- Have you heard of hospice?
- No.
- Basically, the big thing
is that two doctors have to certify
that your expected lifespan is six months or less.
- Oh.
(melancholic music)
- Hi, it's so nice to see you.
It's been like more than a year, I think.
- I have a genetic condition called mitochondrial disease,
which has shut down my organs.
Did you know anything
about who you're gonna be meeting beforehand?
- No.
- You guys sprung one on her.
(laughs)
- How have you been doing, Julia?
- I've been doing okay.
How have you been doing?
- I've doing good.
Well, I've been playing animal crossing.
- That's good. (laughs)
- So what has changed since we last talked to each other?
- I guess a lot.
My condition has progressed faster.
And so I'm now on something called home hospice.
Have you heard of hospice? - No.
- What do you think it means?
- I feel like it means
that you're on a different medication or something.
- Okay, interesting.
- Well, what I understand hospice to be is,
you know there's nothing you can do
and at that point you're kinda doing more harm than good.
- That is, at least for me, exactly what hospice is.
My body has deteriorated enough
that now we are doing end-of-life care.
Hospice is basically where you don't do any more surgeries.
There's no cure.
It's all about symptom relief, feeling better,
and quality of life being at home.
- Ooh, that's how you're gonna be for the rest of your life?
- Mm-hmm, mm-hmm.
- That's kinda sad
but I think that's what they did with my dad
when he was in the hospital.
You just stay there and you don't take the medications
until you pass away comfortably.
Is that hospice or what would it be?
- It could be.
Hospice can be in hospitals.
But basically, the big thing is that two doctors
have to certify that your expected lifespan
is six months or less.
- So how did it feel to hear that,
the six months from two doctors?
- It's really tough.
And the toughest part is my condition is so up and down.
I was septic in April
and my body could've just decided to have given up that week
and I could have died that week.
And that was not farfetched.
And I went to the hospital
and you know what they told me is,
"You really need to be in the hospital,
but in the midst of this pandemic,
your parents can't stay with you.
It's too dangerous."
- I think a stay at the hospital alone would be very creepy.
- If you were put in that situation,
do you know what you would pick?
- It'd be very hard to not be with our parents
and it would feel bad for me
'cause I am like a mommy's girl.
So I really stay close to her.
(breathes heavily)
I'm trying not to cry 'cause I have makeup on.
- (laughs) It's all right, it's very scary.
- What's the hardest or saddest thing
that you're facing right now
and what are some things you do to overcome that?
- I think the hardest thing
is knowing that my body is deteriorating
and feeling like my mind doesn't agree.
Jules, are you afraid of death?
- Well, I'm not really scared of death.
I'm scared of the way I die.
Like if I were to get hit by a car,
then I would be scared, you know?
But if I were to just die in my sleep,
then that would just be it.
- If I could guarantee
that I would pass peacefully in my sleep,
I would have so much of a weight lifted off of me.
But death, it is so unknown.
My best friend who also had mitochondrial disease,
we just were sisters and we loved each other incredibly.
So she died in September of last year.
She didn't get the death that she wanted.
So I'm gonna get teary.
For me it's all about making sure
that I just listen to my body
and that I let things be as they are.
- I know you, last time you talked about all the things
that were on your bucket list.
- I brought along my bucket list.
Let me pull it out.
Meet Ellen, duh.
Spend time with horses, watch a live birth.
I love babies.
And if I were to get cured like tomorrow,
I'd probably wanna be like a midwife or something.
- What are some things that you've completed on it?
- Ellen still has not reached out,
so that's bizarre. (laughs)
- Whoa!
But I since have seen a birth,
I've gone horseback riding.
- Mom, can I show her the picture
of her riding the horse real quick, please?
I was thinking of you since we are gonna have the Zoom
so I drew a picture of you riding a horse.
- That's so good.
You know what?
My mom is here and I'm gonna have her grab a picture.
So after I saw you, I actually got to ride a horse.
Can you see that?
- Wow, cool!
- On my bucket list was to see a birth.
So a close family friend gave birth and I got to be there.
My view on death changed a little bit
after I saw this baby be born.
It's nice to think about as somebody's life goes,
immediately, somebody's life enters
and they get the whole new world
that I may have lost, you know.
(melancholic music)
It was so great to see you, Jules.
- Yeah, I'm really grateful to see you again.
- I really enjoyed the time that we spent today.
- Bye, Julia, I hope to see you better next time too.
- (laughs) Well, thank you for that.
- Julia, it was such a treat for me to get to join in
from halfway across the world and chat with you
and all the kids again.
And I'm so happy that we got to see each other.
How are you feeling?
- I am feeling exhausted, but really good.
That was a good one.