- [Interviewer] Are you scared of dying?
- I'm not scared about dying.
I'm scared about leaving my family.
The idea of not
being there for my son when he needs me
or being there for my wife.
That's what scares me.
(soft piano music)
I'm Brian Hill.
- My name is Layla
- JJ Singleton.
- [Interviewer] JJ, how old are you?
- I'm 34.
- Do you know why you're here today?
What we're talking about?
- We're gonna talk about death
and having a chronic condition that limits my life.
- Just kind of out of nowhere my kidneys failed
and ended up in the hospital
with the end stage renal disease.
- Six years ago, I was diagnosed with a colon cancer
and a year later it came back and spread throughout my body
and they told me it was a terminal diagnosis, incurable.
- [Interviewer] Are you dying?
- Yes.
- I would say yes.
- So Parkinson's, it doesn't kill you.
But the symptoms of it can lead to earlier death.
- [Interviewer] When did you first find out?
- It was at 27 years old.
I was going to college
and started losing my vision, going blind.
And that's when I ended up in the hospital.
And by that point
I had about 5% function left in my kidneys.
And then was really, really lucky and had a transplant
and was doing really well.
And then unfortunately started rejecting.
- I continued to fight, get chemo treatments.
- [Interviewer] But why get the chemo treatment?
- Because I'm not ready to die yet.
There's a lot left to do.
And a lot of people I believe I can help.
- [Interviewer] When you first found out
that you had Parkinson's,
how did it feel in that moment?
- It's a heavy question.
I think leading up to my diagnosis,
I knew I had Parkinson's, my mom had it.
And the moment I was diagnosed, it was almost a relief.
As weird as that sounds,
knowing what's going on with your body
is better than not knowing.
- I was losing an extreme amount of weight.
I couldn't use the bathroom.
And then at the end my skin was turning gray
is when my mom made me go to the doctor.
- [Interviewer] When you found out, were you angry?
- I was, it's like a sense of desperation
or it was kind of just like a freeze, you know?
It was that disassociation of like
"How could this be happening to me?
I'm young.
I'm supposed to have my whole life ahead of me."
And you know,
if I didn't go into the hospital I think when I did,
I may have not lasted more than like another week.
- There are times where I'm very angry.
And that anger, it's terrifying.
It's so terrifying I push it away.
- [Interviewer] Is that good to push it away?
- No, it's not.
And as you can see, as we're talking
I'm becoming more disconnected
because that stress from the anger is coming up.
- [Interviewer] Oh, I'm sorry.
- No, it's good.
It's good.
- [Interviewer] Do you feel like you're dying?
- Some days I really do.
Like some days my body feels
like it's just rejecting and falling apart.
That's the days where I really feel
like it's still controlling my life
and don't have that much time left.
- My body is working really, really hard
just to keep up with the normalcy of what life is.
- [Interviewer] What does it feel like?
- Closest way I can describe it as
the worst your body's ever felt
after like a physical activity,
mix it with having the worst flu you've ever had.
And that's just the very tip of the iceberg.
- Dude, it feels like shit.
So like if you work out real hard
and the next day you wake up and you're achy,
it's like that times almost a hundred.
- Over the last seven years,
I've had many many bouts of wanting to give up.
At one point I was very close to calling it quits
and just committing suicide.
And luckily I had some very good friends
that helped me see that I do have a purpose.
But even still with family and friends helping me,
there is days where it's like
don't know if this life is worth it sometimes.
- [Interviewer] Do you feel
like you live your life differently now?
- Yes.
I do not take things for granted.
I try to live in the moment.
- I try to look at it as a blessing
and knowing that I was given a lens to look in through
different than most.
- I don't take the little things for granted.
Like such as getting up to pick up my son.
Those moments when I'm able to do that
I appreciate them so much more.
- [Interviewer] Has it affected your sex life?
- When I was on dialysis, it did.
Because your kidneys are kind of part of your,
like your sexual chi.
I'd say now it hasn't at all.
And I tell them, you know, that I'm immunosuppressed
and that, you know, we just need to be really careful.
I make sure that they get tested.
- [Interviewer] How has cancer affected your sex life?
- Very, very much so.
Like it's virtually non-existent.
So there's stages where it's just like
it don't enter my mind at all for weeks.
- It takes a little bit more thought process.
Like "Hey, we're gonna do it an hour.
Take your medication."
- [Interviewer] Which makes it so romantic.
- Oh yeah.
Like, "Hey, baby, I just took my pill.
Half an hour and it's go time."
- [Interviewer] Are you scared?
- Not anymore.
I was when I was diagnosed,
but I've came to terms with it.
Whenever it happens, it's gonna happen.
- [Interviewer] Are you scared of dying?
- I'm not scared about dying.
I'm scared about leaving my family.
The idea of not
being there for my son when he needs me
or being there for my wife.
That's what scares me.
- Suffering.
You know, no one wants to suffer.
- [Interviewer] Have you done everything
that you wanted to do?
- No.
Like I'm not afraid to die, but I still wanna travel.
I want to impact more people
in the cancer community with my story.
I want to help better people's lives, really.
- No, I haven't done everything I want to.
I wanna raise my son, I wanna watch him grow up.
I wanna be there for my wife.
And to know that there may come a time
where I can't show up for my family,
those are the moments where I think
I worry about dying early.
- [Interviewer] What do you think it will feel like?
- I hope it's painless.
I hope it's, you know, kind of slipping into the void.
- It's gonna feel like an escape.
- [Interviewer] Is that a good feeling?
- I think it will be.
- The way this condition works,
I mean, eventually I will lose control of my body
and I will be a prisoner in my body.
So I think that time when I do die,
I will feel like I'm being set free
from a body that had failed me.
- [Interviewer] When you pass, what are the plans?
- I don't know.
I like the idea of doing like a end of life party.
And I've told, you know, I've always been very open
about what my wishes are when I die.
You know, I wanna be cremated and made into a tree.
- [Interviewer] So have you made plans?
- They will definitely involve being cremated
and some kind of big, dramatic, goofy gesture.
- [Interviewer] Who's not invited.
- If you have a opinion of me
or I've made an impact in your life, good or bad,
you're more than welcome.
'Cause by that point
I'm not gonna hold anything against you.
- [Interviewer] What asshole's gonna be happy you're dead?
- I don't think anyone.
And I don't know if that's me being just...
(Layla laughing)
Like hopefully not full of myself.
- Oh man.
Who's gonna be happy I'm dead?
I mean, probably someone who's just looking to
take my spot and be with my wife.
- [Interviewer] Do you think about that?
- Not until now.
- [Interviewer] I'm sorry!
- I don't know.
I don't have people that would just be like "I hate him.
I'm glad he's dead."
But if there is out there, at least I'll make his day.
(interviewer laughing)
- [Interviewer] What's one thing
you're gonna miss when you're gone?
- You know, just sensation.
Right?
We get to eat and feel and hug
and have these emotions that are so moving.
And you know, that's all gonna be gone
when you're no longer here.
- People.
Just the experiences that you have with different people,
that's one of the best feelings that you could ever have.
Just randomly somebody comes into your life, changes it
and makes you truly feel like you're special
and they're special.
- [Interviewer] What are you gonna miss the most
when you're gone?
- I'm gonna miss sex, that's for damn sure.
No, in seriousness, I'm gonna miss living.
I think it's something that we take for granted.
And with Parkinson's,
little aspects of living are taken away from me
as the disease progresses.
So I think in a way...
This sounds horrible,
but in a way I'm kind of dying slowly.
I've never put it in that language.
But when I do it sounds awful.
- I started with "Are you dying?"
And you said "No."
But then you said...
- I don't know if I'm...
I'm not dying, I'm just losing my ability to live.
Yeah, take advantage of it.
Life isn't guaranteed to any of us.
Yeah.
Thanks for giving me that perspective.
I appreciate that.