I’m Gemma and I am the senior
HR adviser and quality control coordinator here at the Digital
Accessibility center. I have multiple sclerosis. I have relapsing
remitting multiple sclerosis which is
an invisible illness. It’s not something
that you can see but it is equally
as debilitating as A condition that
is plainly visible. For example somebody
who is in a wheelchair or somebody who is blind it can
impact on your ability to walk. It can impact on your ability
to see, to comprehend. It can leave you so tired that
you’re unable to do anything but because externally you
look absolutely fine, it’s something that
is not often considered. In terms of the way
multiple sclerosis can affect people’s day
to day lives. For example getting online
and online you can sometimes suffer
with sensory overload if a website is very very busy
or it’s got a lot of detail or if it’s overly wordy. If you are having a relapse
or even a flare day sometimes it’s very difficult
to take that information in so sometimes you find
using these things to be a little bit too overwhelming
in terms of physical aspect. Sometimes it is too difficult
to manage buildings that have
stairs sometimes you can forget
where things are or you can trip because people have left things
in places or even because your body
has decided to stop working when there is no obstacle.
So in terms of the way that my condition can affect me. In ways that perhaps
people might not think. To take into account
it’s quite often because it is an invisible
illness on the outside. People will often say
but you look so well. The reality is,
and I’ve always said to them, if you turned me inside out. The truth of it would be
very different it would look very very
different. I do find that sometimes people
are perhaps a little bit over the top
in terms of the way that they interact with me and sometimes I’ve had cause
to complain that people maybe sometimes treat me
like I’m made of porcelain and the reality is I’m not. You know when I’m not having a
flare day my body mostly
functions and that’s fine.
When I’m having a flare day and my body isn’t functioning.
Often. I’ve had to say to people
it’s very kind of you to sort of speak on my behalf
or decide that something is not for me because I might
not be up to it. But the reality is, is
you don’t become invisible because you have
an invisible illness. You still have a voice
you still have an opinion and the way that you want
to things is, I find is often very much forgotten
because they assume that because you have this affliction that you are incapable
of making that decision. And the truth of it is even
though you have an invisible
illness you are still a visible person with very real thoughts
and feelings. And very real opinions and ideas
on how you want to do things and quite often we are
all very capable of saying when something is beyond
our capability. So whilst it’s lovely that
people sometimes feel the need to speak on your behalf. The reality is most of the time
it really isn’t necessary. So a Flair day, the definition
of a flare day can vary from person to person
so one person for example say my MS nurse, might call a
flare day an exacerbation of
symptoms where as my consultant
neurologist may call a flare day an actual relapse and they are two
very different things. A relapse is a new occurrence or symptoms
or a new episode of disability or disabling effects
whereas a flare day is regarded by my MS nurse is an exacerbation
of existing symptoms. So in my case it might be
that my leg becomes weak and I have to rely on a crutch
or that I lose the vision in my
left eye. The defining criteria
is that it actually comes back. So a relapse is something that
happens and stays and a flare
day is something that happens
but then it resolves. So if I’m having a flare day
you may well expect to not find me being able
to do very much all whereas conversely the next day I might
be fine. Best way to describe it really is a bit like
a frayed USB cable. One day it will
transmit the signal no problem the
next day not so much. So I guess the thing
with an invisible illness is people very often, like
with a visible illness, they don’t really know where
the boundary exists in terms of when you should offer help and when you should refrain
from offering help. I think. Really the litmus
is that actually you should, most people will tell you
if they need help and that that Bachan
sort of the gauge. I know that if I need help
I’m the first person say if I don’t say generally
speaking people who know me know not to offer help
because it won’t be. There’s a fine line between
being helpful and insulting. And that’s very honest
take on it, is not very popular but it is very honest. But then I’m the same
if I see somebody struggling, my immediate response
is to offer help. So I suppose from
a human perspective it’s hard coded into our DNA. So where it’s working out
where to gauge it I think the only way
you can really do that is if somebody has asked
for help you should give it, but otherwise wait to be asked.
When you battle a chronic illness, that lack of control is gonna be there, and it gets frustrating. -intro music- Jaquie: We’re going on an Adventure! Judd: Ah! You’ve got freezing cold hands! *they both laugh* Judd: Eew *they both laugh* -intro music continues- Good Tuesday morning, everyone. I had a rough night last night. For the first time in a long time, I had an angiodema attack. And, for those of y’all who are new, my angioedema attacks are where my body goes through sporadic and rapid swelling And we were laying in bed about to go to sleep and it started with the bright red rashes I get on my arms and my breathing became labored. My throats began to shut tighter and tighter so Judd got up, got my emergency medication kit, and put IV Benadryl through my port and that aborted the episode. But even after the medication helped me I still did not feel quite right and having to fall asleep making sure you have epi-pens within arms reach is just- it’s unsettling. It’s scary, it’s not a good feeling, but despite all that, I did make it through the night. No hospital trips, no epi-pens. God saw us through, and for that I’m really grateful. A few minutes prior to the start of the angiodema attack, Harlow was acting weird. She was pacing, she was staring at me dead on, and she was whining. Which is not typical behavior of her, but we couldn’t really tell what she was trying to say to us because Harlow doesn’t typically alert to my angiodema attacks. It’s not like when she alerts to my fainting episodes because with that she’s very deliberate, it’s very obvious what she’s saying. But last night, even though we couldn’t really tell what Harlow was trying to say to us, it was obvious that she knew something was wrong. But even though we didn’t understand her warning signs, we were still able to handle it. [Jaquie to Harlow]: And I’m proud of you for being so intuitive. As ya’ll may know, we don’t know my triggers for my angiodema attacks. My angiodema stems from my severe immuno-dysfunction. So we know that I have angiodema because my immune system is very dysfunctional, but we don’t know what triggers the attacks. Although we know some of my allergens. I go into more detail about that in the angiodema section of my Chronic Illness Video. If you wanna learn more about my angiodema, you can go to my hospital blog playlist. My angiodema put me in the hospital a lot this year, especially pretty much all the month of January. So you can learn more there. I know several of y’all have been wondering what happened to the angiodema attacks. Well it’s not that they’ve disappeared. As of right now there is no cure for angiodema and it’s something I’ll most likely have for the rest of my life. My doctor speculates that perhaps in the beginning of the year when I was having them very often, that I was in a flare and it’s dissipated. But, there’s really no way to know for sure. Chronic illness is very unpredictable and there’s no way for us to really know how the attacks are going to present themselves in the future. I could have zero attacks today and I could have upwards of five or more tomorrow. There’s no way to know for sure. And that’s why I really try to take everything one day, even one hour at a time. Because chronic illness is so unpredictable. I just want to make the most of whatever moment I’m in. And that’s why we’re always ready for the attacks too. That’s why we always leave my port accessed and we have IV Benadryl ready to go in my emergency medication kit. Because the attacks come on so quickly and progress so quickly we have to be ready and act fast. We always have epi-pens ready to go in case IV Benadryl doesn’t work. And we’re just always ready to handle my chronic illnesses as best as we can and to do all that we can to keep moving forward in this crazy life with all these chronic illnesses. Today I am feeling exhausted. Having an angiodema attack takes a lot out of me. Emotionally one because when your throat starts to close your body goes into this panic mode. You can’t help it, at least I can’t. So just that sensation of impending doom and panic is enough to wear me out. And then the physical toll it takes on me too is a lot so I am worn out. I am not feeling well from that. And in addition to the attack, I also subluxed my left hip last night, which is a symptom of my Ehlers-Danlos Syndrome. Subluxing is partially dislocating. My joints are very hypermobile from my EDS. So, today I’m not doing great. I’m dealing with pain, extreme fatigue, I’m exhausted, I’m just- I’m not doing well. *sighs* Today is a mandatory rest day and I’m going to be okay with that because this is my reality with chronic illness, and I’m going to give my body what it needs. I just woke up from taking a nap on the couch and *sighs* it’s just one of those days where no matter how much I rest, I feel like I’m never gonna get my energy back. It’s this relentless fatigue, and drained, exhausted feeling, but I’m doing the best I can and I’m listening to my body. I’m giving it what it needs. I just- I know eventually things will turn around. It’s just right now at this moment it can be a little frustrating. Having Harlow here always helps. She’s so sweet. Not only does Harlow help me with physical limitation s and has various tasks to help mitigate my disabilities, but just having her unconditional love and support is a huge help on days like today and every day honestly. You’re a good girl. I’ve taken another nap, done my usual stuff, taken pills, flushed my feeding tube, put more nutrition in the feeding bag, just relaxing. I know some people may think it’s nice to lay around the house all day and relax, and that is nice, a lot of people enjoy doing that every now and then, But the difference between what I have to do today and just taking a day to relax is that I don’t have a choice. Because of my chronic illnesses, because I went through an angiodema attack, which is extremely hard on my body, there is nothing else I can do today, except rest. And it’s that lack of options, that lack of control that makes chronic illness so frustrating at times. There are so many things I would rather do than take all these rest days- I have to because my body is constantly fighting against me. Instead of resting and allowing my body to recuperate from my chronic illnesses, I would rather be going to college full time. I’d rather be out working or just doing something else, but I can’t and my chronic illnesses are so unpredictable, we never know when I’m gonna need a full rest day. We never know when I’m gonna end up in the hospital. We don’t know all these things and it can be really frustrating. The lack of control can be so discouraging. Today is a hard day. Last night was hard too and it is just- it’s difficult. Um, but on days like today, I don’t push the frustration away. If I need to be frustrated, I let myself be frustrated. But I know tomorrow is a new day. I’m doing exactly what I need to do to recover and I’ll do what I can to keep moving forward. I’m just here in the kitchen. I’ve got my feeding tube stuff out. I am about to do another flush of water through my feeding tube to keep it working. Ugh I mustered up all the energy I could to make myself some Velveta mac and cheese and then I went to take a bite and my body was like, “Nope, Mmm, not having it” I got extremely nauseous which is kind of unusual for me because when I wake up and I’m having an okay GI day, meaning I wake up without severe nausea and vomiting, I can usually tolerate Velveta pretty well But I guess today is not one of those days. Chronic illnesses change from hour to hour, day to day. So anyways, not having the mac and cheese I made. I’m gonna try some dry cereal. And I should be able to tolerate that better but first I’m gonna flush my tube with some water. So I managed a few bites of cereal and that’s probably all I’m gonna eat today. I don’t wanna risk eating too much and giving myself the symptoms of stomach pain, nausea, and vomiting. Instead I can rely on my handy feeding tube to give me the nutrition I need. And I’m really thankful for tools like my feeding tube that help me stay functioning and give me the best quality of life possible despite my chronic illnesses. And even on days like today that are really difficult, I’m still thankful for things. Thankful for tools that help me function, thankful for my service pup. *kiss noise* I’m thankful for supportive people in my life like Judd. I’m thankful for y’all who continuously offer kind words, encouragement, and support, and let me know that sharing my story is making a difference. Harlow, “sit”. “Lay down”. You’re-you’re taking up a lot of room. I’m- I’m trying to talk to the people now.(laughs) Yes but you’re very cute. *kiss noise* So, I am thankful for things, but days like today still come, and they are frustrating because like I said when you battle a chronic illness, that lack of control is gonna be there and it gets frustrating. I have no control over when an angiodema attack will happen, when my POTS is gonna flare, when I’m gonna be feeling good, or when I’m gonna be feeling bad. It’s always a gamble at how my body is gonna be functioning when I wake up in the morning and from hour to hour. It can change so much because chronic illness is so unpredictable, but I just do the best I can within my circumstances. I do what I can to keep moving forward, and days like today, I give my body what it needs, and I rest to let it recuperate. But, The frustration will be there and that’s okay. That’s part of life with chronic illness, but I do my best to focus on the positives and keep moving forward. Judd is working today. His twelve hour shift ends at ten p.m. Tomorrow he’s off and Thursday he’s off. Thursday we have a follow up appointment with my GI doctor for my feeding tube. And tomorrow we’ve decided that he and I will try a new place for lunch. I like to set up things that don’t take too much energy for me, but it’s something to look forward to after hard days like today to kind of lifts my spirits, so that’s why we set up this lunch. And, hopefully I feel well enough to do so. I just, like I said, I’m gonna take it easy. I’m not gonna put myself down too much because my chronic illnesses already do that enough. I mean, it’s not my fault that I’m not feeling well, and I have to acknowledge that and know that the unpredictability and lack of control is just part of chronic illness. And with that, I will say Goodnight. I’m going to bed early again and I will say thank you so much for walking this journey with us and for joining me on my adventure. *outro music*
hey guys so today I thought I would do
another update hopefully this one doesn’t look like it’s filmed on a
potato like last times was because that was pretty horrific and I apologize
for that I’m filming on my actual camera this time
not my phone because it just looked horrible
but yeah so just went to another appointment as I said in my last video I
was gonna try and book a GP appointment just to kind of get the ball rolling on
some other things now that the kind of like cardiologist side of it is kind of
like underway there’s nothing else I can really do on that side of it so I went in
today and I was asking about mainly my sickness because my nausea has been
so bad it’s like stopping me from going out doing stuff so she did actually
prescribe me some meds to take I can’t take them all the time because they can
interfere with my PoTs which is great so I have to kind of like save them for
bigger days when I’m like going on a full day out and stuff like that so I’m
going to try and test them out and see how they go because I have a big plan
big day planned a couple of days from now we’re going to the Harry Potter studios
and I’ve never been before and it is for both of my best friend’s birthdays so
we’re all kind of going it’s going to be fun and I don’t want to like sit and feel sick
the whole time so I’m going to try them out then I’m probably gonna try them out
tomorrow just to make sure that I don’t get any like wild side effects from it
so I’m not like dying on the day but if they end up being great then I will use
them as and when I kind of need them on bigger days out and stuff I know I’m
going to walking around a lot so that was a positive hopefully those end up
working out well and then I was talking kind about the mobility side of it
because I have had to start using wheelchairs and things when I go into
supermarkets mainly because again it gets to that like 10 15 minutes and then
I start to feel like ridiculously sick to the point where I need to either like
sit down lay down whatever so we’ve been using wheelchairs which is very easily
accessible in most modern supermarkets and they’re free and easy to find and
I’m quite happy to be wheeled around it feels weird because I’ve never been in a wheelchair before quite happy I had a great shopping trip
my mama had a quick shopping trip shouldn’t we’re having difficulty
pushing me about or anything it’s just weird to be so low down
perspective wise other than that I’m quite happy and asking if I could
potentially have any other illnesses as my cardiologist asked if I had
Fibromyalgia or if I had ME or if I had Chronic Fatigue Syndrome or Ehlers-Danlos kind of difficult to say – I have joint pain and stuff so I have been referred to a
rheumatoid specialist that’s another thing I have to wait for and in the
meantime I get to do another blood test so I’m like 80% sure I’ll probably faint
again but I’m going to be laying down this time I’m going to make sure that I
lay down and that might change a lot of stuff with obviously PoTs I’m at my best
when I’m lying down so if that changes things and actually make it through it
without fainting then that’s that’s grand so if anyone else has a phobia of
like having their blood taken please do let me know I obviously dealt with it
last time it was mildly traumatic but I did it and it helped but I just find it
kind of difficult and I know asking for advice is kind of pointless because by
the time this goes up I would have had my blood test like months ago but um but
yes I have to have another one of those so I can have some more specialist tests
done for the rheumatoid referral so basically all I’m waiting on now is my
heart echo, testing out these new meds and then I’ll see how that goes so next
update I have no idea what that’s gonna be like I probably won’t be for a while
probably won’t be until after Christmas now depending on when I get booked in
for all my things because I’ve got to book in for my blood test obviously and
that will lead to my rheumatoid referral and then I’ve got to get my echo sorted out I
also got my letter for the first ever cervical screening so that’s another
thing I need to book in for obviously not as bad as most you know
these blood tests and things I’d probably rather have a cervical screening than
have a blood test and some people might think thats weird but in my case I’d rather
people be looking at my lady bits than be sticking a needle in my arm so
there’s that I’m not sure how anyone else feels about that I thought I’ve
mentioned what medication they put me onto just in case anyone’s interested
*tries to pronounce medication and fails* I’m trying but it is this one here which
obviously I can only use sparingly I guess she gave me just a box just to
try out, it’s used for a lot of other things too which is kind of interesting
used for anxiety sometimes used for mental illness used for lots of other
stuff so that’ll be interesting to see if that affects any like brain mood
things because obviously it’s kind of just stopping the sickness feeling and
dizziness feeling which I get every single day so um so yeah we’ll see how that – we’ll
see how it goes but that was the name of it I cannot pronounce it to save my life
and we’ll see how that goes and if I have a bad reaction or I have a good
reaction maybe I will do a little update about that after I’ve taken it a few
times and see how it goes so yeah thank you guys for watching I hope you’ve
enjoyed my little update and I will see you guys soon
My cousins are coming to see me. You guys are all in the vlog Good Monday Morning Everyone. How are ya’ll doing? I am happy to say I am doing well. Asthma is giving me a little bit of an issue this morning. But I did not wake up puking from my gastroparesis so that’s a win. I want to share some news with ya’ ll. I finally figured out how to open community contributions to all my videos Meaning ya’ll can put in translations of my videos into other languages But the really cool part to me at least is that y’all can submit closed captioning which are subtitles for my videos To make them more accessible to the deaf and hard of hearing and that’s a big deal for me because my father is nearly completely deaf. And although youtube generates their own subtitles they’re not very accurate and I know several of ya’ll have already offered to submit closed captioning to my videos and so now you can! and that would be so awesome and there is a link in the description to take you to where you can start submitting closed captioning and so just let me know how that link works out I have never done this before so we are going to learn together how to make this work and the reason I don’t close caption my own videos is because that would just be asking too much of myself between the daily vlogs I edit and then the videos I am working on now and the training tutorials I want to work and then maintaining my health And then life’s general craziness that would just be adding too much to my list of things I need to do and I do not want to ask to much of myself so although I would love to I am really sorry I just can’t close caption my own videos but I know several of ya’ll have offered to do so as community contributions and now there’s a link in the description for it. so that would be awesome and I would love to make my videos more accessible so lets see if we can get this going. This pup and I are going to occupational therapy this morning. I go to occupational therapy for my autism and sensory processing disorder I haven’t been able to go the past two weeks due to my health getting in the way but I am finally able to go in this morning and its a re-evaluation to set future goals and see if iv’e reached the goals we set when i first started OT about 5 or 6 months ago. big yawn and I was gonna, thank you for that kiss! I was gonna stop at the neighborhood dog park to let Harlow run but unfortunately it’s extremely humid out this morning and that’s not good for my asthma and my asthma is already giving me more issues than usual this morning so I’m not going to push it. But Harlow and I are going to play tug in the house and some fetch in the house before we go. Come here. That was a crackly ball Whoa wipe out! Careful! come on hippo! so on days like today were I might be feeling to unwell to go outside or there is something preventing me from going out side like the humidity and I can’t adequately burn her energy at the dog park this is how I do it, we play fetch up and down the hall way, we play tug inside, I burn her mental energy which is a great way to burn your dogs overall energy by doing training drills or teaching her a new trick and that is perfect for burning Harlows energy, because she is a medium energy dog and this is how I handle her when my health prevents me from burning her energy outside running around the dog park. (growling) You’re so strong! (growling) (breathing heavily) (coughing) (inhaler noise) (more coughing) (inhaler) (more coughing) I had a mild asthma attack but I used my rescue inhaler and i’m totally OK. I have cough variant asthma so I dont really ever wheese I just cough for my attacks and as you could see Harlow stopped playing and became focused and a bit concerned I just, I love this dog shes so good, so any ways feeling a little drained from that, but I made it to OT so its time to go in. OT went really well, I met some goals and I still have some things to work on. some goals I met are i’m doing better with certain textures, like i’m touching Bananas and i’m making peanut butter and jelly sandwiches even though I hate the texture of jelly Jelly hasn’t gotten on me. That would probably be a big issue. but i’m getting better in those areas things I need to work on I still, i’m not doing very well at reading other peoples emotions, knowing how my words are going to effect others i’m still being a bit to blunt sometimes so i’m getting better slowly but surely. and I still have sensory issues regarding noise. also I heard from my POTS Dr. he is going to work with my geneticist who is sending him the IVIG script then my POTS Dr. is going to send the IVIG script to an outpatient infusion clinic connected to the hospital that my POTS Dr. has privileges at. so i’m going to be getting my next ivig infusion at a hospital infusion clinic which is perfect! and the script is being sent to the infusion clinic and they should call me to schedule my next infusion and i’m hoping to hear from them sometime this week. My POTS Dr. is keeping the saline, the iv benadryl and we are changing the phenergan to as needed no steroid cos that most likely what i reacted to and yes I am a little nervous to start IVIG again based on how badly the last one went but this is the most useful treatment in treating my immunodysfunction which is causing so many other issues so i’m just ready to get this done right and i am so thankful for good Drs. who are willing to help me. This hospital infusion clinic is an hour away which I can’t drive myself that far and i need someone to go with me so, might be tricky if they only infuse on the week day because Judd works full time. and its not good for him to take a day off because he just started this new job but iv’e got family, iv’e go friends well figure something out. i’m just really thankful i’m going to be in a safe location and its all coming together. I actually feel well enough to eat, so I heated some leftovers from last night. Except for the mac and cheese, cause I actually like cold mac and cheese. I know that might be weird. I was able to eat! I ate everything on my plate and that is a huge success and a reason to celebrate even with my gastroparesis giving me issues lately. I am dealing with nausea now and some stomach pain and bloating. But still, I ate and that’s a big deal because I weighed myself this morning and I lost 2 more pounds in addition to the 8 I lost last week. So definitely trying to eat as much as possible and keep it down too. Not just eating, but keeping it down. And i think I’ll be able to do it. My weekly port care supplies are in and all my infusion bags for the next week for my POTS infusions. And I got a call, my cousins are coming to see me. One of my cousins lives in California but she came to Orlando to see one of my other cousins graduate with his bachelors from UCF. And I wanted to go to his graduation but if ya’ll have been watching my vlogs, you’ll know how terrible my health has been lately. So just that traveling from Tampa Bay to Orlando, it’s like two hours. Just wan’t feasible for me, I wasn’t going to be able to go. But my cousins are awesome and they’re coming to see me. So ya’ll get to meet them, I get some family time. And one of my cousins has never met Harlow so this is going to be an awesome reunion. You happy to meet the family? You have no idea what’s going on. Yeah, you’re just gonna meet people and be so happy, the Happy Hippo. Who’s here Harlow? By the way, Judd’s home. Hi! Hi Jaquie. Hi Daniel. How are you doing? I’m good…. You guys are all in the vlog. Here you can take this now. How’s it going? Congratulations, on Oxford and UCF. How’s it going, long time no see. Good girl Har. Harlow’s obviously enjoying herself. This is my cousins Isabel, she lives in LA. Tell the people what you do. I struggle Aren’t you going to school? I was, I haven’t since October, but I’m gonna go back in June. So she’s going back to school in June and this is my cousin Daniel, her brother. They’re come from my mom’s side obviously, they all look very Hispanic. Isabel: We do? Jaquie: Yeah! Isabel: Oh my god And he just graduated. And now he’s going to Oxford in England, this is crazy. Isabel: He’s going as far away from us as he possibly could. Daniel: I’m going very far away. Tell them your major. Physics And now he’s going to major in Oxford in the philosophy of physics. He loves philosophy and he loves physics, so it’s perfect for Daniel. Daniel: It’s perfect! The department is the second best in the world. Jaquie: He’s gonna be so happy. Daniel: Yeah, I’m gonna be really happy. I have made dinner and we’re gonna sit here and enjoy each others company. My goal is to eat everything. Judd: That probably won’t happen. Judd: Look at that, you’re all done. Judd’s plate, I’m tapping out. Are you gonna eat that in one bite? Judd: Are you not? That was literally half of my chicken. Oh my goodness. Judd: It’s bulking season, shut up. Guess who just won at UNO, I did! Daniel: You can not win with this card!
Jaquie: Yes, yes you can! You can finish with a wild card. Daniel: No! Somewhere here Jaquie: Yes you can. Yes, I won. Daniel: These rules are wrong! How are the rules wrong?! It’s on the box. (Lots of other yelling) Oh my goodness. These people… I won, sorry Daniel. I’m not actually sorry. Isabel: We can play again. This actually a big deal cause I’ve never won a game of UNO. Alright, Isabel the film major didn’t know how to take a video on the camera. Got that issue fixed. Isabel: Maybe that’s why I don’t get a job. I’m a shuffler. And then I can do the other thing. Isabel: Ok, take two! Alright, alright, alright. Isabel: Wow, you got it! Judd: Harlow Jaquie: Harlow what’re you, why do you. What’re you doing? No! These aren’t for you. Isabel: She wants to shuffle too man. So my last shuffling looked cool. But apparently this is way more effective cause I didn’t shuffle the deck very well last time. Isabel: Now she has joined the Judd(?) shuffling club. Judd: Hey, Las Vegas dealers do it. Isabel: I’m pretty sure they don’t. Judd: I seen’t it. Seen’t it with my own two eyes. We’re in bed! And ready to go to sleep. I’m feeling really exhausted. But it was so fun to have my cousins come over and play UNO. And I won at UNO. That was fun. I beat you! Judd: That’s one in Spanish. Bilingual family. So, it was a bummer that I couldn’t make it to my cousin’s graduation. But I’m just glad my family understood. And people have asked me, “Well what do you do when your family or friends or people in your life don’t understand that you can’t do things cause of your chronic illness.” And honestly, I remove people like that from my life. I don’t need that kind of negativity. Right babe? Only positivity here, high five. So anyways, we’re exhausted and we’re going to sleep. So we’re gonna thank ya’ll as always for joining us on our adventure. And we hope ya’ll have a good night. He really asleep?! Anyways, bye!
– [Annie] Hello, hello! This is my scrappy VidCon 2018 video, so let’s just get into it. Met up with Chase and Aaron, and talked about the intersection of gender and disability,
and went to Whole Foods. Connor and I caught up and cried and talked about gender
and transition a lot, and then we watched Queer Eye
season one for the first time. And it was pure joy. Their cat Socks is a perfect angel. All the rumors are true. (laughs) Then I stayed with Andrea, and had a vegan wrap and
wellness shot for breakfast. (laughs) Ran into a very punny church
on the way to the hospital. I also noticed that where I was staying was just a couple of
blocks from Hotel Cecil, which I thought was really cool. And then we sat in a rooftop hot tub looking out at the city skyline
at night, and had Chipotle. Day One. Met up with Sarah and
Jenny, met Ash and Grace. First night at VidCon I met
up with Jessica and pals, and they are the lesbian squad of dreams. I got a moving photo where I look like a warlock spinning light. Day Two. The next day, Rachel arrived. Rachel and I raced in our power chairs. (screaming) – Oh, shoot! Oh, man! Oh,
she’s comin’ for front! – I’m Annie Segarra,
Annie Elainey on YouTube. I identify as a non-binary woman, or demiwoman, genderfluid, genderqueer, there with exploring all
these words that feel right, and my pronouns are kind of indifferent, but mostly she or they. For my own mental health,
I think that it’s better to try and love it, to try and accept it, because I don’t wanna be miserable. I don’t wanna hate my body, and I don’t wanna hate
my life or hate myself. So even though I would
never sugar-coat my disease, and be like “I love it 100%, “it is so great to be
in pain all the time, “and get injured all the time,
and be in bed all the time, “and all the shitty aspects of it.” Um… I don’t love all the shitty aspects about being really, really sick. Um… But I wanna be happy, so
I’m gonna try and be happy, and I’m gonna try and look
for things to be grateful for, I’m gonna try and figure out how I can accept these
things about myself. And disability in regards to transness is also its own obstacle. Trying to get surgeries, or get anything that’s very gender affirming
on your disabled body. First, there’s the economic obstacle, it’s finding the money to do things that are very
gender-affirming on yourself. But then my disease makes
surgery extremely risky. My disease makes surgery,
the typical recovery time: double time, triple time. And even more painful
than the average person. And painkillers don’t work on
me, so that would be terrible. I had surgery once and I woke
up and I felt everything. They had sliced into
my calf, into my foot, and basically I went into shock, because I was in so much pain and didn’t have the
energy to scream anymore. So that makes me very hesitant to get any other kind of surgery, even though I may really, really want it, really, really need it, I have to think very
hard before I do that. – After that, rode out
with my #WheelieQueer gang, and did two videos with Jessica
about disability and gender, and disability and body image. That night, we had
YouTube partner reception, where Kaitlyn had such
intensely kind words about my performance at the gender panel, and I sobbed in their arms. (dance music) Day Three. Rachel, Chase, Aaron, and
I watched Bo Burnum speak, and his words were like
a damn orchestra. The violins, y’all. Chronic illness panel’s actually
the one I didn’t cry at. Doctors are not gods. And they have biases,
they have prejudices. They can be bigoted. There’s a lot of struggle right now with sexism in the medical industry. Medical industry, haha, has
a lot of improvements to do. Sexism is a big part of it, so if you are femme-presenting,
if you’re a woman, if you’re anybody, to be honest, but it does happen a lot more
to people who present femme, or who are women, if they
come to the doctor with pain, the doctor’s like, “You gotta suck it up. You gotta get a little stronger. Come on, come on. You’re not practicing
walking in those heels, like, it’s what your people do.” If you think about it,
how small you must feel, how trapped you must feel, like, “How do I get out into the world? How do I get my needs met? How do I step outside my house if nobody believes that I’m sick?” Um… But– So that’s, I don’t have
the answer for that. That’s something that we
have to keep discussing, and hopefully progresses over time. …Be like “Oh, I could never do what you do”, “I could never live
with your illness”, like, worst comes to worst, “I would
kill myself if I were you.” (Audience member groans) And it’s just like, the
first thing I always say to these people who say
things like that, I’m like, they wanna imply that you’re brave. They’re trying to give you a compliment. I’m like, “It’s not brave. “You really don’t know
what you’re capable of “until you’re in the situation, “and I think you’re gonna be surprised “if you really, genuinely think
that you cannot handle it, “or that I’m brave for handling it, um… “where your strengths are. “You’re gonna be very
surprised with yourself. “Like, what you’re capable of. “Because you want to
live. You want to be here. “You love life, and so
you’re gonna figure out “how to make it continue… happening.” – Look at my beautiful little angels playing with beautiful little angels. – [Person Offscreen] Look at them! – Afterwards, we did photo ops with Rachel and Kat Blaque
in the Twitter Lounge. My friend Sarah came in
time for the expo hall, and we all took cute pictures with props and played with puppies! – [Annie Offscreen] This is so much. – So sweet! – [Person Offscreen] Still packed in here. – [Annie Offscreen] Oh my
goodness, oh my goodness. (squealing) – [Sarah Offscreen]
You’re kinda like a magnet for love right now. It’s pretty great.
– This is amazing. – [Ash] Hey, baby, there. (cooing) – [Annie Offscreen] Oh my goodness! – Do you see this? – [Annie Offscreen] Oh my
goodness, oh my goodness. Oh the puppy, the puppy! – [Annie Offscreen]
Look at this! (laughs) -[Stevie] Look at everyone. Everyone’s a friend. Everyone’s a friend. Don’t worry. It’s okay. It’s okay.
– Little baby. The baby. (Annie laughs) No one’s–why’s she
growling? She’s so mad. – [Annie Offscreen] I don’t know. Oh, it’s a party. (dog barking) – [Annie] That night, we all hung out till very late in our hotel rooms and played a game of
Paranoia with everyone. Day Four. Disability panel went well,
and I cried at some point about giving the kids a chance and NOT teaching them ableism. – It’s about, again, it’s about exposure, it’s about helping people be connected, especially at young ages in the school. It breaks my heart thinking
about that in the school they separate disabled
students from abled students. That they’re kept from a distance. And that’s only reinforcing that idea… that they’re different from you, and you can’t look at them,
and you can’t touch them, and, like, I’m gonna
freaking cry right now. And that goes all the
way into our adulthood. That it’s the same, it stays the same. Adults, they grow up thinking that. They grow up with this culture of, like, “They’re less than me, they’re weird, I don’t wanna interact with them”, ’cause it’s social status too, right, they’re low social status,
“They’re the weirdos, they’re the freaks.” And they hold onto that for
the rest of their lives, ’cause everybody loves
a good social status. Everybody loves being the cool kid. – Did you ever internalize
that for yourself? – Oh, yeah. ‘Cause I had undiagnosed disability for the majority of my life. Thank you… So, like, that sucks so much. It’s just such a huge thing for it to be normalized in that way. And if, you know, sometimes, right, let’s say you live in a community where there are no disabled
people, which, wow. But then that’s when media
representation is so important. We can create that
impact by reaching people through their laptop screens, through their television screens, through their movie theater screens, when you, what, there’s 20%
of people in this country, probably more undiagnosed
people, have a disability. So why aren’t we visible in the media? Why don’t people know who we are? Why are people so afraid? – [Annie] Took some photos
at the Latino bodega, and in the stuffed frogs
at the Instagram lounge. Did a podcast with Chase and Aaron. – One, two, three, go. Oh, shit. (singing) – [Annie] Stevie took me out
to a cute soul food dinner at a place with an accessible bar. Then through the Hollywood stars, and past the real Chinese
theater to Hotel Roosevelt, where we had drinks and
looked at old architecture. And yes, the history was preserved and they made it accessible, who knew? We had a nice queer get-together night, filled with healing, manifestations, food, drinks, YouTube, and
living room light shows. – [Person Offscreen]
A scam psychic medium! – [Other Person Offscreen]
Tell people, like, ooh, I’ve been connecting with the spirits. – [Annie] It’s amazing. The company I keep is really magical. They are magical, powerful,
world-changing people, and I am honored to know
them and to love them. Thank you so much to VidCon for all the opportunities you grant me, but especially the
opportunity to be among people with shared interests,
people within my community, and people doing really
brave and wonderful things. And I’ll see you all eventually. Bye! (Rock music)
♪ [intro music] ♪ [Mental Illness Los Angeles] Oh… We’re about to get onto the freeway. ♪ [down-tempo hip-hop music] ♪ [Narrator] L.A., the City of Angels. Palm trees, sun, and beautiful people. But there’s another side to this city. There are places that tourists should never go. Places even locals try to avoid. This is Skid Row. A place referred to as
America’s only third world city. It’s home to hundreds of homeless people. Many of whom are mentally ill. or impaired. We’d been warned, but nothing
prepared us for what we saw as we cruised the streets
leading to the heart of Skid Row. We’ve filmed in plenty of places but we were surprised how bleak
and frightening this place is. Film crews aren’t welcome here, and none of us wanted to
get out of the van. [inaudible] Our first destination was
the Union Rescue Mission. It’s the largest and oldest
organization in the USA working to support homeless people. It was started by the founder
of Union Oil, Lyman Stewart, one hundred and eighteen years ago. [Man] Skid row in L.A., which is really like
one of the worst human disasters in the US, and it’s really been
caused by corralling and containment of people who are struggling
with homelessness. [Narrator] Thirty percent of homeless people in the US
have some form of mental illness. If you’re poor and mentally ill,
you have few options before you hit the streets or jail. [Man] And you never know, which came first.
Sometimes the mental illness comes and leads to homelessness, but certainly
prolonged homelessness and suffering devastation on the streets,
being robbed, and beaten, and mugged and if you’re a woman, much worse.
Certainly leads to depression and other issues of mental health,
so we’ve got to make sure that we don’t leave one precious
human being on the streets, that’s really the bottom line. [inaudible] [Narrator] Andy takes us to what feels like
a disaster zone. He makes regular trips here,
handing out water. He’s insisted on bringing eight
minders along to make sure our cameras don’t upset people, but I wasn’t prepared for the barrage
of people coming up to us. Man, you want water? No? [inaudible] the United States Marine Corps,
my name is Lunatic, I’m gonna say Julie and Rydell, we alive ya’ll! According to the 2007 statistics, up to 142,000 men, women, and
children become homeless over the course of any year. Up to 74,000 people are homeless
each night in Los Angeles county. Half the homeless are single men,
25% are single women, and the rest are entire families. We are the capital of homelessness, we have more people on the streets
in L.A. than in any other city. Double of what New York and
Chicago have combined. Every suburb, every region,
every city has kind of dropped off their folks who were struggling
in this spot in L.A. and forgot about them. We’re not living up to being
in the City of Angels and we’ve gotta work toward the day when
we don’t have one precious human being on the streets and that’s
gonna take a lot of work, but mostly, it’s gonna
take a heart change. [Man] What sort of feeling
does this give you, Andy? [Andy] Just encouraging to give folks
a cold drink of water and a little bit of encouragement
and some hope, because I mean [Reporter] To get through the day for you, I mean
you see a lot of sadness, I mean is this just sad too.
Is this getting you through? Doing stuff like this?
-[Andy] No. Yeah, it helps but what really helps is when
somebody gets a bottle of water and they decide later on because
they know where the water came from they come in and ask for real help. [inaudible] [Narrator] Andy once spent a night out on the
street just to see what it was like. [Andy] I slept like thirty minutes ’cause
a guy said he’d watch my back, you know I took a little nap, but that’s all I got. A friend of mine that spent twenty years
said, “Andy, after six or seven days, that fear would’ve been replaced by anger
and you would’ve adapted ’cause humans adapt to anything.” We realize they’re precious people,
they’re somebody’s aunt, somebody’s uncle they’re somebody’s precious baby
that they held in their arms and we need to quit referring to people
as “the homeless” or “the drug addicted” [Narrator] It’s hot, a dry, searing kind of heat. [Man] We’ve only come about…
maybe fifty meters. We’ve handed out over
two hundred bottles of water. It’s gone. [Andy] We experienced a tsunami of families
in this latest economic downturn, and about 53% of the families who
came our way were experiencing homelessness for the first time in their life.
They lost their home, they lost their job,
they lost their apartment, they ran out of funds, they ended up
in a hotel ’till their savings was gone, then they moved to their car, and then
the last stop was a place like Union Rescue Mission and we relaunched
probably about 45 families, including I think three are getting
relaunched this week because we didn’t leave them in
homelessness long enough to suffer the devastation of homelessness. You wouldn’t have wanted to visit here
before the safer cities initiative You couldn’t. I couldn’t walk down the street
without having to break up a serious… pipe fight or knife fight. It was described as Mardi Gras on crack. And it was very dangerous,
and now you can see we can walk down the street–
-[Man] Yeah. -[Andy] pretty safely and without
the police we couldn’t do that. -[Man] Yeah. This is our day room for our male folks
who come in and are staying with us and they can come in and
just have some quiet time, just to get off the mean streets
down here on Skid Row. [Narrator] People can sign up for
beds, enjoy three meals a day, and take what might be their
first shower in weeks. -[Lady] Good Morning Sweetie, how are you? [Narrator] Here, cuts are provided along with
fresh clothes, and medical care. Therapists are on hand to assist the
mental state of those who turn up here and work out an action plan. The Union Rescue Mission provides a
real opportunity to get off the street and start a new life. [Lady] This wall is the wall
where, when folks come in and they’re sick and tired of being
sick and tired and being on the street and they want some help, they sit in
these seats for about 14 days, that let’s us know that they’re really
serious about getting some help. [Lady] It’s full every night. This place holds
I think about 160 single women, and we’re full, we’re overflowing, and so
we put out cots in the area downstairs where I showed you the dayroom for the women as well as the men,
that’s our overflow. [Man] So, how long essentially
would somebody stay here? [Lady] Normally, it would be a month and then
after a month, you have to try and get in one of our programs,
to try to get off the street, or just go away and I guess,
stay somewhere else, but because we’ve had to bend the rules
a bit, because we’ve really had nowhere to send anybody, so we’ve had to let
them stay a little, a lot more than one month. There’s like 160-odd beds here,
and as you can see, most of them are made, which means that somebody’s coming back for the night. There’s very few that aren’t made.
This place is full. And overflowing. Yeah. [Narrator] The question going around
in my head is, “why are all these people here?” For many, the bottom has
fallen out of their life. But a whole lot of people
living here are mentally ill. Hospitals have even dumped unwanted
mentally ill patients here on the street. [Andy] Actually, I was standing out front,
and a cab pulled up, did a U-turn dropped a woman in a nightgown
in the middle of the street and she started wandering this way,
and I called the police and sent a staff person to rescue
the lady off the street. We had a video tape of that
from our cameras and that played all around the world,
and it was the first time… it had been documented that hospitals
actually drop off patients. She was from 20 miles away. So they
dropped this woman off in her hospital gown in the meanest streets of Skid Row,
she had dementia, she had high blood pressure and a fever, and if we wouldn’t have seen them
drop her, we wouldn’t have rescued her. She’d have been on these streets, and the
hospitals were fined, and they set up a protocol, and my wife and I set up a special referral
sheet, that they get properly referred and can we or can we not take care
of the needs of that patient? Yes or no. And set up a system, but then we found a
man wandering around out here who had nine prescriptions for anti-psychotic medicine,
and he’d been dropped off by a mental hospital 40 miles away,
and the city attorney looked into it, and found that 155 mental patients had
been dropped off on these mean streets in 22 months, and they were
fined 1.6 million dollars, and now there’s a city law
banning the dumping of patients in Skid Row LA, and South LA,
and that’s the thing… doctors are sworn to do no harm,
and yet hospitals were dropping the most vulnerable people in our
society off on these meanest streets really in the country. Sharon Cameron was homeless
for nearly 25 years, and has struggled with mental illness
and drug addiction most of her life. [Sharon] I would just grab anything, to
just make what I was feelin’ go away. And then your body is burnt out,
my slogan was, I felt like I was dipped, cooked, and fried, the only thing
left was to toss me to the side. -You used to sleep here?
-Yes, sleep here. If you notice, people still sleep here.
All this back here, because it was safe, it was not too light,
it was not too dark, you know, you can kinda peek up and
see what’s going on. -And it was warm?
-No, it was cold. In the summertime it’s okay, but it was hard.
-What did you sleep on, cardboard or something? -We had, in the rain, put the cardboard up.
But see, they don’t allow that. This is a public library.
-When you’re laying here, what are you thinking? …Is this the worst thing
in the world, or what? Actually, I didn’t have a thought,
I just stared at the sky and you see, I was not only homeless,
I was gone mentally, and I didn’t, it was, just existence,
you know, just balled up for the night existence, worry about who’s gonna hurt me,
of course, and who’s gonna, you know, men take advantage of ’em– women. I mean, you wait– when you first pass out,
I pass out and like I said, I go to sleep. I pass out and when I, I just came to,
can you imagine? And you know, sometimes I didn’t
really know where I was. I didn’t, oh God. It’s an
indescribable feeling. It’s just like, you know, that’s when
you go off into depression, deeper and deeper and deeper,
and just wishing you never wake up. You know, of course there’s suicide
comes with that, and I just kept trying and I kept trying, so I just got disgusted,
I said, I can’t live and I can’t die so I existed. -[Man] So, how long did this last for?
How long were you on the streets for? -This lasted almost 20 or 30 years, off and on. -[Man] Just to get a bit of background,
you were one of nine children. That must have been
tough growing up. -Yes, I have three older than me,
my older sister committed suicide at 25. I was really jealous ’cause she succeeded,
but not no more. Then, my brother he’s in Seattle, he’s doing well.
Then my sister, Deborah, I’m trying to help her, that’s the one
sleeping on 65th and Western and it’s really bad. And then comes me,
but and then five little boys up under me they all have different fathers,
so that let’s you know that environment with these men coming in, you know what I’m saying?
I love my mom, she was young, and no I don’t, I’m not
the one that talk about she was young and she
made a lot of mistakes. -Trouble started for you pretty early.
When were you diagnosed? -Well I knew something was wrong.
I knew something was wrong, ’cause everybody’s smiling
and I didn’t get that. You know, it didn’t look like
the sun was shining to me, it hurt my stomach. -When was the moment you said,
“I can’t do this anymore? I’ve gotta… do something about this, you know
I’m fifty-years-old now, you know?’ -I went downtown, and I just took
all sixty of those pills and I said a prayer. I never forgot to pray though, never.
I’m talking the cell phone, “Lord, where are you?
Please come help me.” So, I took the pills and I prayed,
and do you know, I just froze– I didn’t even go to sleep.
So, that’s when I realize, this is, I can’t live and I can’t die.
That part I knew clear. That’s about the only thing
that made any sense to me. I kept thinking, “this man up here
got a plan for me,” ’cause I really don’t want to be here
and I don’t know how to live that’s a cold situation. So that’s when I went to the Excelsior House,
that’s a great place too, I love this program. -So many people are needing help,
that counselors struggle to reach them all. Sharon needed to take the first step. -This room, you got all the ehtereal lights, huh?
-Yeah, that’s, everyday is Christmas to me now. I love this place called Earth,
I never thought that I would say this, look, everything is very peaceful. [Narrator] Sharon’s been off the
streets for just a year. She now works as a peer advocate
for the treatment center that saved her. -[Man] Every day for you now is like,
you wake up and it’s– -Yeah, I’m just ready to help someone.
See, as I climb, I gotta make sure… I have something in my hand,
and my doctor and my therapist told me don’t overdo it, but He got me. -Yeah.
-Yeah. [Narrator]: Now Sharon’s eagerly helping
as many other homeless people as she can. She has a spare bed set up for the
homeless people she picks up off the street. -This is Jesus carrying me. If you notice, he’s
carrying me through the storm, the rain, the quicksand. I mean,
there’s every– see it yourself. -Right.
-It is what it is. Look at that. Beautiful. Do you know I have a problem with,
this is why I’m afraid now for me? ‘Cause I feel like I don’t deserve anything.
Every time I would do good, then I’ll make sure I kick myself down. And I’m really aware of that now,
so I’m really watching myself now, and I’m talking about it to
everybody that will listen and have that feeling in their heart. -This is your sister?
-Yeah, that’s my sister and this is me. -And she lives– -She’s about eight, yeah. I would like
for you to see her. Maybe she could– -Maybe we can go today and see her.
-I sure hope so. I really need help with her but I’m doing– yeah. So you can really
see what’s going on. -What is going on with her? She’s–
-She’s delusional, she’s sick physically, mentally, substance, she’s just
broken. She’s another me. How I was.
-Really? -Yeah, I’m trying to take some of this stuff,
these tools I have and I’m trying to spread them all over the world now,
and she just happened to be my blood. I just want to share the gift of life
with someone else. -Oh, I like that. [Narrator] Somewhere out on these streets
is Sharon’s sister, Debbie, or Angel, as she’s known on the street.
She’s lost in the City of Angels. -How ironic is that.
-[Narrator] We decided to try to find her. ♪ [hip-hop music] ♪ We head south of downtown L.A. to an area
most people will have seen on the news. But there are few good news stories
out of South Central L.A. -Every other corner, you see a
liquor store or a church. -Yeah.
-And that’s only in the black neighborhood. -Right
-And they sell Sysco wine, this really cheap wine. -Yeah.
-That, cause you to get drunk real quick and sick. [Narrator] Sharon is a success.
But hers is a rare success story. It’s all too easy for people to virtually
disappear into the vastness of the city. -We’re getting close to where we are. -60th.
-I think that’s where Deborah
was sleeping back here. -Lot of trash.
-60th Street. Yeah, that’s where she sleeps back there. My mother died when I was 21 and I had
the 13, 14, 15-year-old kids to raise. -Yeah. Where was Debbie at that time? -Deborah was already messed up. She was from the age of, Deborah was abused really bad. I would sleep up under the bed
when Deborah was being raped. I was like seven and she, I was like five
when she was seven, so that’s another reason why I’m so determined to help her,
because I know what happened to her. -Yeah.
-I saw it happen. -And then she tell somebody and my mother
say, “what goes on in the house stays in the house,” so I said I didn’t see anything,
so can you imagine all that piling up on her?– -Yeah.
-Inside as a little bitty girl? [police sirens] I’m gonna have to turn.
Hey, have you seen Angel? You haven’t seen her? Alright.
She also sleeps in Compton. -Yeah?
-Yeah. -How does she get there?
-Huh? -How would she get there?
-Panhandle. See, last time I picked her up, she was
on that porch right there asleep, in the rain.
[Narrator] As we search for Angel, we come accross one of Sharon’s friends
still living on the street. -If it’ll help somebody, we trying to get some help
-We just got on the freeway. [Narrator] She’s nervous of the
camera and refuses to talk to us. -You have any change?
-No, I don’t have no money in my pockets. [Narrator] Just meters down the road,
a newly homeless guy. -You still homeless?
-[Narrator] There are people in need everywhere. -Hi, I’m Louis.
-Nice to meet you, man. How are you?
-Good. -So, this is your home right now?
-Yeah, this is my bed and my clothes underneath that. This is my home.
-Yeah? What put you into this situation? -I think financial reasons. Not enough money
to afford all that commodities and stuff. I think it was a financial reason.
-And who’s helping? -Right now?
-Yeah. -Well, I wait for public assistance and
I just live on whatever I can get out here. There’s more of the homeless
people right there. Yeah, she always– they fight over blankets. Que paso? Have you seen Angel? -No, who are ya’ll?
Why are ya’ll watching me… on camera? -I’m looking for Angel.
I was looking for Angel. -Angel in jail.
-Oh yeah? -Yeah.
-Why you look mad? You don’t know Angel’s in jail? -No, that’s my sister.
-You talking about skinny Angel? -Yeah.
-She in jail. -Alright. Wow. -She got problems when they
raided the house down the street. -What was she doing? Smoking crack? -No, she bough something for
an undercover police officer. -Oh, God! She’s gone to jail. She’s gone. -So, not so good news. -No. No, I don’t really know how to digest that,
but the one thing I know for sure is that she has a second chance.
Sometimes you don’t get arrested, you get rescued. [Narrator] Angel’s story is typical.
In and out of jail, on and off the streets. And a mental illness and
drug addiction to boot. But unlike Sharon, Angel is not ready
to let go of the only life she knows. -You know, sometimes when you’re out here… you just take anything just to
make the pain go away. -Not a nice way to find out though, is it?
From somebody else. -No, it’s horrible. I’m hurting.
I guess I’m hurting. [Narrator] For 25 long years, Sharon
lived on these streets. Not lived, existed. There are organizations striving to help
people living with mental illness, but the problem is so overwhelming. Too many people just end up
back on the street or worse… in jail. Some say, the L.A. county jail is the de facto,
biggest mental institution in the world. It’s the evening muster
at the Union Rescue Mission. There, people with nowhere else to go. It’s scary to think how easy it is to
slip off the edge in the United States. If you lose your job and miss
a few payments on the house, there’s often not a lot standing
between you and Skid Row. This is the first dinner
session of the evening. They’ll feed about a thousand people tonight,
first of all it’s the women, then the men, and they also feed the families separately as well. It’s a lot of mouths to feed. [Narrator] Up on the roof,
it felt like a million miles away. The sun was still shining, and it was
another beautiful L.A. sunset. Downstairs, they were setting up for the evening.
Staff here at the rescue mission know they have the skills to
help people back on track. People need to make a
conscious choice to seek help. But if you have a mental illness,
that choice isn’t so clear.
Hi! My name Elsie and if you don’t want
to hear an intro please skip to a timestamp below!
Otherwise, hey everyone! For those of you who don’t follow me on other social media,
I am a third year undergraduate at Harvard University who studies sociology with a focus
on Disability Studies. I myself am disabled slash chronically ill, I have Cystic Fibrosis
alongside other disabling conditions. I fluctuate between having a visible and invisible disability
based on whether or not I am using my wheelchair as a mobility aid or using other indicators
like my cannula. It’s no secret that we live in an ableist world that sees disability
and illness as something inherently repugnant, and that the more in which you visibly embody
your condition the more you might be judged for it. Like, if I’m out in public in crutches,
or in my wheelchair, or even wearing a surgical face mask or using oxygen people are avoidant.
I’ve had people do everything from pat me on the head, refuse to touch me or go near
me, mock me or treat me as though I am not the thinking, feeling, young woman that I
am. There is a social resistance to seeing illness
and disability as normal and acceptable forms of human variation, that our existence is
not attractive or valid unless we view our condition as lesser than that of an able-bodied
person. And that because of this we somehow become less attractive or less deserving of
love and companionship. I want to echo the blogger crippledscholar’s
sentiments on this, that quote : “I want to see disabled people culturally framed as beautiful
and I want this to happen without a flurry of think pieces on how progressive it is.
Those think pieces are evidence of how strange it still is how people still feel the need
to applaud it. The change will come when disabled people can be portrayed as beautiful and sexual
and the response is to agree and admire that beauty without qualification. I don’t want
any more disabled people growing up to be told that no one will want them just because
they are disabled.” Endquote. We should be seen as beautiful without our
illness or disability serving as a caveat to our beauty, and I try to use fashion as
a way to break down the barrier that illness and disability creates. In my own experience,
I seek to not necessarily conform to an able-bodied ideal of personal expression, but rather adapt
my fashion and art for my own bodily needs. Because of this I have long had a passion
for making videos, and posts such as this which showcase the ways I use fashion in hopes
that it will inspire others to use their own creativity to change the ways they showcase
their illness or disability. I really want to stress that my intent for
this is not to tell people that you have to in conform or change your appearance in order
to be “socially acceptable” as someone who is disabled and/or chronically ill. Rather,
I hope to explain the ways in which I and others have used fashion as an art form to
embrace our chronic illnesses and normalize them.
I’ve divided this video into types of fashion concerns and medical devices or aids because
plenty of issues such as bloating and PICC lines are common among multiple chronic illnesses.
I have time stamps in the description below if you’d like to hear about specific things,
so without further ado let’s get into it! I already did a video dedicated entirely to
wheelchair fashion, but I do feel like I’ve gathered a couple more tips during my time
at college in a city with terrible cobblestone roads and also just by being a college student!
First, short sleeves, ¾ sleeves, or long sleeves with elasticized ends like these are
your friends. As much as I love long, flowy, or poofy sleeves, they are super inconvenient
while in a chair! I find that they get in my way when I’m trying to push or they get
really dirty from the wheels. Now, I am only a part-time chair user so I save cumbersome
sleeves for when I’m using forearm crutches or walking without an aid.
Second, and probably the most useful, is choosing a backpack. Finding out which backpack works
best for you and your chair is honestly a bit of trial and error. I have gone through
about 4 backpacks, but so far I personally find that I really enjoy my Fjallraven backpack.
It’s quite difficult to hold onto things in a chair, and if you don’t have side pouches,
the easiest way to hold things is with a backpack. Having separate compartments for your laptop
and other stuff as well as side pockets are super convenient. Backpacks can be a really
fun fashion statement, but they also need to be practical, you want to make sure you
have a bag that can safely store your belongings, and which can withstand the elements. If the
backpack that is the most functional for you isn’t very cute, keychains, pins, and iron-on
patches are always your friends. I used to use forearm crutches or a single
cane consistently for about 4 years. I’ve transitioned out of them and use mainly my
wheelchair for my weakness, or vertigo but I still do have tips on how I fashioned my
canes and crutches! Firstly, I would recommend the brand of forearm crutches that I have
always used: WalkEasy, which I’ve linked below. I really like them because their crutches
come in a TON of colours, including glitter! And suit a range of heights and sizes. They’re
a good price and a great place to start in terms of customization because you can start
off with a base colour that you really like and will compliment your outfits.
As for single canes, I never used a consistent brand and usually ended up getting some pretty
meh black and grey canes. So what I used to do is take glitter or decorated washi tape
and run it from the tip of the cane to the handle in order to give it some pizazz, ahah.
If you feel like getting a specifically cute cane, etsy is a good resource to find some
cool woodcarved and custom blinged out canes! I’ve linked a few I found cool below, just
make sure that if you purchase a cane which is not adjustable that you check with an occupational
therapist or measure for yourself what height the cane should be in order to best suit your
If anyone has seen my old DIY cannula video, you know I like to jazz my cannula up. In
college it’s tougher to get access to glue guns and stuff, so my quick solution is to
use ribbons and chokers. I will either choose a nice ribbon, which matches my outfit, and
tie it either just around the cannula when it’s a high neck shirt. Or I will tie it
around both the cannula and my neck, and in case if I don’t want to use a ribbon I can
always use a choker. Fabric or lace ones tend to work best for this. If you need to wear
a surgical mask to avoid illness either with or without cannula, I suggest buying large
packs of disposable surgical masks as they are much more protective than reusable cotton
masks. I personally use these cute Disney masks, not only for the aesthetic, but also
because I’m very small and only pediatric masks fit me! When it comes to carrying Oxygen, I currently
only use a max of 2 litres per minute so I just own a smaller portable O2 converter which
comes with a rolling carrier. O2 converters and tanks are things I think you can have
a lot of fun with! Right now on mine I just decorated it with some glow-in-the dark stars
pressed on with sticky tack, and a cute pink ribbon because that’s what I have here at
college! But I plan to hopefully do something more fun with it in the future. Some ideas
I have are: 1) using adhesive googly eyes and construction
paper to give my O2 a cute little face 2) Cutting out magazine and comic book strips
to make a collage using modge podge painted overtop
3) Getting rhinestones and a glue gun or white glue to completely bedazzle it, or
4) Getting a bunch of fake flowers, including pink roses of course, and cutting off the
plastic stems, pulling off the fake leaves, then taking a glue gun and pressing a bunch
of flower heads close together to make a pretty floral collage. This is the idea I’m currently
leaning towards right now but if you have a preference or would like me to try an idea
of yours then please comment below! Bloating is a common problem for a variety
chronically ill people, to the point where you might get people asking you if you’re
pregnant. Over the years, I’ve found three main methods of hiding bloating as much as
possible. The first thing I wear is some form of high-waisted pant. High waisted pants draw
the eye to your natural waist and don’t cling to your lower stomach as much. I like
to go for looser fitting pants like culottes, or high-waisted pants with an accent like
a bow because they tend to be the most flattering. Now another type of clothing I reach for to
deal with bloating are dresses with a defined waist either that falls at my natural waistline,
or just below my breasts. Shift dresses such as these don’t cling as much to your body
and don’t add emphasis to your bloating. Pairing dresses like these with a blazer or
a cardigan serves to further camouflage any bloating you may experience.
The final thing that I find tends to help cover my bloated stomach is skirts! Particularly
maxi skirts or pencil skirts that reach my waist. They serve the same role as high-waisted
pants do, and I feel that maxi skirts are especially comfortable to wear when in a wheelchair,
or if you for any reason need to wear an adult diaper, a maxi skirt will cover that well.
I find that for incontinence diapers in general that looser fitting skirts, and culottes are
the best ways to hide that lovely diaper outline. The most common problems that people with
chronic illness have when it comes to bras are that they’re either
1) Too tight and uncomfortable which leads to pain or difficulty breathing and/or
2) They’re difficult to put on and lead to muscle or joint pain
My solutions for these problems are ones that I personally use. Since I have a lung disease,
there are many times when wearing a bra is restrictive to my breathing. To counteract
this I either a) wear a bra which has a lace band so it
is more stretchy and which is in my “sister size” meaning that it is one band size bigger
and one cup size smaller than my true size but still fits pretty well. My true size is
30E but I often wear a 32DD so that I can breathe better. OR
b) On bad lung days, I’ll wear a lace bralette with no clasps and minimal or no underwire.
This is the option I turn to when I’m having a worse lung day but still need to go somewhere,
since I have somewhat larger breasts that need support. Bralettes such as this Triumph
spotlight bralette which is just my personal favourites I’m unfortunately sponsored by
nobody, is good because it has a little support due to the way it’s sewn but also can be
put on like a shirt and is easy to breathe in.
To deal with bras that are hard to put on, I would suggest using a bralette like the
one I just mentioned which can be put on like a tank top, though possibly one with more
support, or a bra which claps in the front either with a Velcro or metal clasp. The amazon
links I have below are for bras which I find to be the best suited to dealing with chronic
illness bra problems, while at the same time not being ugly! Cute bras have the power to
make you feel good on some of your worst days and you shouldn’t have to compromise style
for comfort or accessibility. PICC lines are often unavoidable if you have
a chronic illness, and whether you have a PICC line which is a catheter in your arm,
or a catheter inserted into your chest as a CCV, you generally keep it covered not only
to keep it in place but also because you may not want strangers to stare at it. So a pretty
easy way to deal with this is to get yourself a fun PICC line cover armband that’s decorative
and can be worn with sort sleeves or underneath a looser long sleeve shirt that fits over
your line. Since CCV’s are on your chest, one of the
easiest ways to disguise your catheter is wear a shirt with a loose round or v-neck
in order to have easy access to your picc, and then use a scarf over top to hide the
catheter most of the time. My favourite way of tying a scarf is to fold it in half, put
your hand through the loop you made, and pull the other end through the loop! If you follow
more stringent modesty rules or use a hijab, try wearing a long head-scarf that extends
to the chest, or buying a shawl to wrap around your shoulders and chest.
———————————————- If you have a Ostomy bag, it’s generally
not going to be visible unless it can be seen under your clothes or during intimate moments
with others. A good option is an ostomy wrap, I’ve linked one below which I know comes
highly recommended and it quite cute! Ostomy wraps help hold and conceal your ostomy bag
under your clothes without forcing you to feel like you have to wear super baggy clothes
all the time! They also work great for intimate occasions to keep your bag from moving and
concealed so that if you’re insecure about leaking or the bag distracting your partner
it may be a good solution. If you’re just looking for something to
help you feel as attractive as you really are, then there are actually some wonderful
lingerie sets designed specifically for people with ostomy bags! These lingerie sets have
panties which have pouches inside them to hold your bag or feature garter belts to help
secure your bag in place. The one brand I’ve linked below is Jasmine Stacey, since I find
her designs very pretty and also she personally has an ostomy bag so she knows what she’s
doing! For a tracheostomy tube or stoma, you can
actually find lots of delicate, gentle lace neck covers on sites like etsy, I’ve linked
one shop that had really pretty designs down below. This is probably also something you
could DIY if you don’t wanna buy something premade by simply getting some thicker embroidery
lace and hand sewing it to some ribbon. The main thing is that it still needs to leave
you room to breathe properly so you don’t want to get a cover which is too tightly pressed
to your neck or isn’t breathable fabric so natural fibers like cotton are better! Now finally! I want to talk about hospital
glam! If you don’t know what hospital glam is, it’s a hashtag slash internet trend
started by blogger Karolyn Gherig, featuring fashionable shoots of chronically ill peeps
while in the hospital. Personally, hospital trips are when I’m
feeling my worst and least attractive and generally don’t have the energy to dress
up. My main way of feeling cute during a hospital stay is finding myself some truly adorable
Pajamas, I usually go for a tank top and shorts, so all the medical staff have easy access.
And with some super cute and cozy socks to go with it I’ll at least feel pretty cute
when I’m for a long haul. Here’s a star wars PJ set which is one of my faves that
I pair with some R2D2 socks, and possibly a cosy cardigan. Cosy and cute is totally
a thing, so embrace it. When you’re in the hospital you’re probably
also feeling at your worst so just try to do something that makes you feel great, like
the sky is the limit here. I just bought a diadem for a lord of the rings elvish cosplay,
but honestly I’m thinking of me laying in my hospital bed, hospital gown and all just
throwing on that tiara. Like, no one can stop you, you are the veritable queen of this two
person hospital room and you rule the area from the curtain to the window. You are not
just an attractive human being you can let yourself exceed human bounds and become an
ethereal being all while strapped into an IV line it’s totally possible, okay, just
trust me on this one! And well that’s all I’ve got! I hope that
all these tips were helpful to you, and gave you guys ideas on ways to up your fashion
game and use the typically “less attractive” parts of your chronic illness as moving art.
And I also hope that this video will encourage you to remember that you are beautiful and
desirable not inspite of your illnesses and disabilities, but including them and how they
help make you the wonderful person that you are!
If you want more ideas feel free to check out my Instagram or Tumblr at 65PinkRoses
same as it is here, or to check out my other videos on this channel despite how outdated
they are….they will probably still give you some other fun ideas!
Thanks so much for watching!
– Hello. Good morning. This is what I look like when I wake up. I’ve had many requests to do a day-in-my-life video in Tokyo. So, I guess this is how it starts because, this is the first moment of my day. I’ve already been awake for
two hours at this point, ’cause I was too nauseous to sleep. So that’s fun, I’ve taken
some anti-nausea medication. My mornings usually start quite slowly. Let’s just take a moment to
appreciate my cute fridge. (flakes clinking against mug) I’ve run out of cereal. What is this? This is pathetic. Mix it with my dessert
cereal, chocolate granola. I take 12 pills every
morning to help me out with my various chronic illnesses. I have a video that’s
more in depth about this, if you wanna check it out. Hello. – Hello world. Why do people want to see this? I do not understand. – This is a good
representative of our mornings. Is me bothering you, instead of actually
doing what I need to do. (beeps) Showering when you’re
chronically ill is exhausting. I usually only shower about once a week. I’m lucky to not be a
naturally stinky person, so I can usually get away with it. Also, I’m excited to announce that we have a new member of the family. So, you all know and love Buggy. Well everyone, welcome Petunia. She’s really good at dancing. (lively music) Oh, hey, nice dress you got on there. Psych! It’s actually a pantsuit! Hello. – Feels too weird with you
standing over me like this. – Hello, Luci. – Hello. – This is how I normally
talk to you in the morning. [Luci] – Yup. Yup, we vlog every morning,
but we don’t release them. It’s just the only way
we’re ever able to talk. (Annika laughs) – What’s your plan today? – What’s my plan? Well, I’ve had my shower and we don’t have any coffee left in here. So, I’m gonna get a coffee.
– Aw, don’t talk to me till I’ve had my coffee. – Oh, don’t talk to me
till I’ve had my coffee. Whoa. – Do you wanna help me do my physio? (Luci’s tongue clicking) – Now?
– Yeah. – Sure.
– Thanks. (upbeat music) – Tight? That a good tightness? – Yeah.
– A bit less? – No, that’s good.
– That’s good. – Okay.
– At home, we just have a hook that this hangs off. There’s no hook here, so I am the hook. (Annika laughs) – Look at these baby biceps! (Luci laughs) (Hands clap) Three hours after I woke up, I’m finally feelin’ good, yay! I should just film my, I just should pretend I’m
waking up now, all right? (gentle music) Beep beep beep beep! Aw, 6:00 a.m. Aw, (yawns) time to wake
up and go for a run! Oh!
I just woke up like this. – [Luci] I love those stay
at home life, type videos. They wake up in the morning and they so clearly have a light box. (Annika laughs) Like, pointed at them. It’s like oh,
– Yeah. – [Luci] do you sleep with
the light diffusion box pointed at you all night? (Annika laughs) – Bye, Luci!
– Bye-bye. – [Annika] Where you goin’? – I’m going to get, I think I woke up too
late to call it a breakfast? – [Annika] ‘Kay, bye! (upbeat music) Hoo! Gotta stop every 20 to 30 minutes or so to rest and stretch my back. ‘Cause otherwise, by the time
a few hours have gone past, I can not move. (upbeat music) Here’s a special message from Buggy. Sometimes, you feel flat. But then eventually, you
spring back up again. (upbeat music) (Wind blows)
(gentle chimes) Can you hear that? It’s the music that plays at six o’clock. Just in the street. Just to let you know
that it’s six o’clock. It’s really nice. (calm music) Check out this super cool sewing roll that I made for traveling. When it’s unfolded, it’s got a whole
different bunch of pockets for things like scissors, go in here. Woop! All my threads are in
here, in this section. (zipping) Got all these pockets with things in it. This was a really good way to use up a bunch of old scrap fabrics and, like, upholstery fabrics. I just made this pattern,
pretty much up from scratch. And it closes like this. It folds up. Like this. And then buckles up so it
can be transported easily. (subdued music) Hey. – Hello, everyone. – I’m a celebrity. (Luci laughs) Which is why I’m wearing
sunglasses at night. – Annika’s got light
sensitivity from her migraine, so she’s wearing her sunglasses. And it makes her look like, who sang that song? ♪ I wear my sunglasses at night. ♪ – I have no idea who wrote those. (Luci laughs) – Turn, don’t take this
down, copyright people. – Oh yeah, I think it’ll definitely pick that up.
(Luci Laughs) – It’ll pick that up. – Hey, Luci, what’s the worst
possible name for a dog? – Taxi. (both laugh) We figured it out, ’cause you’ll be walking
around your house like this. Taxi! – Hey, Taxi!
– Taxi! – Taxi!
– Taxi! – Oh my god, we’re actually
(Luci laughs) gonna accidentally call a taxi. – It’s exactly behind us like this. (both laugh) – That was a taxi. – That was a taxi.
(both laugh) Oh, boy. So Annika’s got her
meds in her system now. And we’re going to the supermarket. – Yeah, we were gonna go
see Detective Pikachu. [sigh] And I’m really frustrated that, like, we were
literally about to leave and then my body was like, hmm, nah. – Yup.
– You’re can have a migraine instead. – Oh, well!
– Which, you don’t wanna look at a movie screen. – No.
– When you’ve got a migraine. (Annika sighs loudly) But this lovely love here was like, Annika, everything’s okay. You know what, we can
just have a cozy night in. And we’re gonna go to the supermarket and I love going to Japanese supermarkets. I mean, I love going to
the supermarket any time. Even at home, but it’s really fun. It’s really particularly
fun going to a supermarket at a different country, I think. – And then I’m gonna make some dinner. – And then, Luci’s gonna make
us a really lovely dinner. – And then maybe we can
watch a movie at home. – Yeah, you’re the best. – Yeah. (Annika laughs) I know.
– Yeah. (Annika laughs) – I clean the house, as well. (Annika laughs) What a hero, huh, huh. – I’m gonna buy myself some
snacks and comfort food. – Mmm.
– ‘Cause now that. – I’m gonna get some mochi. – ‘Cause when you gotta
migraine and it’s real bad pain, you fricken deserve some snacks. I love you so much. – I love you too. (Lips smack)
– Ah! Yay, we’re here! Don’t think I’m allowed
to film in supermarkets, so I’ll do it real sneakily. (lively music) Why is it a trend at the moment for fruit and vegetables to be really sad? – [Luci] Whatchu mean? – [Annika] Why has it
got a sad face on it? – [Luci] Aw, yeah, I’m not sure. – [Annika] Look at this cheese dessert. Oh my god. Aw, mango parfait. – [Luci] I’ll get melon and you get mango. – [Annika] There’s just cheese sticks? – [Luci] Dried cheese sticks. – [Annika] Oh my god, yum. (upbeat music) What’s going on with these dudes? Are you eating them? Is that why their eyes are on fire? – [Luci] Oh my god. This is a seriously post-migraine shop. (Annika laughs) – [Annika] Oh, I love these soy milks. Oh, they have so many flavors. – [Luci] Should we get some fruit juice? – [Annika] Fruit juice, yes. – [Luci] This is a really normal thing in the supermarket in Japan. Cream of corn soup? – [Annika] You can get
a really decent dinner at the supermarket. Like a full sushi box. – [Luci] Look at this bento,
look at all these bentos. – [Annika] Look at these bentos. Like these, they’re like
three to four dollars each. – [Luci] Yeah, not bad. – [Annika] It’s pretty dang good. Like, look at that. Look at how much food is in that one. And it’s four dollars.
– Here’s, there’s the one you want. – [Annika] Hmm, maybe I’ll get a onigiri. This is orange-flavored bread. Hey, look! I see, this is the first
time I’ve seen bread that isn’t just white bread. – [Luci] It’s rye bread, doesn’t look like rye bread.
– That’s, no. That’s exciting. Wait, what’s this? – It’s a sandwich.
– Oh my. With strawberry and cream inside? – [Luci] Yeah. And this one has a egg. – [Annika] How can it not be refrigerated? – [Luci] And this one has tuna mayo. – [Annika] Oh my God, how can these not be refrigerated?
– And this one has egg. – [Luci] They must be very
freshly done every day. – Whoa. I freaking love Japanese supermarkets. Hey, my head’s feelin’ a bit better. – Good. – I guess it was the
magic of the supermarket. – You’ve downgraded one level of glasses. – (laughs) I’m back to the
tinted, migraine glasses. Which didn’t stop my migraine
today, unfortunately. – Unfortunately.
– But they do help. ‘Cause I used to get
these every single day and this is the first migraine I’ve had in quite a few weeks. – Yeah. – Yeah, so, you know,
lookin’ on the bright side. This is not a very common
occurrence anymore. I love just walking around. Aw! Like, oh my gosh, this just. Cute! Night flowers. I Love just walking
around our neighborhood. And just wandering
around different streets, i’ve never been down before. ‘Cause we find just,
really cute, new places. What did you do to my hair
when you massaged my head? What’s happened to it?
(Luci laughs) It’s gone so weird. Hey, Luci. – Yes?
(Luci laughs) Beautiful. Aw, that’s so nice. – [Annika] This is my snack haul, excluding a parfait. A mango parfait I have for dessert. We have cheese fries, grapes, grape jelly? Sweet potato and pumpkin chips and your girl needed some chocolate. I just fricking love
this shy, bashful chef. (Annika laughs) These cheese fries are real good. – So it’s just like
cheese flavored cardboard. ♪ Bum bum ♪ ♪ Bum bum bum bum bum bum ♪ ♪ Bum bum bum ♪
– Frickin’ love you. How is it cooking with a one-burner stove? – [Luci] Hard! – You’re doing very well. (foreign language) Was this exactly what I would’ve done had I not been filming? Who knows? It was the pressure of
having the camera on me, did it change what I did with the day? I’ll never know. – Mmm. Cloink! Cloink! (foreign language) Kampai! – I love you. – I love you. (upbeat electronic music) – This is actually Annika
from a few days in the future. I’m cheating. But I was so very close to finishing this wrap top. And I thought you all might wanna see how it turned out. This is prototype number one. I wanna change some things
in the next version. The armholes are a little too tight. And I wanna make the sleeves
even more drapey and flowy. But it is a wearable first attempt. And I think it turned out really well. Okay, back to the past. (Annika imitates magical chimes) (magical chimes) Do I still have panda eyes? – No, you don’t. You don’t have, I was about to
say, you don’t have any eyes. (both laugh) You have–
– Blah! – You have eyes. – So, it’s the end of the day. Well, I’m about to upload a video. So, almost the end of the day. But, – Work work work work,
– Now– (Annika sighs)
– Work work work. – Now that it is, y’know,
nearly the end of the night and my migraine has kind
of gone away, finally. And I can be switched on again, – Mmm. – I just wanted to talk about something that we often do when one of
us has had a really hard day. I think this is something
that is really useful if you also have a chronic illness or if you’re just struggling
– We usually do it when– – With, y’know, bad mental health. Or just feeling low. – We usually do it when
we’re lying in bed at night. – Yeah, so this usually happens when I’m lying in bed at night. But I don’t wanna film us then. (Annika laughs) – Too intimate. – And obviously, we
sleep in different beds, because we’re not married. – Obviously, we sleep in separate beds, and if we sleep in the same bed, we use an 18th-century bundling board to make sure we don’t accidentally touch during the night. – Anyway, what we do is, we
just will tell each other– – We take turns going through and saying our five favorite
things from the day. And they can be the
smallest possible things. – So like, it often, if
I had a really bad day and I’m feeling really low, it can be really hard to start off. But I’ll just think of something like, for example, I got out of bed today. Or something that I did
today that I’m proud of that was a happy memory is, I took a really nice
photo of some flowers. – Yeah. It can be something as small as that. – And once you start,
you actually usually find that you can think of five,
often we will just lose count. – You just start to get on a roll. – Yeah.
– Okay, let’s do one each, as an example. – Oh, I’ve already done some. Okay, what’s another one? I had a really nice dinner
made by my love, Luciano. And it was really yummy. And it made me feel a lot better. – I really enjoyed
listening to the new episode of my favorite podcast while
I cleaned up the house. – Cool!
– It was nice and relaxing. – Yeah, you were just chuckling away too. – Oh, it was very funny. – I liked seeing you
just laughing to yourself like a madman. – See, and once you get it started, – Yeah.
– Then you get a good roll on.
(Annika laughs) – So, that’s just a little, I think, something that can really help. Help to calm you down
at the end of the day. – Mhm. – To stop your brain from
thinking about the future and all the things you have
– Mhm. – to do tomorrow. So, that’s our little tip from us to you. Now, I have to go and
upload a YouTube video. And then I can finally go to bed. – And I go to bed, good night. (Annika laughs)
Mmm, bleh. – The reason I got up
so late this morning is because I stayed up late so that I can upload videos when the rest of the world is awake. Because we live in a time zone that not that many people live in. (Luci sighs)
– Yeah, thanks, America. – Thanks America.
– Can you all just switch over to getting up in the middle of the night? (both laugh) – Be a lot easier for me. – So then we could wake up at
a normal time in the morning. (Annika laughs) – My computer screen is v orange ’cause migraines, it really helps. The program is called f.lux. Honestly, any time I see a computer screen that’s just on normal now, I’m like ugh! Can’t deal with it. (upbeat music) Well, it is the end of the day, which means, it is the end of the vlog. As usual, now that I have to go to bed, I have heaps of energy. Which has been, how it’s been
going for me lately, ugh! Anyway, I’m gonna hop in bed, read a book. I hope you enjoyed this video. And I will see you all in the next one. Stay crafty, everyone. Say good night. – Good nighyaaaaana! – [Annika] That’s terrifying. Say good night nicely. – (laughs) Good night nicely! – (laughs) What a joker. Thank you so much to the
600 Patreon supporters, the superhuman producers
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Translator: David Goldovt-Ryzhenkov
Reviewer: Tanya Cushman In December of 1998,
after just having turned 40 years old, I started experiencing
a strange numbness in my right leg, and I didn’t think much of it. Until about a week later,
I was at a rehearsal, and I stepped off the riser
onto the stage, and my right leg collapsed from under me. At this point, I saw two doctors, and they both thought
it’s probably just a pinched nerve. Nothing to worry about. Good. Two months later, I started to lose
peripheral vision in my left eye, which was now a worrisome situation, and I saw my very first neurologist, and he examined me and said,
“You have MS,” and I didn’t want to hear this. My only knowledge of multiple sclerosis was the great British cellist
Jacqueline du Pré, who was forced to stop playing
at the age of 26 and later died from complications
of the disease at 42. So you could imagine, a professional cellist being told
I have this debilitating disease. Denial was a river in Egypt. (Laughter) I was not willing to accept this, and then four months later, I started losing peripheral
vision in my right eye, which was really scary because my left eye
had never recovered completely. In about one week after that, I came down
with what I thought was a stomach bug, but it didn’t go away. It turned out to be a prolonged period
of something like motion sickness. I wound up vomiting. Couldn’t keep food
or water down for a week, and I wound up in the hospital
for severe dehydration. I was released from the hospital
four days later, and I was unable to move my hands. I could no longer play the cello. I could hardly walk. I was incontinent. My entire body felt like
I was receiving electrical current. I was hearing helicopters all the time, and I saw my neuro-ophthalmologist, whom I had been seeing
for the previous six months, and he gave me a basic vision test, and I was unable to see
even the largest letters on the chart, and he proceeded then
with the visual field test where you’re given a clicker and you click every time
you see a light flash in the periphery. I sat there completely frozen.
Not one click; I couldn’t see a thing. He changed to the other eye.
I sat there; once again, no clicking. He stopped the test, and he said
the words I’ll never forget: “I’ll write you a note
for permanent disability.” Whoa. This was just insane. I don’t know what happened at this point,
but something went through me, and I told him “You can take that note
and you can use it as a suppository,” (Laughter) because I’m going
back to work in six weeks when the orchestra season starts. (Applause) I said, “I’m going back to work in six weeks
when the orchestra season starts.” And he said, “How
are you going to do that?” He didn’t believe
it was possible, but I did. So what do I do? I have this – I’m completely taken out, my central nervous system is up in smoke. I can’t do anything. There’s a story of a tractor trailer
that gets stuck under an overpass. Structural engineers
are brought to the scene. How do they raise the overpass? Dig grooves into the pavement
under the wheels? A six-year-old boy comes along
on his bicycle and says, “Hey Mister! Why don’t you
just let the air out of the tires?” (Laughter) So, we were all six years old once, but we lose that over time
and with education. So I said to that six-year-old boy
inside me, “I need your help. You’ve got to show me how to let the air
out of the tires of this disease.” So, together, we started
looking for obvious things that were overlooked by the experts, and the first thing I found
was the “water cure.” I started drinking half my body weight
in ounces of water a day. I noticed my first signs of improvement. I looked at other things. I looked at MS rates around the world and noticed that your very poorest nations have rates of MS that are about one-third of your wealthy,
affluent, industrialized nations. I looked at Japan, having been there, with its environmental
and overcrowding issues – very low rates of MS. I saw the Okinawa Centenarian study: over 900 people that were looked at over the age of 100 and in perfect health. So I began to believe
that our wealthy, lavish lifestyle has some link with higher rates
of multiple sclerosis. I also looked at something called
“the placebo effect.” And this is where
the six-year-old boy helped. If you look at clinical trials, where you get people who inexplicably
improve in the placebo group, it’s written off as an anomaly
by the experts. The six-year-old boy said,
“Something is happening here.” So I started learning the placebo effect by meditating two 30-minute sessions a day that the MS was going into remission
and leaving my body completely. One of the other things –
I used experiences all through my life, and I was once on a backpacking trip, not far from here
in Shenandoah National Park, and after three days in the woods,
I came out at a visitor’s center, and I saw a big sign
with a beautiful picture of a deer, and it said, “Do not feed the deer. When you feed a deer human food,
such as chips and candy, you reduce its lifespan by 30%. So, I’m thinking, (Laughter) I’m going to be as healthy as this deer, so I basically adopted the deer’s diet. A deer drinks water, eats vegetation,
probably some insects – I passed on that one but … (Laughter) Another thing I started to do was I looked at people
who accomplished the impossible. How do they do this? Your most basic example is in 1954, the first person to run a mile
in under four minutes was Roger Bannister. Prior to that, people said, “It’s impossible!
Human body can never do it.” He does it. It’s now an achievable goal. The baseball pitcher Nolan Ryan, who threw his 7th no-hitter
at the age of 44, and in that game, throwing the ball
96 miles per hour. He staved off the aging process
of the human body for 25 years. So I’ve adopted his lifestyle: every
morning I begin with yoga, stretching, weight lifting, you name it, cycling. I live a very disciplined lifestyle. In 2013, I had the privilege of meeting someone
who accomplished the impossible, and that was Nando Parrado, who survived the famous plane crash
in 1972 in the Andes mountains. And when the plane crashed in the winter,
high up in the mountains, Nando was thrown from row nine
into the bulkhead. His skull was fractured in four places. He was given up for dead and placed
in the cold with the bodies. Three days later, he awoke from a coma, and 72 days after the crash, Nando showed up
in the foothills and got help. This man has gone 37 1/2 miles through one of the most difficult
mountain ranges in the world in the winter. He had never seen snow,
he had no survival training, no gloves, no boots,
no equipment and no food. His only source of food was the people
who had perished in the crash. Mountain climbing teams
that reconstructed his route said what this man did was not possible. So I met him, and I said to him, “I always wanted to meet you
and thank you because you were one of my guides when I was finished. I’m not supposed to be here.” And he said, “I’m not supposed to be here either.” And when this giant gave me a hug,
something went through me. I felt like for the first time I had cured
myself of this incurable disease. And I went back to my neurologist, whom I hadn’t seen for 11 years, and he did a complete series of MRIs again
on my brain and spinal chord. In 1999, my brain
had over 50 active lesions, and my spinal chord had one
that was 3 1/2 centimeters in length. And I worked so hard at my recovery, and true to my word, I went back to work in six weeks
when the orchestra season started. Wasn’t easy, but I kept going,
never missed work. I missed five weeks of work
that year when I was hospitalized. So in 2013, I had
a complete series of MRIs done. When my neurologist looked
at the results, he said to me, “You did the impossible.” Because there were no more lesions and no traces of the disease
anymore, whatsoever. So, I was so taken out in 1999, but I worked hard,
and everything came back. I got the use of my legs back,
I got the use of my eyesight back, I now make it to the bathroom
when I need to go. I don’t hear helicopters anymore, and I don’t feel like I’m receiving
electrical current anymore, but the most important thing,
I’ve gotten the use of my hands back. (Applause) (Cello music) (Music: “Danny Boy”) (Music ends) (Applause)