The Grief of Disability

There are days when I am perfectly capable of talking about disability in practical terms.

Accessibility.

Mobility aids.

Caregiving.

Energy management.

Accommodations.

I can tell you what I need. I can advocate for myself. I can explain why I use a wheelchair. I can teach other people about accessibility and chronic illness.

And then there are days when I am just tired of being disabled.

Today is one of those days.

I sat in my bathtub today and realized I didn't have enough energy to get myself out.

Not that I didn't want to get out.

I didn't have the energy.

Eventually, like I do every day, I scrounged some up.

That's what so much of my life feels like now.

Scrounging.

Finding one more tiny reserve of energy because something still has to happen.

I have to get out of the bathtub.

I have to eat.

I have to get dressed.

I have to navigate an inaccessible entrance.

I have to order groceries.

I have to find a caregiver.

I have to wash the dishes.

I have to get myself to another appointment.

Again and again, I find just enough.

But lately, there seems to be less and less to find.

I Used to Be Able to Do So Much

This is one of the hardest things for me to explain to people.

I used to be able to do so much.

I had a career.

I was a professional.

I could work long days and solve complicated problems. I could manage a household and responsibilities and appointments and all of the ordinary pieces of a life.

I was smart then.

I'm still smart now.

But my body has changed what I can physically sustain.

And there is grief in that.

Not because disabled lives are inherently tragic.

Mine isn't.

There are things about the life I have built that I genuinely love.

But loving my life does not mean I have to pretend I haven't lost anything.

I have.

Disability Grief Doesn't Happen Once

I think people sometimes imagine disability grief as a process.

You become disabled.

You grieve your old life.

You adapt.

You accept your new reality.

And then, presumably, you move forward.

That has not been my experience.

Because what happens when the reality you're supposed to accept keeps changing?

What happens when you adapt your life to one level of capacity and then discover you have less?

You make accommodations.

You reduce your workload.

You use mobility aids.

You ask for help.

You restructure your business.

You stop doing certain things.

You build a life around what your body can currently sustain.

And then your body says:

Less.

So you adapt again.

And again.

And again.

There is grief every time the circle gets a little smaller.

Sometimes the Right Decision Still Hurts

Today I decided that September will be my last month renting my office.

There are plenty of practical reasons.

I'm moving my Reiki work online. I don't need a physical treatment space anymore. Maintaining another space takes money and energy. There have been ongoing frustrations with the building.

Closing it makes sense.

But underneath all of those logical reasons is another truth.

I wanted to be able to have the office.

I wanted a place outside my house where I could work.

I wanted enough energy that maintaining one small room didn't feel like another thing my body couldn't afford.

I wanted the choice to be about what I wanted next for my business, rather than another calculation about how much energy I have left.

Sometimes accessibility looks like making your life smaller enough that you can survive it.

Sometimes that's absolutely the right decision.

And sometimes you still hate that you had to make it.

The Work Doesn't Disappear When My Capacity Does

I lost my caregiver two and a half weeks ago.

The work she was doing didn't disappear when she left.

There are still groceries to order.

There are still dishes.

There is still laundry.

There is still a house that needs care.

There are still appointments and errands and administrative tasks.

So I have been picking things back up.

Not because my body suddenly became capable of doing them.

Because somebody has to.

And now I'm exhausted.

I'm searching for another caregiver while desperately needing the energy that finding a caregiver requires.

That's one of the cruelest ironies of needing support.

Sometimes accessing support becomes another job.

You have to find programs.

Make calls.

Write posts.

Find candidates.

Interview people.

Follow up.

Coordinate schedules.

Explain your needs.

And somehow you're supposed to do all of that precisely because you don't have enough capacity to do everything yourself.

And Then There Is the Grief of How People See Me

This part is harder to talk about.

I am tired of feeling like I am in the way.

I am tired of being the person who has to move.

I am tired of entering a space and immediately having to calculate whether there is enough room for my wheelchair.

I am tired of people seeing the chair and making assumptions about the person sitting in it.

Sometimes I want to scream:

I'm still fucking smart.

I was a professional before I became visibly disabled.

I am still that person.

My wheelchair did not remove my education.

It did not erase my career.

It did not take away my ability to think critically or solve problems or understand complicated things.

But sometimes people interact with me differently now.

And I notice.

I notice when someone talks around me.

I notice when someone assumes I can't do something.

I notice when a space was clearly designed without bodies like mine in mind.

I notice when I am expected to be the one who moves out of the way.

Knowing that other people's assumptions do not determine my worth does not make it painless to experience them.

I Am Tired of Watching Everyone Else Live

There is another part of disability grief that I don't think we talk about enough.

Watching.

Watching other people's lives expand while yours keeps requiring negotiation.

People go to work.

They travel.

They make spontaneous plans.

They clean their houses.

They run errands without calculating how much energy they'll have afterward.

They get busy.

They heal.

They move on.

And sometimes I feel like I am standing still while everybody else keeps moving.

Except I'm not actually standing still.

I am working incredibly hard.

It's just that so much of my work goes into maintaining the basic infrastructure of my life.

Managing symptoms.

Finding care.

Navigating accessibility.

Getting medications.

Coordinating appointments.

Managing energy.

Finding caregivers.

Figuring out how I'm going to accomplish something my body can no longer do the way it used to.

There is an enormous amount of work involved in having a life that, from the outside, can look like you're doing very little.

Today, I Don't Need to Make This Inspirational

I know there are beautiful things about disability community.

I know mobility aids create freedom.

I know adapting is not failure.

I know asking for help is not weakness.

I know my worth has nothing to do with how productive I am.

I believe all of those things.

And today I am still angry.

I'm angry that my body hurts.

I'm angry that my hands hurt.

I'm angry that I need help.

I'm angry that the help isn't currently there.

I'm angry that I keep having to give things up.

I'm angry that my energy seems to be getting smaller instead of bigger.

I'm angry that something as simple as getting myself out of a bathtub can require energy I don't have.

And I am grieving.

Maybe disability grief doesn't always need to be transformed into something beautiful.

Maybe sometimes we need somewhere we can tell the truth:

I love parts of the life I have now.

I am still building a life worth living.

And I fucking hate what I have lost.

All three can be true.