The Girl Who Walked Again

By T.A. Duffy

We’ve all heard the word anniversary before.

Some people have wedding anniversaries, some have job anniversaries, and others have anniversaries celebrating the milestones of a relationship. It’s typically a joyful word, indicative of a celebration.

But not mine. I have a different type of anniversary, the anniversary of when I got acute disseminated encephalomyelitis (ADEM).

This October marks seven years since I was first diagnosed with ADEM, and I can’t help but ask, “What was the point?” This entire recovery. Why have I pushed so hard?

Why?

Because I knew I had a greater purpose?

Because I knew I deserved better?

Because I was going to prove everyone wrong, everyone who saw me a certain way, as sick, as weak.

It’s come back around to that fateful time. October. I can smell it in the atmosphere. The leaves are falling. The dirt is damp and the air is turning cold, but the sun is warm. The sky is a clear baby blue.

It’s Autumn.

But is it the Autumn of 2024 or of 2017? In my mind, it’s often difficult to tell.

I’d almost forgotten.

For a short time there, it had almost snuck up on me.

Why, after so many years, does it still have a hold on me?

It’s relentless.

Is it fear? Survival?

Or something else?

I got a UTI again. It was a freak accident, but still. My brain immediately panicked. “It’s happening again. See, it’s happening again. We told you it wasn’t over, and we were right.”

The thing is, I think I’m always waiting for something bad to happen, for what I have to be taken away. Even when I think I’ve released control, that fearful part of my subconscious hasn’t. Instead of seeing this UTI for what it was, my brain says, “See? It’s never over. This is what you get for trying to heal, to move forward.” And it does feel like something is standing in the way, as if I haven’t learned enough lessons at this point.

Sometimes, it feels like I’ve been cursed.

Like the universe said, “You see these things that other people have? You can’t have them.”

And I cry out, “Why?” but receive no answer.

I watched as others lived their lives, not knowing what they truly had.

And even as I attain them myself- a job, a degree, better functioning- I remember how difficult it was to get them.

For a long time, all I’ve heard from the universe is ‘no.’

No, you can’t walk.

No, you can’t feel.

No, you can’t live without pain.

No, you can’t feel physical attraction.

No, you can’t experience romantic love.

No, you can’t graduate high school.

No, you can’t go to college or get a job or have a family or live a normal life.

But what if…

The universe wasn’t saying ‘no?’

What if it was saying, “There’s another way to live. You’re going this way.”

So many times, I’ve felt like I was in the world and yet separate from it. I would watch in isolation, only able to touch it from afar.

Glimpses of life, of what I could have had if it had gone a different way.

I remember being in the hospital. It was the second week, after the ICU, after I’d begun treatments, after they’d told me I had ADEM. As if that was supposed to mean something to me.

I had been practicing with the walker.

I stood before the window overlooking the busy streets of Boston.

To this day, I remember that moment in perfect detail.

That window symbolized how I had been torn from humanity, cast out as this other ‘thing,’ a thing no one understood.

And so, I had to find ways to fit in, to appear ‘normal.’

But why?

Why didn’t I just make them all see it? Why did I hide who I had become?

I wanted revenge on the world, the world that had isolated me, and I thought the answer was to fit back in and be one of them. Then I could say, “See? You tried to cast me out, but I came back.”

So, why didn’t I feel better?

I had such bitterness in my heart that I punished myself and my body. And for a time, it worked.

I hadn’t yet accepted the truth; I am not like other people.

And I never will be.

When I say ‘other people,’ I mean those who don’t understand what it is to live with a neuroimmune condition. Because unless you have, there’s no way to understand.

It is not to make others feel bad.

It’s simply the only way to say it.

I was and still am different.

After I got sick in 2017, I read books more than I talked to people.

Hundreds of books, all different kinds.

I wrote music on the piano and books instead of going off to college, getting into a relationship, or experiencing attraction and love.

Instead of drinking and having crazy adventures and getting to make mistakes and then learn from them, I was in rehab, or at the gym, or journaling or meditating.

Alone.

I was alone with myself and the trauma that had cut me off, forced to face it every single day.

I still feel this loss.

There are many things I hear others, my friends, my siblings, and strangers, talk about that I do not understand.

Because the universe said, “Not that way. This way.”

Instead of living in a dorm, I was living at home in a completely different life, one in which my body appeared out of my control.

As I got older, I started to meet more people. I went to a commuter school, became a tutor on campus, and eventually, after years, became one of the strongest students in my program. I even won an award.

I was surrounded by people who loved me, who saw me as smart, funny and kind. And yet, all I could help thinking when I would leave them is, “You don’t really know me. Did you know I used to be in a wheelchair? Did you know for five years, I had to use a tube to go to the bathroom? Did you know for years, the only thought that gave me any comfort was maybe I’ll die today and it will all be over?”

Now, seven years after getting sick, I am a teacher.

I teach kids who are the same age as me when I got sick, when my life changed.

And all I can think of now is, “How do I let this all go? Can I let this all go?”

I’m still in therapy for my bladder.

People still look at me in confusion when I say pelvic floor, like they’re trying to appear like they get it, but they can’t.

But maybe that’s just how life will be?

I will forever see and feel and experience things that are different from the way others do.

I was 17.

When youth is stolen from you so cruelly, one can only feel bitterness.

As I strove to get it back, I began to realize that I probably never will.

That time for me will forever be different from that of other people.

I am different.

I will always be different.

But is that a bad thing?

Maybe I was meant to be different. Maybe I have to be.

I’m done pretending that part of my life didn’t happen or that somehow, it was inferior to what I would have experienced.

I’m 24 now.

I am still healing.

And yes, I am different.

My bladder works differently.

I don’t think about sexual attraction. In fact, it feels foreign to me. It is something that feels more like a memory than a reality.

But I can still love.

I still want a relationship, and I deserve one.

I get sick more easily than some people.

So what?

If I can accept these parts of myself, then I am truly loving myself.

I always have this fear that when I take a step backward, like a UTI or getting sick, that I’m going back, that everything will slip away.

But time continues forward.

I am not the same as I was.

Life is not the same.

And it is time I, and everyone else with neuroimmune conditions, stop viewing ourselves as less because of what we have been through and start seeing ourselves as greater.

Because I didn’t just walk again.

I changed my life, and I changed myself.

And even if my healing journey takes the rest of my life, it doesn’t matter. Because I know and love the person I was, the person I am, and the person I will be.

And any person or situation that tries to make me feel ashamed of who I am, I will walk away from.

Today, I encourage everyone, with or without a neuroimmune condition, to live for themselves, not for who others think they should be.

My dream isn’t just to walk, but to fly.

And in the process, to take others with me, something I can only do because of where I have come from and where I believe I am going.