People ask me how I’m doing all the time, and I usually give them one of two answers.

“I’m above ground, vertical, and breathing. So far, it’s a win and everything else is just icing.”

Or:

“I’m great! Some days are goodder than others… today is others.”

Most people laugh, which is fair because honestly, I laugh too. Humor has become one of my favorite survival tools because when your body starts behaving like an emotionally unstable group project held together with duct tape, caffeine, and nervous system betrayal, you either develop a sense of humor or end up screaming at inspirational signs in the home décor aisle. There is only so much “everything happens for a reason” a human can hear before wanting to launch a decorative wooden plaque directly into low Earth orbit.

For clarity, I do not define myself by a diagnosis. My body happens to be dealing with MS and chronic pain. Unfortunately, the rest of me came attached, so naturally it affects everything. That distinction matters to me because one of the strangest things that happens after a diagnosis is how quickly people can reduce an entire human being down to a medical label. Suddenly you are no longer just yourself. You become “the person with MS.” Conversations change. Expectations change. Sometimes even the way people look at you changes.

And holy shift, does that change a person.

While diagnoses help explain what is happening physically and neurologically, I refuse to hand over my entire identity to something my body is experiencing. MS affects my life deeply. Chronic pain affects my life deeply. Mobility loss affects my life deeply.

They are realities I navigate, not definitions of my humanity.

The hardest part is that none of this arrived in one dramatic movie scene where everything suddenly fell apart overnight while emotional piano music played in the background. Real life is rarely that cinematic. Instead, it happens slowly through accumulated exhaustion, invisible grief, changing mobility, neurological weirdness, financial stress, chronic pain, and thousands of tiny adaptations that nobody else notices because they happen quietly behind the scenes.

At some point, uncertainty stops feeling temporary and starts becoming part of the architecture of your life.

Because uncertainty sounds manageable when people imagine it happening for a short season. A rough patch. A temporary challenge. Something you push through before returning to “normal.” But when your body is dealing with something ongoing and unpredictable, uncertainty becomes woven into everyday life itself. You stop assuming your body will cooperate just because you need it to. You stop making plans without contingency plans for the contingency plans. You stop taking basic functionality for granted because suddenly even ordinary things come with invisible negotiations attached to them.

Living in uncertainty for years changes your relationship with hope, energy, independence, identity, and trust in your own body.

Especially with MS.

One of the strangest parts about MS is realizing your body no longer responds consistently to effort, logic, planning, or stubbornness. As someone whose personality has historically included phrases like “I’ll just push through it” and “watch me,” this has been deeply offensive on a spiritual level. Apparently, sheer determination is not a medically recognized treatment plan.

Rude.

Some days my body cooperates enough that I almost remember what normal used to feel like. Other days my nervous system behaves like a WiFi connection during a thunderstorm while my legs quietly stage a rebellion without informing upper management first. And because MS symptoms can fluctuate so unpredictably, there is a constant emotional tension living underneath everything. You never fully know which version of your body you are waking up to each day. Will it be manageable? Exhausting? Painful? Foggy? Functional? Angry? Spicy?

Nobody knows.

Least of all me.

And then there is the chronic pain itself, which changes your relationship with life in ways that are difficult to explain unless you have lived inside it. Pain is not just physical sensation. It becomes mental, emotional, logistical, and financial. It is the constant background calculation running quietly behind every decision you make. Every outing, every errand, every invitation, every task suddenly comes with invisible math attached to it. How much energy will this require? How much recovery time will this cost tomorrow? Is this worth the physical aftermath? How far is the walk? Are there stairs? Is there seating? Can my body handle this today, or is it planning to file a formal complaint later?

People often see someone functioning and assume functioning means fine, but many people living with chronic pain become experts at appearing okay while privately operating at levels of exhaustion that would flatten most people emotionally, mentally, and physically. Not because we are trying to deceive anyone. Mostly because life keeps demanding participation anyway. Bills still exist. Responsibilities still exist. Grocery stores still insist on pants and socially acceptable behavior.

Honestly, the audacity.

The mobility loss carries its own grief too, and I don’t think people fully understand the emotional weight of losing independence in slow motion. Most people imagine mobility loss as one dramatic before-and-after moment, but often it happens gradually enough that you adapt while grieving at the same time. You stop going certain places because the physical cost becomes too high. You rethink events based on parking distance, walking requirements, accessibility, recovery time, seating options, energy reserves, and how badly your body might retaliate afterward.

You start calculating things other people never even have to think about.

And there is something profoundly humbling, frustrating, heartbreaking, and honestly infuriating about realizing your body now has veto power over plans your mind desperately wants to make. That messes with your identity more than people realize. Especially in a culture obsessed with productivity, hustle, independence, and pushing through exhaustion like burnout deserves its own Olympic category. We glorify over-functioning. We romanticize self-sacrifice. We treat rest like laziness and adaptation like weakness.

Meanwhile, people dealing with chronic illness are over here becoming part-time neurologists, pain management specialists, insurance negotiators, mobility strategists, emotional support humans, and energy accountants while still trying to preserve enough dignity to exist publicly without crying in the Costco parking lot because walking from the handicap spot still hurt more than anyone realizes.

And speaking of things nobody talks about enough — the financial side of chronic illness deserves its own rage-filled TED Talk. Because holy shift, nobody warns you about the price tag attached to existing in a medically complicated body. Appointments. Testing. Treatments. Medications. Specialists. Adaptive equipment. Accessibility needs. Transportation. Insurance battles. Energy limitations. Recovery time. Reduced work capacity. The endless stream of things insurance either barely covers, partially covers, or stares at suspiciously as if you personally invented illness just to inconvenience them specifically.

It is exhausting.

Not just physically. Existentially.

There is something deeply frustrating about trying to care for your emotional and physical well-being while simultaneously calculating whether your body can financially afford to exist this month. Chronic illness is not just physically draining. It is emotionally expensive, mentally expensive, spiritually expensive, and literally expensive. And there is something deeply infuriating about living in a world where support often depends on proving you are struggling “enough” while still somehow remaining inspirational and pleasant for public consumption.

And yet… despite all of it…

Life still keeps happening.

That is the strange and beautiful thing nobody tells you. Pain does not erase humanity. Uncertainty does not eliminate joy. There are still ridiculous moments of laughter that make your ribs hurt. There are still perspective shifts, deep conversations, meaningful connection, nerd-child joy, Persephone adventures, beautiful sunsets, weirdly healing salt caves, tiny victories that feel enormous, and moments where hope quietly sneaks back into the room carrying snacks and refusing to leave.

Hope changes shape after long-term uncertainty. It becomes less about guarantees and more about presence. Less about becoming who you used to be and more about learning how to compassionately meet yourself where you are now. Less about pretending everything is fine and more about finding dignity, meaning, humor, and humanity inside realities you never would have chosen for yourself.

I wish I could give this story a cleaner ending. Something inspirational and tidy. Something that wraps everything up in a triumphant little bow while soft piano music swells dramatically in the background and a motivational narrator whispers about resilience.

But the truth is, my body is still dealing with MS and chronic pain.

Some days are goodder than others.

Today is others.

And yet… I’m still here. Above ground, vertical, and breathing.

So far, it’s a win.

And maybe that’s enough for today.