Terminal illnesses, diseases or
conditions that can't be cured and are expected to
shorten one's lifespan. Terminal illnesses have unfortunately
been around since the dawn of time, but with the help of modern
medicine, some diseases that were once considered deadly like polio, tetanus,
and hepatitis A are now curable. Many illnesses remain incurable
though, such as cancer, which is currently the second leading cause of
death in the US and has been around since at least 3000 BCE, with its
first written description found in ancient Egyptian medical journals. It's unknown exactly how many people
in the world are currently living with diagnosed terminal illnesses,
but more than 1.7 million die from chronic diseases
in the US each year. My name's Anthony Padilla and today,
I'm going to be sitting down with people who have terminal illnesses,
learn what it's like to live with this diagnosis and how it can change
one's perception of life and death. Are these individuals now driven
to live life to the fullest with each moment they have left, or
is the constant reminder of how fickle life is too upsetting for
them to find their moment of peace. [music] Hello, Jeremie? Hello, Anthony? Ruthie. Hi. Kalie. Hey, Anthony. Thanks for having me. Thank you so much for coming on
here and teaching me about the world of living with a terminal illness. I hope that I can add some
value to this conversation. What do you consider yourself? A person living with a terminal illness? Someone with a new perspective of life? I guess I am a person
with a terminal illness, but I just call myself
a cancer patient. Both of those but more
than that a survivor. Someone who has lived
life without considering what a retirement fund
would look like. That's helpful. That's always on my mind. What type of terminal illness do
you have and what are some of the symptoms that go along with it? I got diagnosed with a
stage 2/3 astrocytoma, which is a type of brain tumor. As of right now, I don't
really have many symptoms. It's almost feels like
my life is normal. I just have to take seizure
medication, but that's about it. I live with a disease called cystic fibrosis. My body has the inability to
flush out excess fluids or mucus. This excess fluid, airway
surface liquid or mucus starts to build up in the lungs. What that does is it provides
a breeding ground for bacteria to form and house and spread. Over the span of my entire lifetime,
I've been battling lung infections. There is a decline in lung
function that happens over the span of an X
amount of years. For myself at 32 years old, my lungs
function at about the 50% range. That one full deep breath in is
100, you are only able to ever feel like you're getting half a breath? Yes. Langerhans cell histiocytosis. Everyone has these Langerhans
cells in their body. Some of them are just
dormant and mine are active. They produce more white blood cells. Those are the things
that fight off infection. All of my white blood cells are
fighting each other because they don't realize that the excess
of them is what the problem is. I'm tired all the time. I haven't had a pain-free day
since I can't remember when. When did you first start feeling
symptoms and when were you diagnosed? At 18 months old? Before you ever showed
symptoms or anything? Well, I mean, I was showing symptoms
in terms of, I was having a hard time with my digestion as a baby. One of the weird quirks about the
disease is that we tend to lose a lot of our electrolytes through our sweat. It's very easy for us
to become dehydrated. Anthony, if you were here and I asked you
to, just to take a little lick of my neck, which I'm sure you would-- I'd be delighted. Absolutely. You would then lick my neck and
go, "Wow, Jeremie, your skin tastes extraordinarily salty." Somebody told my father this, where
he was like, "Hey, I heard that people with CF have really salty skin. Why don't you just like
this is little baby." He's like, "Take them into the bath,
give him a nice wash, clean him up and then lick the back of his neck." My dad's like, "Yes, good idea." He takes me into this bath and
he licks the back of my neck and it tastes extremely salty. My dad's heart ripped in two,
and he broke down onto his knees and he started bawling his eyes out because
in that moment, knew in his heart of hearts that this was going to be CF. Of course, later that week, I
went in for what's called a sweat test and it turned out I had CF. Having been diagnosed that
early, CF is all that I know. May of 2011, and by the time I
noticed that something was wrong, I literally fell out of my car when
I was trying to step down out of my truck and just
doubled over in pain. It turns out that I had
a huge hole in my rib. I had emergency surgery in November of 2011
and got a diagnosis a couple of days later. When I found out that I had the seizure,
then I was able to look back a year before and remember something
also weird that happened to me, but nothing that led me to believe that
there was any reason to go to a hospital. When I found out it was a seizure,
I went and the other first thing to do is do a CAT scan and
this big white tumor showed up. Where were you diagnosed that day? They knew that I had to get to surgery
because it was giving me seizures. When they do the surgery, they
take out as much as they can. They send that tumor off for a biopsy. That's what let me know
what type of tumor it is. Also, it helps them determine the
stage based on how many of those cells are reproducing and how quickly. What was your reaction
to seeing that tumor? Actually, I laughed. You laughed? My boyfriend, he put his hand on
my leg and was ready to console me. I was just like, "What am
I going to tell my mom?" Did it almost not seem real
or not seem like it was anything to be worried about? No, it didn't feel real. Do you remember the moment when
you found out that it was terminal? After I recovered from my surgery
a little bit, I had to prepare to get radiation treatments. I had to go and meet
with the oncologist. it was probably like the second
thing he said to me was like, "Yes. This tumor has a survival
rate of about 10 years." A dark hole of depression and anxiety, not
being able to be the person that I always was. I was taking care of
myself and everyone else. When I was 10 years old, I had found
a pamphlet in my home that was titled, "All about cystic fibrosis." There was a sentence in there that went on
to truly kick me in the center of the chest, which was, "Cystic fibrosis
is a fatal genetic disease." Late '90s, mortal
combat is like my life. I'm fully aware of the word
fatality and what [?] means. I went on to read the rest
of the sentence which said, "The average life expectancy of someone living
with cystic fibrosis is 30 years of age." What was your reaction to
hearing that prognosis? Yes, It hit me like a ton of bricks. I'm 10 and this is what I've done
in my life so far and I can only do this much that I've done in my life
two more times and then I'm dead? Did you talk to your parents about that? No. I didn't say a word to my parents. You were just living with this knowledge
now that your life was much more finite than you ever had to take in. I held onto a lot of deep-seated
anger towards mom and my dad. I never knew why. I know now, but at the time, I
couldn't quite put my finger on it. My parents never knew that I knew
until I was about 16 years old. The way that they found out
that I had known that CF was a fatal disease, was by finding a
autobiography that I wrote when I was 16 as a part
of a school project. I wrote this out and there was an
entire section there about my future. Man, I must've been listening
to My Chemical Romance or something at the time. I got Emo in this
section called my future. My teacher had read this
and they went, "Oh, shit." My teacher actually
called my mom and said, "Have you read
Jeremie's autobiography?" My mom was like, "No, I
didn't know what this was." She was like, "I highly
suggest that you read it." My mom, instead of coming
to me to ask me to read it. She went snooping through my
room and she found the project. Is this your first time
writing about this? You didn't have a journal on the side
or anything that you wrote about it? At this point, I had never
written anything down. I think it was just stream of
consciousness that just poured out of me onto the paper. This is what it looked like. When it comes to thinking about
my future and what I want to do with my life, when it comes to
getting married or having kids, I don't really
know what to think. About 40% of children with cystic
fibrosis live beyond the age of 18. The average life span for those
who live to adulthood is 30-33. If you think about it, what's
the point of getting married. If I'm only going to live for a
few years through the marriage, and having a kid would be pointless,
unless I wanted them to grow up over half their life without a dad, these
things are hard to think about. It makes me feel useless. That's extremely vulnerable. I get why that teacher read that and
was like, "I got to call this kid's parents and let them know that he's
expressing his deep internal battle." My parents were told, "Don't say
anything, because when he's ready to talk about it, he'll come to you." That never happened. By the time I was 16, my
mom, my dad, they were like, "He hasn't said anything yet. Where is he? Where's this conversation?"They
think to themselves, "Holy shit, he's clearly
thought this through. How long has he been sitting on this?" They made that decision for you,
not necessarily because they thought you couldn't handle it, but because
they were told that that was the only way that you would live your most fruitful
life with the years that you did have. We as a culture need to change the
way that we feel about the idea of death because it is this thing
that is completely unavoidable. The more we try to push it away and
pretend that it's not something that's going to happen, the more harm it's
going to do to us in the long run. The more we're able to embrace
and accept the idea that this is coming, the more we'll be able to
live our lives to the fullest. Before we continue learning
about The World of Living with a Terminal Illness-- I was very, very sick and I
was in the intensive care unit, and I received a package. I was very drugged up
opening this package. I open the package and I pull out a
pink and black triple push strap-on. I just wanted to take a moment to once
again thank all of you for keeping the comments on this video so encouraging
for our guests as I cover topics that are highly sensitive like this one. All profits from this video will
be donated to the American Cancer Society to help their fight to attack
cancer from every angle. They provide healthy lifestyles to
help prevent cancer, research cancer, and its cause is to find more answers
and better treatments, fight for life-saving policy changes and provide
everything from emotional support to the latest cancer information for
those who have been touched by cancer. For more information or if you
want to make a donation of your own, I'll include a link to the
American Cancer Society's website down in the description below. Now, back to The World of
Living with a Terminal Illness. Has your perception of life and death
changed since receiving your prognosis? Everybody that we know and everyone
that we don't know is going to die. Again, it's the one thing that we truly
all hold in common with one another. It's also, it just happens to be,
especially here in the western world, it happens to be the one thing that
we all avoid, that we all fear. It's become something that we are
almost ashamed of, the reality. Maybe it's because we're taught that
from kids that it's too scary for us. Then we go into adulthood
and there's never a chance for us to really sit with it. The furthest that we might go is
an open casket viewing of some sort and even that is so rare. For the most part, we just shield
our eyes, fake like it doesn't exist, and live our lives just
assuming that we will never die. I am one who embraces the idea of death. I think that death is a--
There is a beauty to death, there is a beauty to an ending. You look around at other cultures
and other ideas of what does it mean to die and what does it mean to take
this vessel that we have that is our body and to maybe perhaps give
back to the world that we live in. There's these mind-boggling
ideas that exist out there. Have you ever heard of
a Tibetan sky burial? No, can you explain that? This is like one of the
most badass things I've ever heard in my entire life-- It sounds pretty sick, just Tibetan
sky burial, just the three words together, they're like poetry. Somebody in the community dies
and there's this person within the community whose job it is to
take the body out to this field. They lay the body out in this
ritualistic way with a cleaver, and they chop it up into smaller pieces and
lay it out in a way where it's presentable. While this is going on, off in
the distance, there's hundreds of vultures that are waiting. The vultures all flood in with
immense vigor and they pick apart and eat up all the parts of this
body and fly away up into the sky. You are literally giving what you
have been made of back to the earth, back to the beings of the earth. When I'm dead, when I'm gone, my shell,
I don't have any attachments to it. Take it and use it however you need to. To give it back to the earth in
that way, where a bunch of creatures who need that sustenance, feed off
of me and fly off into the sky, that's the most anime badass [beep] . To me, that feels way more beautiful
than the idea of claiming a chunk of land underneath the earth that
fills that space with concrete and junk and things that aren't needed,
that don't serve the land that exists there to just house my skeleton. I don't need that. Since receiving this prognosis, does talking
about death make you at all uncomfortable? For me, talking about death,
I think about it every day, so it's not difficult to talk about, but I
don't want to upset the people I'm talking to, so I try to be mindful of that. It might be easy for me to talk
about it, but it might not be easy for them to hear it, so
I try to find a fair balance. Does it look like talking about
death makes me uncomfortable? No. Dude, it is my favorite thing to talk. Talking about death and talking about
cinema are two of my favorite things. I would geek out on this
shit every day, all day. I love it. I do love it. Do you have a bucket list
or anything like that? It's funny you say that, because no. No? If anything, the things that I
started doing after I got my prognosis was just doing the things that I want to do
and not necessarily come up with this list of these amazing things that you need to
see before you die, because I don't know if I would actually want to do those
things or if those would be things that people on the internet just want to do. That could almost be you living for
someone else's dreams if you start going for those kinds of big, showy things. Instead, I just try to be honest
about what I want and be like, "Yes, this is what I want. I'm going to do this." I started traveling more to get tattoos. I've collected a lot of tattoos
since I got my prognosis because I've always liked them and
I was just like, "Screw it. I'm just going to do it." Then I started doing that. Are there any things in your daily
life that you used to stress about that no longer seem something
worth giving your stress to? Things that don't involve or concern
me, because I don't have time for anything that doesn't bring me joy or
that might put me in a negative mindset. If it doesn't directly involve me
or my family or my sons or something that I'm passionate about, then
I try not to give it any thought. Are there any unexpected ways
that having a terminal illness diagnosis has brought you more
clarity or contentment in life? Having a direct conversation, a
one-to-one conversation with the people that I felt a deep desire to forgive,
and that was with my mom and dad. I felt like I needed to forgive
them for the harm that I had felt that they had done to me by not
expressing to me the fact that cystic fibrosis is a fatal disease. That was one of the most pivotal
moments of my entire life. How did your life change most
once you came to terms with this? Because that probably also
was a moment when you came to terms with your diagnosis or
with your prognosis as well. I've said this a thousand times, and
I'll say it a thousand times over again. Cystic fibrosis is hands-down the most
incredible thing that's ever happened to me, because it's given me this
ability to really see the world through this lens of appreciation
that is so vast, because again, and I think I said this earlier. I've meditated on the idea
that I'm going to die. That doesn't make me special. We're all going to die. Every single one of us are, but because
I've been born into this body that has some sort of glitch in the genes,
I've had to sit down with myself and think about the fact that I'm probably
going to die before all of my peers. If that is the case, how do I
want to spend the rest of the time that I have here on this earth? Do I want to squander it away and
mope about and waste time crying about the shit that doesn't matter, or do I
want to just look forward and do every single thing that I can to make the
most out of the time that I have here? Pick up your iPhone right now. Go to your clock app. I'm going to do it right now. Let's do this. Jeremie Anthony put nine
and a half hours from now. Okay, got it. Now, hit start. 9 hours, 29 minutes, 53
seconds counting down. That's how much time you have from right
now until the time you're going to die. What are you going to do in that
time to ensure that you feel good about how you are
going to exit this world? What are the things that you feel like
you need to say that you didn't say yet that you've been putting off to the side,
just take the next nine and a half hours to do the things that will make
you feel like, you know what? I tied a bow on the
day and I'm good to go. With this timer counting down here,
I immediately want to reach out to my loved ones, make amends with
maybe some old friends who maybe we have some unsaid things that
just have never been resolved. It makes me want to treat people well,
make people excited about their day. Maybe give people a reason to smile. It makes me want to get off social
media and just be in nature and really appreciate the things in
my day that actually matter to me. Not because I'm trying to set myself
up for a future that I may never even get to experience, but because all
that really matters is the here and now when you have this timer counting down. This doesn't have to be a thing that
exist passively in the backend that you don't need to think about as
scary as it is to think about it. It exists. It's there. We all have that timer above our
heads showing us exactly how long we have till we take our last breath. Your life is going to end and
that's not a scary thought. That is a truly beautiful
thing to think about. Do you ever feel like people
underestimate what you're capable of because you have a terminal illness? I think that they think that I'm
constantly depressed and upset. When people see me as happy and
having fun or talking positively, they call me
inspirational or something. I'm like, "I didn't do anything." There are lots of people
that say something positive every once in a while. Exactly. I think they're surprised
when I can be positive. Do you think the US health
care system is as efficient and accessible as it should be? No, absolutely not. The criticism I always
get from my opinion is that, "Well, America has the best hospitals
and the best doctors in the world." That's probably true, to be
honest, it's probably true, but only if one can afford it. Two, what, are able to travel
to New York City where you can see those doctors because
those doctors don't exist in the countryside,
like where I'm from. If I had to get everything done that I
got down here in Tokyo back home, that would have required an insane amount
of driving to the hospital because I live in the countryside in Pennsylvania and
I don't even know where the best closest affordable hospital would even be. How do you think that the US
could learn from the medical practices in Japan at least? Americans are much more likely to
donate money to charity than a lot of other countries, but when it comes
to doing things like paying taxes or paying into these socialized health
care systems, they turn to this like, "Oh, I don't want to pay for other
people's stuff," type of mentality. Here in Japan, it's more communal. People realize the greater good
of doing these types of things and they see the benefit for themselves. They're able to go to the hospital and
get the treatment that they need and no one really ever complains about it. I wish that Americans could see
the benefit of this type of system and not just assume the worst. I hear that people say like, "Oh,
there's going to be long, long lines." I'm like, you can have a mixture of
privatized and socialized health care. It will be fine. Allow the rich and powerful people
to continue doing what they do, but everyone else I feel would greatly
benefit from having access to health care like they do in other countries. It's so strange that so many of us
get caught in all the scary, what-ifs, what could happen if something
changes when there is a period of transition that could happen where
both options are readily available. Exactly. Fang wants to know what the worst way is
that anyone's ever tried to comfort you. I was very, very sick and I was in the
intensive care unit and I received a package and this care package did
not have a return to sender. I was very drugged up
opening this package. I opened the package and I pull
out a pink and black triple push strap on and so I pull this
triple strap on up all drugged up. I don't even know where I am
and so I go, "Huh, what the--" The nurse looks at it and goes,
"Well, then," and just exits. [laughs] Not even worth
finishing checking your vitals. She was like, "Your O2 stats are good. Your blood pressure. I'll get that tomorrow. I'm good." She was going to get her
vitals checked at that point. I still to this day have no idea who
sent that to me, still to this day. That was like three years ago. Some of those days was one of
the best moments of my life. Caroline wants to know if living
with a terminal illness has made you more willing to take more
chances or more risks in your life. I feel like I'm more willing
to just be honest to people and say what I feel I need to say. Whereas maybe
before you'd be like, "It'd be uncomfortable if I addressed
this tension," or something like that. Totally. It shaped my life in
many different ways. I'm not more inclined to risk as in-- Putting yourself in
harm's way every day. Yes, riding a motorcycle
without my helmet on or driving the car with my seatbelt. I do think that it's completely
shifted the way that I think about things that most people might look
at it and think, "Man, not for me." Whereas I go, "Maybe not for me,
but also, could it be for me because it sounds exciting and if it's
exciting and it makes life more worth living why the fuck not?" Swipes Wife Jess wants to know
if when you're planning for the future if planning for your
funeral is part of that process. In the beginning, maybe I did. I would be like, "I want to be cremated
instead of buried because we're going to run out of land on the earth someday." There you go, thinking about the
Earth's wellbeing rather than your own. When I thought about it a
little more, I realized funerals aren't really for the dead. I'm going to be dead,
they're for the living. When I thought about that, I
realized just whatever my family wants to do, it's for them. I want just a bichon party that
I know my wife is going to plan. Then in terms of what happens
to my body, I really do want my body to give back. Do what you will with this vessel
as long as it does something good. If that's donating it to science or if
that's feeding it to a giant hoard of hungry vultures, I'm okay with that. I really am. If there's anyone watching, who has
been diagnosed with a terminal illness and is having trouble coming
to terms with that, having trouble accepting the fact that their fate is so much
shorter than they once assumed it would be. Is there anything that
you'd want to say to them? If it sucks. There's nothing fun about
living with a terminal illness. There's a lot that goes
with that, that sucks. Having to express that to
your loved ones, to your friends, your family, having to juggle the
thoughts that come to mind when you have to think about your own mortality
in such a short span of time. One thing that I will say that I
truly deeply believe in is that every single experience, even
the ones that are so hard comes with a host full of experiences
that are so perfectly comedic. It is so worth it to root out and
mind for the humor that does exist within that human experience. If we are not able to laugh at
the hardships that we go through, then what's the point? Humor as a matter of perception. That's why some days you have
your good days, you laugh a lot. You have your bad days, you're
not in the mood to laugh. It really is that perception. There might not be anything
different between the two days. It's your perception. What's the biggest misconception
about people with terminal illnesses? That we're fragile, broken shells
of human being that can't do anything for ourselves anymore. You still can do things for yourself. You still want to do
things for yourself. There are some things that I need
help with, but for everything that I can't do and I need help with,
I will go out of my way to find two or three more
things that I can. All right, you have five seconds to
shout out or promote anything you want, Directly into camera, go. Find me on YouTube at Kalie Chips. I encourage you to reach out to
anyone you know going through something like this, whether
you're the sick one or not. Check out Sick Boy Podcast. It's me and my two best friends
talking to other people living with chronic or terminal disease. Love you. Snapchat and my Instagram
is both PrincessbeautyMUA. Look into and donate
to Black Lives Matter If you like this shit, then
you definitely want to be subscribing to Anthony Padilla. Hit that subscribe button below
because you know what's up. Hit it. Don't quit it. Just hit it. Hit it. Thank you so much, Ruthie. I feel like I understand the world of living
with a terminal illness just a little bit more. Thank you for giving me
the opportunity to share. After spending the day with these
people, with terminal illnesses, I've learned just how strong and
resilient one must be to not only receive this diagnosis but to bravely speak
about their deeply personal stories in front of millions of people. It's important to remember that
everyone has a personal battle to fight and we should all be accepting and
supportive because you never truly know what may be occurring behind the scenes. See you later.
Bye, guys. Pres a like. [music] To make it really, really hit
home, when that timer goes off and you get that like
[sound] or whatever. You're right. I want you to take a fist and just punch
yourself in the face as hard as you can, just so that you have an idea of
like, maybe it hurts a bit when you die. Normalize it, just punch
yourself in the head. I am excited. my nose is ready for it, man. I am ready to have to snap
some cartilage after this.
