Alice Wong

I had some opioids earlier, but fun fact, they cause constipation, so I quit them and take Tylenol only when necessary.

I miss the fentanyl I had in the hospital, which was delightful, utterly delightful.

I called fentanyl, Fenty, and I said he was my boyfriend.

I miss Fenty very much.

It's been a lot.

My name is Ella.

Efficient, fast, and a very high quality.

Why not try me out with your own words?

So Heather is just the one I hate least.

It is robotic, clinical, and white.

I just tolerate her and I bet she tolerates me.

Ha ha ha.

Oh, see what I did there?

I typed ha ha ha to simulate actual laughter.

And while it works to some extent, it feels robotic and hollow to me.

I miss laughing and all the sounds I can make that make people laugh.

I wish I could laugh because isn't that also a collective experience?

I think that's the heart of it.

Being able to join with others and sharing an emotion the same way.

There is a device I could attach to my ventilator where it will potentially allow me to speak called the Passy Muir Valve.

Hi, Dr. Rosen.

Happy New Year.

And redirects airflow through the vocal cords and nasal passages so a person can speak.

Like me.

I felt a kinship with him in that regard.

Her vocal folds are moving.

She's definitely moving.

It just wasn't enough to... Yeah.

So I guess my muscular dystrophy has made my diaphragm weaker, probably especially these past few years.

It's fine.

Let's still try again.

One more big one.

I'm so curious if he had disabled friends or was connected to community.

The worst feeling ever.

Just laying in the bed and not able to speak.

The way David died is one of my biggest nightmares.

Oh, wow.

Falling and having your ventilator disconnected or malfunction while in public.

But these systems will never replace the ability to scream for help, and the loss is real and it's terrifying.

I was a pretty sassy young person, so I laughed when I heard David's threat to sue his school.

Maybe that's one aspect of being disabled in a non-disabled world.

I guess we have to be tenacious and pretty bearing in order to get the bare minimum, which in many ways drives us in our ambitions.

He created something out of a personal need that helped many disabled people, which is so rad.

My stance hasn't changed after David's mom reflected on that phrase.

Yes, David and I both lost our voices and he was able to gain it back thanks to the invention of his valve but let's say he wasn't able to speak again.

He would still have dignity despite mourning the loss of something so close to his identity.

I miss my voice every day and am frustrated by how I communicate and the way I sound on the radio right now but I still have dignity.

This may be too much to ask from something artificial, but at the very least, maybe when talking to friends who knew me in the before times, they will feel like it's the same me.

I agree, it's like a reclamation of my old self.

And the old self that was always a part of me that didn't get a chance to come out.

Of course, I can't go back, but this is a tool that might be helpful adjusting to this new way of existing.

I wonder if a good analogy is with cosmetic surgery.

This is something I don't really need to live, but

It makes me feel a bit better about myself.

Good to see you.

I think the inner me has changed because I still cannot be my full self.

And by full self I mean my old self and this is a conflict that I struggle with.

I lost a way to express my personality, humor, I lost the kind of wit that comes from my ability to quickly respond or interject something vital during a chat.

I lost my ability to debate and smack someone down with an argument who deserves it.

I lost that sense of freedom, looseness, and messiness.

I am still me to some extent from the before times but I miss the old me.

I am changing, we all are changing, and I hope I am becoming fuller and a truer reflection of the inner me but that's a work in progress.

As I say less with my text-to-speech app, I am more into my thoughts.

Perhaps I am more precise and concise on what I want to say.

For me, everything I process is more vital, urgent, and serious.

If only you knew what's really going on inside of me, haha.

It's also a more perceptible, gentle world.

I am sensing and seeing and feeling more now that I am in the solitude of this silent world.

I am taking in a lot and perhaps because I am not communicating fully, I am absorbing things more than before.

I am a party animal and we do meet up at events or parties.

A luscious piece of sea bass.

He was eating and we were looking at each other in this moment of pleasure and understanding amidst the din of chattering, speaking people.

We had a conversation that was complete in itself.