version of a purse), and played the role of chauffeur, butler, and part-time barista as well. I would make sure my wife had her happy juice by 10 a.m. because, hey—it’s 5 o’clock somewhere in the world.
While I was focused on how she’d manage without me, I didn’t give a second thought to how I’d manage without her for a week. Who was going to cook? Take my plate to the kitchen? Get me water or pick up the remote I dropped? Work was out of the question—there was no one to get me out the door or receive me when I came back. My manager wasn’t thrilled to hear I’d be off for nine days. I offered to work from home. No response. Silence. Corporate America doing what it does best…..ghosting.
There was not a moment I could’ve given my wife a proper sendoff before she left. The living room was filled with two suitcases and an oversized carry-on that could’ve fit a week’s worth of Trader Joe’s groceries. I had therapy that afternoon, so I didn’t walk her out. When my session ended, I came back to a quiet, empty apartment, and loneliness hit like a sucker punch. “Well… here we go. You got this, Jon.” That night, I wasn’t too bothered. I had the bed all to myself, and I made it into a fortress. Best pillows for snuggling, one for my head, two for my calves. I floated through the night like a king. Great sleep. Great dreams.
But the next morning was different.
My son was home, getting ready for school, so I wasn’t technically alone yet. But once he left, the silence moved in. No sound—except the occasional door creaking downstairs, a car zooming by with bass on blast, or my cats doing what cats do. One of them purred so loud it sounded like I was living inside a Dolby Surround Sound commercial. The other? Snored so hard, I thought the lights might flicker off. And my heartbeat? It was giving shamanic healing drum circle energy. So I meditated from time to time alone at home.
But the silence didn’t stay silent for long. It morphed into that other kind of noise; the one in your head. The voice that kicks your mental door down like, “BOOM, guess who’s stepped into the room?!” And just like that, the intrusive thoughts took over:
“What if I fall? Who’s here to call 911?”
“Would anyone find me in time?”
“Could I bleed out alone in my apartment while emergency services try to get into the apartment?”
I felt trapped. My building has stairs, and my wheelchair can’t make it down the last part. If I had an elevator, I could at least roll to the park, grab some lunch, feel the sun on my face. But nah I’m here, grounded by concrete and circumstance. That inner voice? It didn’t let up.
“You could be doing better for yourself.”
And to be fair, it wasn’t wrong.
My MS workouts leave me depleted. I barely do them anymore. They feel pointless because the results don’t show. But I know deep down they’re not about short-term wins. They’re about preserving what little strength I’ve got left. They help with mood, too. Still, I’ve gained a lot of weight since 2022. I swore in 2007 I’d never be “Fat Jon” again. But here I am. Can’t hide it. Can’t suck it in. But… f**k it.
So while my wife was away, I tried a few new things. Chair yoga. An online aerobics class. Both had me so wiped, I couldn’t walk after. I was out of breath, out of shape, and definitely out of alignment. I even skipped the last ten minutes of the class. No shame. After moving my body, I nourished it. Made breakfast. Then I listened to a history book on Spotify, America for Americans by Erika Lee. This book here was upsetting for me. Whew. Let’s just say it’ll make you lose your appetite and your faith in flags. “Make America Great Again?” When exactly was that? Asking for every immigrant family ever. Spoiler alert: This country has a mean streak. But I digress…
Back to being alone.
With no distractions, I got a lot done. Wrote a few blogs. Reflected. Got honest. When you’re left with just yourself, things get real clear, real quick. Why am I still fighting for mobility, for a life that flipped on me? Why am I still pushing? Because somewhere deep inside, under the layers of grief and grit, I still believe in what’s possible. I miss paintball with the fam. Boxing with my BFF. Basketball with my son. I miss beach walks with my wife while on vacation.
Truth is, this disease humbled me. It cooled me down. Mentally. Before MS, I was wild. Loud. Selfish. Rude. Now? I listen more. I pause. I see people better. I feel things deeper. And in that silent stillness, between my cats doing purr sound checks and my own thoughts pacing the room, something shifted. Loneliness started speaking a different language. Not fear. Not grief. But truth. And strength. And reflection. I started seeing my alone time not just as isolation, but as revelation. A kind of spiritual download, like the new age spirituality folks say. Because when you’re forced to be with only yourself, the mirror isn’t glass, it’s internal.
With this new realization I knew I wasn’t going to stay still.
I realized this:I don’t want to do this alone. But for a moment, I think I could.
I cooked when I could.
Rested when I needed.
Cried without shame.
Laughed mid-struggle.
Stretched.
Typed.
Journaled.
I listened.
I survived.
And sometimes… surviving is the flex.
I don’t ever want to do life, or MS….without the love I’m blessed with. My wife. My kids. My furry roommates. My tribe. But now I see that even when I’m alone, I’m not powerless. This disease has taken a lot from me, but it handed me back this truth:
Even by myself, I’m still here.
Still listening.
Still fighting.
Still me.
And if I had it my way? I’d still prefer someone in the next room yelling, “Babe, did you take your meds?!” Because connection? That’s part of the medicine. Support is spiritual. Love is adaptive equipment. And my people? They’re my ramp back to sanity, purpose, and joy. I’ll never take them for granted again, not the voices that check in, the hands that help, or the presence that makes the silence less loud. I survived, but it wasn’t cute. I was out here dropping remotes, burning toast, and giving myself motivational speeches like I was Gary V . I proved I can do it alone….but why would I want to. While I held it together, while I pulled strength from places, I didn’t even know were still alive in me. I say all this to say this one last point, and let me be crystal clear: I am capable of being alone, but I wasn’t made to thrive alone. This Journey with Multiple Sclerosis isn’t just about resilience; like I said earlier, it’s about relationships, Love, Connection. The folks who help me laugh when I want to cry (which is always), who bring warmth to the coldest days, who remind me I’m more than this diagnosis. Doing it alone taught me I’m strong. But being seen, being held, makes me whole.
Because surviving is one thing but thriving? That takes people.
Me Myself, and MS 
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