- What is it like, to have a body that's just transitioning to bone? - It sucks. (laughs) Yeah, it sucks It's because like, one thing about really in the chronic world is
that I'm always grieving. So like, when I was eight
years old, I lost my elbows when I was like four, I lost my shoulders. You know, when I was in
going to puberty, you know I got scoliosis and that's really severe when I was 18 I lost the ability to walk and you know, there's nothing i can do about it. It's like at first you like
not accepting of the situation and then you keep thinking
like, what did you do wrong like, why do I deserve this, all of then But then after while you just
have to accept that the body doing it own thing. And it is very conflicting because like if you're a good person,
like you're thinking like, oh I don't deserve any of this Why am I doing wrong? Like, what do I have to do better? Like, why is it happening to me? So for me, a lot of
questioning my religion questioning my faith, questioning
like what is around me maybe I was mean to this person, and God is giving me this bad problem but after a lot of being in bedrest for five years in my
lifetime, I'm about to be 30 so that's one, six of my life, I think or something like that. I'm not good at math, but, you know like after five years of being in bed like I had so much time to think. And in my case, I don't think God exists because why would I wanna believe in some person that creates
this terrible disease? Like if I was creating a
movie, I couldn't even think of something as horrifying
as this disease, like my body literally growing bones
as we speak, you know the only body part that I can really move
along are my fingers and my wrists, everything
else is locked into place. - You ready for this? - Yeah. - If somebody wants to be your friend what's the first thing they should do. - Oh I hate this question - Why do you hate this question? I know you watched our videos. - It's so cheesy. - It is cheesy, but it's like kind like a playbook for
people who aren't familiar with you who don't know a thing about it. - I know, but I think it's cheesy like you know, in a
regular situation though like no one friends with each other just because they like each other that we have to be like a reason for it. - You think so? - Yeah, its like we grow up
in a world where it's like it has to be like an asset
attached to them unfortunately, hey, I never kissed a girl before and you know, I'm 29 years
old now will people say, oh it's your personality It's this or that. And then they'll show like they'll show other disabled creators Like these people have you know interracial relationships
and they made it work. Okay, that's one, two, five, 10 people. There are millions of
disabled people out there that are probably in my situation. What I'm trying to say is that there are some people that
have great personality but sometime, you know, like
my disability is so severe that it counteracts all of that. So sometimes a personality
isn't good enough. And there's gonna be people that are in in terrible relationships
that do find love. And that's amazing, but also millions of other people that
are not a relationship but you'll never hear of them they don't have social media and such or they don't talk about it. You also really don't wanna talk about that you're single they gonna make you even
more desperate about it. I'm literally like a 70 year
old than a 30 year old body and I'm just gonna get
worse as we progressed. - What is that like to know? - It sucks so like, that's why I always have to put 100% because I don't know what
my next downfall would be. And before we end the video,
do you wanna stand me up? So you're part of the video. - What do you mean stand you up? - Like put me up at feet. (clears nose) - Do you tell me about that? Do you do that throughout the day? - Yeah, I just do it for exercises, so I don't like atrophy - Alright, what am I doing? - Alright now take the cane away put it on bed or something (metal clangs) So we're recording, right? - Yes we are. - Alright so put your legs over my legs. kind of like you're giving birth to me - Like this? - Alright so give me your hands and then on three you're gonna pull me don't put your pressure on my legs. It just, and then on three you're gonna pull me up, so I'm standing up. - okay - But don't take it tight on it - So I'm just gonna hold
you up with my hands - You're gonna hold me up and
then I'll gonna be standing on face to face with you. - Okay, ready? - Okay ready, one, two three you gotta keep, take a step back. Okay. - You're good? - Relax, your hands. - What is the name of your disability? - Oh yeah, I didn't even
answer that question. Yeah my disability called FOP fibrodysplasia ossificans progressiva but yeah, my muscle turn into bones so my body will get
the thing called flares and it's basically a swelling
and bone just starts to form It can take a month two years and some of it a little painful but I go with my life, the one in the hips and thighs. It puts you into bed for
a long time which is years and its extremely painful. And it's like, it is hell on earth. Like it's on the 10 scale
with the 12 of pain. And at the time I didn't
have a pain doctor So I was going through it without any pain medications at all. - And this helps your legs - I'm yeah, but go the other way cause I can only do it clockwise - I'm going this way. - Yeah. - Okay. - I mean were stuck in this
room just because of oh yeah. and this is it. - How often do you do this? - Just twice day. - When did you first start
to experience symptoms? - It started when I was born, but obviously I don't remember that. Yeah my parents saw a big bump on my head. You know, everyone thought it was cancer so they removed it. And in my case surgery is a big no, I can't get surgery because my repair mechanism is wrong so you get surgery you remove the bone or more bones will grow. And usually they grow even worse so it's like, now doctor
really can't do anything because you're just gonna
get into a worse place So they have to watch you and then you have to watch yourself. It become the monster of a person. - Who typically helps you with this. - My parents or anyone who's comfortable take me back to the chair. So you gotta go sideways
so go in front of me. So on three l'll go into this the chair - Okay. - One, two, three - Okay. - You good? - Yep. - Do you want me to put your shoe back on? - Just put it close to me
and they'll put it back. People will agree with me and people won't and at this point I
just don't care anymore. Like, this is my opinion. The only thing I don't like
about myself is my disability. And I think that's fair. Like that's the only thing
I would change about myself. And it has robbed me a lot
of my opportunities in life. And I don't think I'll ever fully be happy with my disability. - So you don't accept yourself, - Ummm - Your disability you don't accept. - I mean, I accept my disability as it is, no, I accept my disability I just don't like it. - Tell me about why don't you like it? - Well, it robs me on
kind of my life really I have to do a lot of things differently or
I have to rely on people. I'm wanna be an
independent person at heart I can't do that because of my disability to do anything. - Do you have a lot of animosity about it? - I don't have animosity,
but it's more of a longing for because i used to be
able to do everything. And then you know, and you try
to keep that same lifestyle but then your lifestyle
is changing constantly so now you do things a
little differently, but now sometimes you can't do
things at all anymore. So now you just don't do it. So I can't walk anymore. Can't move my elbows anymore. Can't move my neck much anymore. Can't really move anything. Just my eyes are not affected because it's not a smooth muscle so I can move that, but I
can't move my neck down, so I have to have my eyes looking down. - Are your bones growing
or are there new bones? - New bones are growing. So, what happened in the flare is that a flare so basically
like, so when you fall and you hurt your elbow, you know when you get the swelling - Ehmm and then they always say, take ibuprofen that gets the swelling down and your body repairing
itself with muscle. And my case bones are growing. So the body's going, Hey, we gotta repair this
with X amount of bone. And then the bone grows. The flare goes away. That's it? the bone stays. But in my case more bones
are growing other places. So like in my case right now bones are growing in my
ribs for some reason. - And it's always somewhere else - Its not a lot of people will have flares for 10 years straight where bones are growing
across the whole body. There maybe there are bones
growing in my body that have no idea about. So like they're growing within my chest. They're growing within my stomach. They're growing in my back. And I have no idea about it. So if you look in the x-ray of my body It's a web of bones everywhere. My mental health has been shattered. like completely shattered. And I had to put myself back
together and realize what my importance in life is and what do I need to do to be better Like at the end of the day is all about me and I have to be the one
that put myself together and no one else can help me. No doctor in the world can help me So I just sat there alone
in bed, just being mentally shattered, having emotional
breakdowns every single day have a brave face when my
parent came in, like thankful for it, but then just
could be completely alone and shattered and didn't know what to do. I knew nothing I could do I just wait. - During those moments what can people do to make
you feel better emotionally? - There's really nothing they can do. I mean, I guess the biggest thing is not leaving the situation or just being there, but in terms of emotional or mental, it's really down to you cause every mental health journey always is all sollo travel. Yeah there will be people around you that helps to support you. And it really helps. But at the end of the day,
you have to accept yourself for however you are at that point and that you have to like
accept that serious situation and just you have to like
accept that's your situation and just have to be happy with it. - I'm sitting here thinking
about everything you've said how you don't believe
anything happens when we die how you don't have hope
for any type of recovery or cure and how you don't
expect the live long and how your condition's just progressing. What is it like for all
that to be your reality? - I mean, my reality is I
like to live in reality. I don't like to live on hope. I don't like to live on, you know like faith that some people do that something that is gonna
happen because you know like I'm manifesting in that it doesn't exist or
karma or anything like you know, like I think, it's all about luck and hard work
at the end of the day. Like, just because I went to through
traumatic time doesn't mean I deserve happiness
forever after that, you know there's people that win and lose in life and you know there's some that win and
there's people that lose and I guess I'm one of
the losing ones, you know.
