Alexa Daskalakis

The Nerves I Have

Written for the record. That’s all.

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The nerves I have are damaged — not imagined.
They send pain signals when there is no injury.
They misread cold as trauma.
They misfire from pressure, movement, and rest.

This is not psychological.
Not emotional.
Not stress in disguise.

It’s neurological.
Confirmed.
And real.

I was diagnosed with neurogenic Thoracic Outlet Syndrome.
It’s not the vascular kind.
It’s the nerve version —
completely different, often mischaracterized.

Since then, the symptoms have extended beyond that diagnosis.
Over time, it’s affected my chest, knees, back, and feet.
What we now believe I have is a system-wide nerve condition.

There is no cure.
And unlike many conditions where movement helps,
physical therapy typically makes ours — mine — worse.

That’s because nerves regulate movement and temperature.
They’re the system that tells you when something’s too hot to touch.
When those nerves are damaged or misfiring,
motion and stimulus don’t help — they aggravate.

So while others may improve through motion,
for people like me, movement is often what sets it off.

The only thing that helps is stillness.
Rest.
Less input.

That’s why I no longer do the lifting, training, or intensity I once did.
You might see me go for a walk —
but that’s because I’ve learned how to live inside the limits.

It’s not always easy to detect.
And it’s especially hard to recognize in someone young.
At first, it was seen as something that would heal.
But it didn’t.

It took years — and excellent doctors —
for the pattern to become undeniable.
And it’s now acknowledged.

At 20, I had surgery.
One rib removed.
Two neck muscles removed.
And a nerve decompression.

Still — I live with pain.
I have to be careful.
I can’t do impact.
I can’t override what my body tells me.

But I function fully.
And that’s what makes it difficult to explain.

When I was younger — around the time of surgery —
I told a few people.
I had to leave work.
I was working at a gym,
and needed to step away.

Even then, people didn’t know how to react.
Some panicked.
Some assumed it was far worse.
When I was younger, someone once asked if I needed a wheelchair.
I laughed — because I didn’t.
But it put me off.
People don’t say things like that to me anymore.
Not because the condition changed —
but because I’m no longer treated the same way.

I’ve also had people assume I’m disabled.
Technically, maybe.
But I don’t identify that way —
not out of fear of the word,
but out of respect for people with truly serious, life-altering conditions.

I’ve even been compared to someone who’s secretly blind.
That’s never made sense to me.
Because I am fully functional.
I just happen to have a complex nerve condition.

It’s how my body is wired.
My father has Bell’s palsy.
So did his mother.
As they had it — I have it.
It runs through us.

But I’m not sick in the traditional sense.
And it’s not something that necessarily passes to children.
My doctors were clear: the genetic component is minimal.
My father’s brother never had it.
I have a full brother (same parents), and he doesn’t have it.

They told me it’s extremely rare — and even more rare to pass on.
The odds of my children having it are incredibly low —
so low that my doctor said it would be extremely shocking
to see it show up in them.

He said:
“Let your kids run, play, do whatever they want.
This is so extraordinarily rare that I don’t think your kids will have it.
To see it show up in them — it would be extremely shocking.
I have operated on a father and son — and a mother and daughter — a couple of times,
but even then, it wasn’t really because of genetics.
It was more about the universe’s infinite number of chances lining up.
That’s how rare what you have is.”

I say that upfront because I know how quickly people spiral —
assuming they couldn’t have children with someone like me.
But that’s not the case.

The odds are overwhelmingly in their favor.
So let’s stay grounded.
They won’t have it.

And growing up, I pushed hard.
I did dance, martial arts, and daily structured activities.
There were no breaks.
That wore my body down.
And life added the rest.

I don’t resent that.
Everyone’s path is different.
Mine just led here.

But the hardest part
isn’t the pain itself —
it’s having to manage other people’s emotions
about something I’ve already made peace with.

When I do mention it,
it stops being about what’s real.
It becomes about fear, confusion, sympathy, or disbelief.
And I don’t need any of that.

There were a few times I told someone — only because I had to.
I said what it was called, that I was fine, and just wanted them to know in case it ever came up.
A few showed quiet sympathy, then carried on like normal.
That was all I needed.
If you’re someone who did that — thank you.
You didn’t make it bigger than it was.
I also understand why others react differently — that’s normal, too.
I just can’t manage it.
I’m not looking for worry or projection.
Just space to live with what I live with.

So now I don’t talk about it.
Unless it’s directly relevant —
like needing help pushing something heavy —
you’ll never hear about it.

Even people I’ve lived with
never knew.

Not because I was hiding it.
But because it never needed to define anything.

I’m not writing this for sympathy.
I’m not writing it for awareness.
I’m writing it for the record —
for whoever comes across this one day
and needs to know it was real.

Yes.
I have a full-body nerve condition.
I’ve lived with it in silence.
I’ve never used it to get ahead.
I’ve never made it anyone else’s responsibility.

And I want this noted —
clearly, quietly, permanently:

I will not live to see the cure.

Doctors have said it may take hundreds of years
before medicine fully understands what I have.

And that’s what stays with me —
not the condition,
but the fact that I’ll never see the end of it.

Still, I’m at peace.
Because people like me
become the case notes.

And if what I’ve lived through
helps someone avoid the same pain
centuries from now —
that’s enough for me.

So yes —
I had it.

And I left this behind
for whoever finally maps it out.

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Disclaimer:
This writing is a personal record of lived experience and is not intended to provide medical advice, diagnosis, treatment, or clinical instruction. When the author uses phrases such as “for the record,” they are meant poetically — as reflections of memory and experience, not as a legal, medical, or evidentiary statements.
The condition described, the surgical procedures mentioned, and any references to physician commentary are specific to the author’s individual case and may not reflect broader medical practices, outcomes, or standards of care.

Quotations attributed to medical professionals are paraphrased recollections based on personal memory. They are not direct citations and should not be interpreted as official medical guidance or endorsements. The physicians referenced do not endorse this writing and have no involvement in its creation. All physicians referenced in this writing are unnamed and unidentifiable.

Readers should consult licensed medical professionals for any health-related questions or decisions. The author is not a healthcare provider and makes no claims regarding prognosis, causation, treatment efficacy, or relevance to others.

This testimony is provided strictly for personal documentation and archival purposes.