Building While Waiting

Medical leave was supposed to be temporary.

At least, that was what Mara told herself in the beginning.

A pause.

Enough time for her body to settle down.

Enough time for the doctors to understand what was happening.

Enough time for the reasonable-accommodation process to work the way she believed it was designed to work.

Then she would return.

That was the plan.

But almost nothing about that season of her life behaved according to plan.

Mara was already struggling with granulomatous mastitis, an inflammatory condition that had brought pain, treatment, appointments, uncertainty, and the exhausting experience of living inside a body that no longer behaved predictably.

And that was not the whole story.

Something else was happening.

There were symptoms that did not seem to belong neatly to the diagnosis she already had.

Pain.

Inflammation.

Fatigue.

Days when her body seemed to be fighting something no one had yet named.

She went to appointments.

Answered questions.

Repeated symptoms.

Waited for referrals.

Waited for testing.

Waited for answers.

Eventually, there would be another name for part of what she was experiencing:

ankylosing spondylitis.

But Mara did not know that yet.

At the time, she knew only that something was wrong.

There is a particular kind of fear that comes from being sick before the illness has a name.

A diagnosis, even a difficult one, gives uncertainty boundaries.

Before diagnosis, every symptom becomes a question.

Is this connected?

Is this getting worse?

Will this go away?

Is this my life now?

Mara became a student of her own body while simultaneously being required to explain that body to other people.

Doctors needed symptoms.

The Directorate needed documentation.

The accommodation process needed information.

Forms needed dates.

Letters needed restrictions.

Someone always seemed to need proof of something Mara was already living.

She had requested the ability to continue working through telework.

That mattered to her for reasons that extended beyond a paycheck.

She believed she could still contribute.

Maybe not in exactly the same way.

Maybe not from the same physical location.

But she could think.

Write.

Research.

Analyze.

Coordinate.

Plan.

Solve problems.

Her body had limitations.

Her mind was still working.

Mara wanted the accommodation process to recognize the difference.

So while she was trying to understand what was happening medically, she was also trying to understand what was happening administratively.

One set of documents came from physicians.

Another from the Directorate.

One described symptoms.

Another described procedures.

One asked what her body could tolerate.

The other asked what the institution would permit.

Mara lived between them.

She read medical notes in the morning and accommodation correspondence in the afternoon.

She attended appointments and returned home to review policies.

She tried to answer questions about her future when she did not yet understand her present.

And still, she wanted to work.

That was one of the hardest parts for her to explain.

Medical leave sounded restful when other people said it.

It was not restful.

Mara was not vacationing.

She was not taking time away from responsibility because she wanted less responsibility.

She was fighting to understand her health while simultaneously fighting for a process that might allow her to continue contributing safely.

The distinction mattered.

She did not want to be removed from the world.

She wanted another way to participate in it.

The authorization to telework did not come.

So Mara stayed home.

And suddenly she had something she had almost never possessed in her adult life.

Time.

An enormous amount of it.

Not free time.

Not peaceful time.

Unclaimed time.

Time between appointments.

Time between emails.

Time between calls.

Time spent waiting for someone to make a decision.

Time spent waiting for another referral.

Time spent waiting to learn whether the pain had an explanation.

Time spent waiting for the accommodation process to move.

There are only so many hours a person can spend researching her own illness before the research itself becomes another kind of sickness.

Mara learned that quickly.

She could search symptoms until every possibility became frightening.

She could reread the same medical notes without finding an answer that wasn't there.

She could refresh her email waiting for correspondence from the Directorate that would arrive when it arrived regardless of how often she checked.

She needed somewhere else for her mind to go.

Leo would leave for work.

The girls would disappear into their own schedules.

Lily would head to preschool.

Then the house would become quiet.

Too quiet.

Mara tried to rest.

Everyone told her to rest.

The instruction sounded simple.

Her body understood it better than her mind did.

Resting felt suspiciously similar to doing nothing.

And Mara had built an entire identity around doing something.

Solving something.

Helping someone.

Completing something.

She stretched.

Organized.

Reorganized.

Made lists.

Read.

Some days her health determined the schedule completely.

She learned not to trust a good morning too much.

Feeling better at eight did not guarantee she would still feel functional at two.

There were days when she started something and had to stop halfway through.

She hated that most.

Unfinished tasks felt like accusations.

Her body was forcing her to learn a limitation her personality rejected:

Not everything could be completed simply because she had decided to complete it.

That lesson made her angry.

Not dramatic anger.

Quiet anger.

The kind that sits beneath the skin.

She had spent years being dependable.

Now she could not always depend on her own body.

And because she was not authorized to telework, she could not even direct her remaining capacity toward the work she already knew how to do.

That left a question Mara had never expected to face:

What do you do with capability when no one gives it somewhere to go?

For a while, she had no answer.

Then one afternoon she opened her laptop.

She was not looking for a new life.

She was looking for something to read that was not about her health and not about her case.

One link led to another.

Broadband.

Digital access.

Workforce participation.

Then North Carolina's Digital Opportunity initiative.

Mara clicked.

And something happened that had become increasingly rare.

She became curious.

Not about herself.

Not about her symptoms.

Not about what someone had decided about her.

About a problem.

She kept reading.

Rural families.

Older adults.

Veterans.

Job seekers.

People trying to participate in an increasingly digital economy without reliable access to the tools required to enter it.

Residents completing employment applications on phones.

Families without adequate computers.

People struggling with telehealth platforms.

Individuals vulnerable to scams because technology had entered their lives faster than instruction had.

Mara recognized the problem immediately.

Technology was being treated as though access meant availability.

It didn't.

A portal could exist and still be inaccessible.

A job could be posted and still be unreachable.

A telehealth appointment could be available and still be unusable.

A person could technically have internet service and still be excluded from the opportunities delivered through it.

Mara leaned toward the screen.

Her medical documents remained on one side of the table.

The accommodation documents sat on the other.

For the first time in weeks, she stopped looking at either stack.

She opened a notebook.

At the top she wrote:

What happens when opportunity moves online but people cannot follow it there?

Then:

Who helps them?

The questions awakened something.

Mara began researching.

The hours changed.

She still had appointments.

Still had pain.

Still had days when exhaustion made concentration difficult.

Still checked for accommodation correspondence.

Still wondered what the next medical test might reveal.

None of that disappeared.

But now there was another folder on her laptop.

Another set of documents on the kitchen table.

Another reason to wake up curious about something besides what was happening to her.

She studied the state's Digital Opportunity plans.

County data.

Potential funding.

Community needs.

Existing organizations.

She started drawing connections.

Healthcare.

Employment.

Cybersecurity.

Education.

Devices.

Digital navigation.

She saw the same thing she had seen throughout her career:

A system with pieces that were not yet working together.

That was familiar territory.

Mara knew how to build connections between pieces.

For the first time since going on leave, she felt competent without needing anyone to tell her she was.

No supervisor approved the research.

No performance plan assigned it.

No Directorate official authorized her to think.

She simply did.

And because she had so much time she had never asked for, she went deeper.

She researched rural communities.

Mapped potential partners.

Read grant guidance.

Studied how nonprofit organizations were formed.

Looked at workforce statistics.

Examined the relationship between technology access and economic mobility.

Thought about older adults.

Veterans.

Families.

Small businesses.

People living thirty or forty miles from the nearest place that might help them.

What began as a way to fill hours became an intellectual obsession.

Then it became a mission.

The irony was impossible to ignore.

Mara was at home because she was not authorized to perform her own job through telework.

Yet from that same home, using the same mind she had been trying to keep engaged professionally, she was designing an organization intended to help other people overcome barriers to participation.

Some days she laughed at the contradiction.

Other days it made her furious.

Most days she simply kept working.

She refused to turn DSOS into proof that everything had happened for a reason.

She did not believe suffering required gratitude.

She would have preferred health.

She would have preferred certainty.

She would have preferred the accommodation process to work without consuming so much of her life.

She would have preferred to build something new from a position of security rather than while wondering what disease might eventually explain her symptoms.

But she had stopped confusing acceptance with approval.

She did not approve of what was happening.

She accepted that it was happening.

And she worked from there.

That distinction gave her power.

One afternoon, after several hours of research, Mara looked around the dining room table.

Medical records.

Reasonable-accommodation correspondence.

State reports.

County statistics.

Notes about nonprofit formation.

Potential program names.

One table.

Three versions of her life.

The patient.

The complainant.

The builder.

For months, the first two had dominated everything.

Now the third was taking up more space.

Mara did not know yet which version would define the years ahead.

Maybe none of them would.

Maybe identity was not choosing one.

Maybe it was learning how to carry all three without allowing any one of them to become the entire story.

She opened a new document.

At the top, she typed the name that had begun forming in her notebook:

Digital Skills for Ownership and Sustainability.

DSOS.

She read it again.

The organization did not exist yet in any meaningful way.

No funding.

No staff.

No equipment.

No certainty.

Mara understood uncertainty.

She had become intimately acquainted with it.

Perhaps that was why beginning did not frighten her as much as it once might have.

Her health was uncertain.

Her career was uncertain.

Her case was uncertain.

Her future was uncertain.

For once, uncertainty belonged to something she was creating rather than something happening to her.

That made all the difference.

She saved the document.

Then she returned to the notebook and wrote:

I started this because I needed something to do while I waited.

She sat with the sentence.

It was true.

But it was incomplete.

Below it, she wrote:

I kept going because I found something worth doing.

Outside, the afternoon light stretched across the kitchen floor.

Another day of medical leave was nearly gone.

Mara was still sick.

Still searching for answers.

Still fighting for her reasonable-accommodation process.

Still unable to work from home in the position she had spent years learning to perform.

None of those facts had changed.

But the hours no longer felt entirely empty.

She had been given time she never wanted.

She was beginning to decide what that time would become.

She hadn't bounced back.

She built forward.