- 8 hours ago
One Day In My Body Season 1 Episode 8
Category
🎥
Short filmTranscript
00:00It's fine so I use my hands as my feet
00:04This is you how am I supposed to put that on it's a Christmas stocking
00:08I'll be right back, okay?
00:21Hey, be good girl
00:24My name is P Emmanuel. I am 34 years old. She know what let's do this
00:30I have a condition called caudal regression syndrome and that means I was born with a shortened spine
00:38So basically a lower waist that's little and the upper waist is normal size
00:54I use my hands as my feet
00:58When I have a long shirt on and when it's just dangling it looks like i'm flying
01:05But it's all right. I make it look good
01:10When I walk my hands are carrying all my body weight i'm about 86 pounds
01:17My shoulders hurt every day i'm in pain every single day even just sitting now i'm in pain
01:24I'm in pain
01:25Okay
01:28Oh i'm back
01:32Get some food
01:42Get some food
01:45Going outside and doing things like groceries and everyday things
01:50And has its difficulties
01:51I have fallen off this camera before
01:57Now it's too audacious
02:00I tend to adapt to a lot of things
02:03I mean
02:04We've got to
02:07I have to use chairs
02:09Ladders step stools
02:11Or sometimes I have to
02:13Try to reach that reach the end of the counter
02:16And pull my whole body out
02:22Doctors are trying to get me a health aid
02:24But i'm like
02:25No i can still do things on my own
02:28Not yet
02:28You're not gonna do that to me
02:30Not yet
02:37I'm developing arthritis a lot more
02:39It's something that can't be cured
02:42But i'm not gonna let it stop me from living my life
02:45We're gonna this pain is gonna have to go with me
02:54Yeah i'm excited
02:58Oh my god
03:00How are you
03:04Hi
03:05Hi
03:06I miss you
03:07I miss you
03:08I first met pia in california
03:12She was living with me for a while and then i had to move and i couldn't take her with
03:18me because
03:19There was no room where i had to move to
03:22So she's moved to illinois and i missed her
03:25You know because we did everything together we had fun together we went to places together
03:29i know facetime and talking on the phone is
03:33Good but it's not it's not the same as seeing them in person
03:37I went through a huge panic attack before you came
03:39Oh it was terrible
03:41I was overwhelmed and everything
03:48You're very overwhelmed i know because when will you're talking
03:52I could tell
03:54That's okay now i'm here
03:57She has been with me through my bad days my good days
04:02She knows the real me on the inside
04:06She's been through a lot and um it wasn't easy for
04:10Being who she was she's strong person because she stayed true to herself
04:16Growing up everyone always knew i was different not just a disability but
04:20They all thought i was going to be a gay man
04:22Hell no no way i wanted to be a woman
04:26I started taking hormones when i was 17
04:30But it's always been my dream to finish my transition
04:34The next step for me is to have full gender reaffirming surgery starting with my breast
04:41But as far as i know i'm the first person with clodoregressive syndrome to have this surgery and i'm not
04:47sure this is possible
04:49I didn't know what procedure that can be done
05:01My name is joseph the mayor i'm 27 years old and i'm from new jersey
05:07And my name is jessica and i am joe's wife
05:23I just start my days off with my medication i take about 10 to 12 pills a day
05:30Because if i didn't take that medication my body would fight off the transplant and
05:35The chance that would be checked and then die later on
05:50So yeah i'm in pain now
05:52See i run like about like five or six pain five or six out of ten
06:01It does prevent me from doing a lot of things
06:05What do you want to do?
06:06Do you have anything?
06:07I do like all the prep
06:09There's certain foods that he can't have because of the medications that he's on
06:13And also just the risk of getting sick from a bad food is high for joe
06:27Nothing raw it's a no raw cc
06:30So i can't eat eel which i never did i know
06:34I worked as a transplant nurse joe and i first started messaging around like april 2021
06:42We met on instagram
06:45i had added joe
06:48After learning about his story his car accident his transplant
06:53And then he messaged me saying i like your dog
06:57Joe and i just started talking about joe's boston terrier
07:01And then it progressed and i thought joe was a nice sweet interesting guy
07:08We couldn't stop talking
07:11Three weeks after that phone call i drove out to see joe and joe walks out and i'm like well
07:18he
07:19You know he's so quiet and so tall and so confident so that like stood out to me it felt
07:24natural
07:27Like like she also met me with stitches in my head and my forearms that was like interesting how that
07:32didn't bother because like
07:33Like at any point it could start oozing
07:36And like i find that gross she didn't care
07:41He was very open about his story and his feelings and what he had gone through and
07:48I liked everything about him
07:51She has nice eyes she has a good figure and says he's a really good figure compared to mine
07:56So like i think that gets a lot of looks out in public
07:59Like why is she with him and people probably say he probably has a lot of money or he's really
08:04funny
08:06So i guess i'm really funny
08:09Before the accident i was a happy-go-lucky guy
08:12He was very energetic so sweet just always there by my side and helping me with anything i need help
08:18with
08:19Just like he is today
08:22He was a really good-looking guy
08:26I'm a car guy
08:29Like the love of cars started at a young age i modified my car
08:35But i just turned 20 so like that day of an accident it was typical day for me
08:47i went home went to bed for like five hours went to child testing food products
08:53did my whole shift then when i was driving back home
08:59i fell asleep at the wheel
09:06And my car like blew up in flames
09:16I didn't know the severity of my injuries
09:24I have neurofibromatosis
09:28I worry about what else is going to happen
09:31You can tell me where i'm feeling these any of this painful
09:53But i think you would like the handstands better
10:01I'm Reggie Bill
10:04I am 61 years old
10:09I have neurofibromatosis
10:26My vision is not that good anymore
10:31And the other problem is my leg
10:35It's hard to walk because of the heaviness of it
10:53I have two sisters that have neurofibromatosis
11:01Reggie's kind of like the boss
11:03but i'm the oldest yeah
11:05You know she's always looking out for me and everything like that
11:10I have some of the tumors that's all over my body but not as many as Reggie has
11:15Each time i got pregnant i developed more and more and more
11:22I had one brother had it but his didn't show up like mine
11:29He had a few tumors he didn't start having problems until the doctors saw it
11:39He said he had cancer
11:49It just started spreading through his body
11:53We just couldn't do anything about it
12:11I'm sitting in that chair right
12:13Hello Reggie
12:15How are you buddy?
12:19Good to see you
12:21So i'm on the neurofibromatosis program here at MD Anderson Cancer Center
12:26I've been here about 30 years with this program
12:30A lot of our patients we've known for years and years kind of like the bibbs family
12:34We knew them as kids and pediatrics and now we see them over here as adults
12:40We were talking about your brother who passed away from the malignant tumor
12:46Now for years we've been following this leg because we've always wanted to make sure you don't all also develop
12:52a malignant tumor
12:53Now I can feel and hear the neurofibromas
12:56Oh yeah
12:57Reggie is by far among the most challenging patients i've taken care of
13:02He has progressed he's less mobile than he used to be
13:15Come here give me another hug
13:28I know that she's struggling a little mentally and physically
13:42Okay let me sit down you want to take a break
14:00You're doing fine pia don't worry you want to see what i brought you yeah
14:06This is the thing about you today though
14:09This is you
14:11Girl how in the hell am i supposed to put that on it's a christmas stocking oh
14:17She cracks me up
14:19She's been through a lot
14:21She is resilient i don't say that about her
14:24Yeah i want you to put that on remember you were into mermaids at one point
14:28You love mermaids oh my god it's a christmas stocking you silly
14:33This is cute this is really cute you like high heels remember i do
14:37Do you have any high heels because i know you still like walking in your high heels
14:40I do
14:41Can you actually wear them on your hands are there i'll do it just once but that's it
14:46Okay
14:47I started transitioning at 17 wearing girls clothes
14:53I used to wear heels on my hands i mean we're talking six inch heels not no little heel like
15:00Three inches we're talking six i like to be tall
15:03As tall as i can be
15:07Let's see it let's see it here she comes miss america okay
15:13Look it you can do it look at that strut your stuff
15:15Look at me go
15:17Yeah, look at that
15:19And i know you have a shoe thing you love shoes so
15:26That's awesome
15:27What did andrew think of that?
15:28I always hated him
15:30He always thought i was gonna get dressed up and go out
15:34So i met my husband andrew when i was in my 20s
15:41He was rugged and he had this bad boy vibe and that attracted me so bad
15:48Say hey
15:50Yeah
15:51He was a straight man having experience with a trans woman and for 13 years
15:57And there were times where i forgot that i was even trans because he loved me so fully
16:04But he suffered with multiple scoliosis and he had troubles with walking
16:17I'm in the hallway i see a bunch of people nurses doctors pumping his chest and i'm just praying
16:25He passed away with pulmonary embolism
16:29He had blood clots in his lungs
16:33There's just no words for that 38 to be passed to pass away from that
16:38But i felt bad for pia because she was here by herself
16:42She was basically all on
16:45It was my whole world
16:48Everything started hitting me where
16:51I curled up literally on the floor crying
16:55My whole soul just left my body i'm like
16:58Now what the hell am i gonna do without you
17:07As a transgender woman i'm not a fantasy i'm not a fetish i blast it out there i'm comfortable in
17:13my own damn skin
17:16I used to be so insecure when i first started transitioning but now i'm just like you know what
17:21It's beautiful of who i am and i love that and i'm proud
17:30So what are we doing tomorrow we're going to the hospital to talk about breast surgery
17:35Oh okay well that's a big thing i'm excited yeah yeah
17:40I'm glad that you're blossoming out
17:43And doing this because this has been your dream your whole dream i know that
17:48Let's pause a minute i'm getting very very very overwhelmed okay
17:55Doctors came in telling all of the 80 for seven burns you're not going to look like how you used
18:00to look
18:00My fingertips were amputated off my eyelids were burnt off
18:04My plastic surgeon told me they are looking for a candidate for a face and double hand transplant
18:09There's a 50 50 chance he'll live
18:24My car veered off to the side of the road hit a curve and it flipped a couple of times
18:32A good samaritan stopped and pulled me out
18:44And then i woke up three and a half months later from the coma
18:51I didn't know the severity of my injuries my mom was there
18:56The first question i asked when i woke up was how was my car
19:00She said yo your car is ruined and like at that moment i was like oh that that sucks
19:07The doctors came in and they gave me the whole rundown you're 80 for some burners you're not going to
19:13look like how you used to look
19:21My fingertips were amputated off and my lips were burned
19:26One of my earlows were burnt off so like half my ear is gone
19:32My eyelids were burnt off so they had to make like suture lines in between my eyelids
19:36So it was looking at a chain link fence
19:39I lost my 20 20 vision
19:41I could still see but not text
19:45And then when they were transferring me i got to the rehab side
19:49That's when like they took me off every medication
19:55And i tried doing something on my own and i was like oh where are my fingers
20:00I can't stand up on my own and i was like oh that was a gut punch i got upset
20:06Around my achilles were burned too so like i had to relearn to walk again
20:11So it's like kind of like a battle to walk again
20:18After the rehab i had to move back into my parents house
20:22Just like the small little things everyone does every day like brushing your hair brushing your teeth pouring cereals getting
20:28a glass of coffee
20:30Just i couldn't do that my mom had to do it for me anything i i needed i'd have to
20:35ask her
20:37My plastic surgeon told me like i basically can't do nothing more for you you got no more healthy skin
20:45But they are looking for a candidate for a face and double hand transplant
20:54Dr. Rodriguez evaluated me
20:57Said like okay
20:58Do you want to do this i was like yeah he's and he told me like if this works you
21:03would be the first
21:04Successful faces on hand transplant
21:06This is joe to my right he's the patient that we're going to be listing
21:10He sustained about 80 percent total body surface area burns most people that amount of burns they don't survive and
21:17that
21:18Has severely compromised his life
21:23When they first told us that they can give joe a face and double hand transplant
21:28Just blew our minds just so we didn't know that can they can do stuff like that
21:34Every time we saw the doctor he would always say hello everybody just to let you know you can die
21:39during the procedure
21:41Okay, thank you. We understand this, but you know, I don't want to hear it every time
21:48Then he goes to me he's like do you have any questions and then what about will he live
21:53There have only been two attempts in the world to do a face
21:56And bilateral hand transplants and they have been unsuccessful first person
22:02Died on the table and then the second person
22:05The hands failed you're like well. There's a 50 50 chance he'll live
22:18Oh, yeah, they're all waking up look at them come on breakfast now
22:23So the next step for me is to get breast augmentation
22:27That's like the first surgery that I want to happen for me and I have to go to my consultation
22:32and see what happens
22:36The purpose of the consultation basically is I'm going in fresh so they don't know about my disability or nothing
22:42So I don't know what they're gonna say about that, but I know it's gonna be just measuring sizes proportion
22:49What my body frame can take the sizing that I want is I want to go big that's a mess
22:54for me
22:55Because my proportion I'm not saying I'm gonna be the mini version of Jessica rabbit or anything
23:00But I mean I could pull some red hair. Let me tell you that I've done it in my past.
23:04I want to go large
23:08Girl you go freeze
23:13Go ahead it's good to see you
23:17You can just move those blankets you can set them on pia's chair
23:32I work with my patients to find out what kinds of resources they are needing to access
23:41We need very accessible transportation. I'm having anxiety right now really bad
23:47Do you want to stop?
23:49Whatever helps. I mean, I just feel like my throat is locking up and I'm just uncomfortable
23:54It happens to all of us, honey. It's called anxiety. You're okay. All right. Hang in there for me. Just
23:59a second
24:00I need to breathe for a second out. I need to breathe the air. Oh, yeah, you got that really
24:05close again
24:07I am so sorry. Hey, okay. No sorries and no thank yous. I know let's get you out here for
24:12a minute
24:17I can't do it. Hey, come on
24:20Because I've been doing this like documentary is my fan base like they always want perfection. It's like
24:26Sometimes I don't want to be like that. I am struggling and they want perfection or do they want real?
24:30Right. Tears are a real thing. Anxiety is a real thing. You haven't been out on a very long time
24:38Okay, come on
24:46That helped a ton i'm so glad i'm really that air that's what it is i'm being i'm closed space
24:55Yeah, I haven't been out for a while
24:57It's good to take a break. You need a breather sometimes. Yeah, that's all right. You want me to put
25:01my oxygen on you?
25:03No, I don't need your oxygen. Are you sure?
25:09Hi guys, so I just arrived at my consultation just right at the hospital so let's see how this goes
25:18Accessing health care as a gender diverse person is becoming more and more and more challenging
25:23For pia will probably have to do some very inventive thinking when it comes to accessing things like surgery
25:27But we also want her to be able to access care specific to her disability
25:34So for pia just yeah everything has more steps to it more considerations more stuff to think around
25:48If the doctors tell me that top surgery is not going to happen for me i'm going to be really
25:52devastated
26:03You
26:03Cancer the clue is these malignant peripheral nerve sheath tumors become very very painful it's new pain
26:11It's localized and it's 24 7. It just hurts. You can tell me where i'm feeling these any of this
26:18painful
26:23No pain up in here. No, not okay. This is all i need to see
26:31As i get older i worry about
26:35What else is gonna happen and any infections in the skin no
26:43No pain here no all right you're good
26:52I think so you bang into it yeah squeeze it then it's gonna hurt but it's not cancer
27:01We always have great visits yeah we have too much fun yeah
27:09I'm just so so happy to have seen you and get caught up with my health situation
27:17It was good to have a nice chat thanks a lot see you later okay
27:25All right okay see you
27:34I'm gonna be ready to go i'm the assistant lisa's a sous chef
27:41Reggie's the chef
27:47Cheers to the family thank you all we had a great week
27:53I would close it out with cake we just live our lives the best way we can
28:01Delicious nice and warm and it's the best one that i have ever had
28:14I got the call in august of 2020
28:18Saying i'd show you got a donor and it's all ready for you
28:22Come in to the house as soon as you can
28:34Yes it did scare me of course i don't want to lose him
28:38You know i almost lost him the first time
28:41See you later
28:50The first person died on the table and then the second person their hands failed
28:56That didn't bother me i had a lot of trust in my doctor
29:01I was like whatever if i go i go you know it was my choice at the end of the
29:06day
29:31I was super grateful that the transplant
29:35All right because i got another chance at life again
29:49So joe you know what we're doing today we're going to kind of liberate you so we can
29:53Let you look in the mirror i'm turning it towards you you're starting to see
29:58You have a big smile
30:00See that see everything's starting to move
30:02Isn't that great open your mouth real wide
30:04Good close your teeth
30:14When i first met joe i had been working with this co-worker and she was like well
30:20Why would you do that to yourself because we were working on a transplant unit?
30:23She was like you see what happens like you see what they go through
30:27And at that moment i was like you know maybe she's right
30:30There was a moment where you think like hey my life is going to change because i'm with someone
30:35Whose life is so uncertain but that never once made me step back or anything from joe
30:43We got married
30:45Yeah, we got married in hawaii
30:47I feel pretty lucky signing my wife so the day of our wedding we had to be mindful of the
30:53sun
30:53So we knew that we couldn't have something
30:56In the afternoon it had to be more towards sunset
30:59I'm immune compromised
31:00I can't be in the sun because i can't get sunburned
31:04If i get sunburned i get emitted
31:07He's going to always be immunocompromised
31:09When you get a transplant no matter what no matter how perfect the match was
31:13You're going to be at a risk for rejection
31:23Joe goes to appointments once a month for his immunosuppressants
31:28But if he doesn't do that he could die
31:31It would be a good time now to start a family since you're not getting admitted like you were before
31:38Yeah i could die tomorrow
31:39But like does that scare you
31:54When you lay down you have pressure in your lower back so you can simply lay like that
32:00Joe knows his body he knows when he's going through rejection he gets pain
32:04Uh you could see it his face gets more red he knows he needs to go in
32:13Today is april 1st so i got admitted to hospital all the day because i had pretty bad hand pain
32:19They saw how red my hands were and how red my face was at the time
32:23And i got like super much swollen my hands puffed up it was just a mess
32:28Well, it's just a typical thing with hand transplants or just transplants in general
32:33Uh, just rejections
32:35I was released from the hospital
32:38Usually after i get released from the hospital
32:39I tend to just chill out at home and try to recuperate uh no rejections so that's pretty good
32:48Hey guys
32:49Hey, how are you?
32:51Good to see you
32:52When i first met jessica in the backyard i was just like whoa she's beautiful
32:58Here's some cherry pie
33:00Thank you
33:01They're always happy they always seem happy to me
33:04What more a mom can want so very proud of him i'm very excited just to hear you guys even
33:10talk about having kids in the future
33:12Hopefully the near future joe and i want to start a family uh we are ready as ready as we
33:18can be
33:19i'm not pressuring you at all but um i'm sure you'll know how i would be with them
33:25Oh my god you have twins i said them um
33:31Go get the ball go get the ball go get it
33:35Is there urgency in having children i would say yes
33:40I'm 35 and wanna don't wanna be too old having children like it to happen
34:04So it's not a matter of
34:06If we have a kid it's just a matter of when right like we have a room that's ready i
34:11mean
34:11Not ready but we have an empty room kind of there's always nine months to plan out
34:17I would want at least two i think that a lot of our reservation to start a family
34:23Was just like you getting admitted because you were getting admitted like every three months it would be
34:28A good time now to start a family since you're not getting
34:32Admitted like you were before what did they tell you when you got your transplant oh how long you could
34:38live
34:39They didn't tell me a life expectancy like did they say 10 years though like
34:43Oh no they ain't getting any numbers because they said i could die on the table
34:47So like you know that like the average life expectancy for someone that gets like a heart transplant is like
34:52five to ten years
34:53Oh
34:54Right like that's what i'm talking about so like you know these numbers
34:57I guess i got five more years left i don't know what i mean
35:00Yeah i could die tomorrow but like does that scare you
35:05I don't know i think
35:06But like having a kid like would that
35:09No because like at the end of the day after going through my experience of a car crash
35:16Already being on my death table once
35:19Death isn't really in my eyes anymore because
35:22I don't sound cocky but
35:24I am going against odds in a way
35:26Because everything the doctor says will happen or could happen hasn't happened
35:31If my hands fail so you're not scared no but if my hands fail
35:36I'm not scared because they can replace it with robot arms
35:39What about your face a carbon fiber arm if the face i think i'm dead
35:44Uh my doctor said i'll look worse off than i did burned
35:49If the face failed now i think i'll be dead i don't know
35:53Like for like the one good thing having a kid is
35:57It'll have my original face not this face though i'll have the i'll have the sharp drum line so
36:04Girl or guy
36:07Yeah with all the treatment i was talking with my doctor i think it's like a good time to
36:13Start thinking as a kid
36:15I like accomplishing like little goals in like my life
36:21It made me appreciate like life again like
36:24This is my second chance like you really don't mess it up all right let's go
36:30I'm excited
36:32If anything happens it's thrown at us
36:35We're ready for it
36:52Yes, you like toys
36:55Come on guys
36:57During your consultation what were the risks of a surgery that the doctor told you about
37:02It was mainly because i didn't have so much skin
37:06It's tighter because i walk and i'm consistently working my chest muscles and
37:12It would be not enough to close and it wouldn't look like the results that i wanted which sucks
37:18But i'm still hoping for a possibility and we'll see what happens
37:23He possibly could deny it if it's too much
37:28Oh hot oh my god almost fell
37:33Got a lot of steps
37:36This is going to be my first outing in a minute
37:38Justin how's that feel honestly it feels really good i'm pushing myself to go because
37:45My past self used to love going shopping and everything
37:50Oh these are cute
37:53So i envision
37:55So i envision when i have my surgeries is to be more neck cliches and
38:03It's gonna be we can you make me more confident
38:05Oh that's cute
38:08These are the cutest little shoes look at that
38:10I like my feet when i was little i used to wear little shoes like this
38:20Oh my god can you imagine a little bands on me
38:26I'm gonna get these ones
38:33Yeah that feels good instead of filling all the pavement getting all dirty
38:37It's cute oh that'll be nice
38:42Never too old for fairy tales
38:46You guys got a lot of nice beautiful things
38:48Oh thank you
38:53Like how do you feel when you put a nice dress on or how does that make you feel
38:57Feminine i feel great i feel beautiful
39:01I don't let the clothes wear me i wear the clothes you know
39:14I think they're gonna look amazing i mean
39:19I think they look great i think they look great yeah
39:23You want to know the size that i want yeah what size you want one second girl
39:29Give me a minute don't look okay
39:32The doctor basically said if i knew the risk of the the surgery like do i really understand what i'm
39:39gonna get
39:40Myself into and i'm like yeah you ready girl i'm ready let's see these come on come on take a
39:47load of these
39:52Actually they don't look too bad look look at that they actually look good
39:59Oh my
40:01Are those the d's huh there's a size d those are d
40:07Look at that cleavage wow
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