Immune deficiency, or immuno-compromised individuals, are those whose immune systems are incapable of working at full capacity, causing a reduced ability to fight infections and other diseases. An estimated 3.6 percent of Americans are immuno-compromised which may be present at birth but is commonly developed later in life as a result of blood and bone marrow disorders, medicines, cancer, cancer treatment and many other factors. But what about the immunocompromised currently quarantined during the coronavirus pandemic? My name is Anthony Padilla and today I'm gonna be remotely sitting down with quarantined immunocompromised to learn what it's like to exist in a world in which coronavirus runs rampant and seriously threatens their health. Is remaining quarantined simply an act of overzealous caution, or is the constant fear of contracting this virus that's infected well over a million people constantly tormenting them, causing them to live in a perpetual state of insurmountable dread? Anthony: Hello Jessica.
Jessica: Hi, nice to meet you. Anthony: Walela.
Walela: Hi. Anthony: Zach.
Zach: Hey Anthony. How's it goin'? A: Thank you so much for coming out and teaching me a little bit about the wondrous world of living with immuno-deficiencies during the quarantine. Z: What a wondrous world indeed.
A: Right, yeah. Maybe not the most appropriate word today. A: What do you consider yourself? An immuno-compromised individual? Immuno-deficient? W: I consider myself immune compromised and disabled. Z: I'm immuno-suppressed. I take a medicine to fight that disease and the way that it works is it suppresses my immune system. J: I would always call myself a disabled person. I don't think I would define my immune system as my number one thing that's wrong with me. A: Right. That's just one aspect.
J: Really annoying part that you have to live with. A: What does being immuno-compromised entail? W: In general, it just means that we have a higher risk of becoming sick compared to the rest of the population. J: Avoiding people who have a bit of a sniffle. I have a carer who comes in and, if she's feeling unwell, if she gets a cold, normally she just won't come in. Which means that nowadays we have to be really far apart. A: How exactly are you specifically immuno-compromised? W: In 2017 I was diagnosed with advanced stage leukemia, and pretty much leukemia and cancer in general suppresses your immune system, and then I take an oral chemotherapy every single day and that suppresses my immune system. Z: I have a autoimmune disease called ankylosing spondylitis. Z: Do you wanna try saying that?
A: Anklelidis spontilinus Z: You nailed it.
A: I'm just gonna give a round of applause to myself Cause why not? Cause I nailed it. Z: Basically my body... attacks itself. It thinks that my cartilage is a foreign invader. It eats it away and then replaces it with more bone. So the medicine has to tell the body, "Hey, stop developing antibodies." Antibodies when they're out of control... bad. But antibodies are really important. Those are the things that fight infection, and disease, and... viruses. J: So I have a genetic disability called hereditary neuropathy with liability to pressure palsies. A: So it just rolls off the tongue. J: I'm very good at this. There are more to come, you'll see. So hereditary neuropathy with liability to pressure palsies. Which means that the myelin sheath, which protects your nerves kind of like the plastic coating on electrical wire, mine has holes in it which means that the nerves underneath are very liable to be damaged, they're very easy to fray, they can paralyze. And then I also have Ehlers-Danlos Syndrome, and I have a thing called mixed connective tissue disorder which is an immune... disorder. It's whole thing. I'm a lot of stuff in one little package. A: When did you first realize that you were immuno-compromised? J: So many small things from being really young and my body not reacting the way other people's did. So it would be, I would fall over in the playground at the same time as my friend fell over and the pain for me would be excruciating and unbearable and I'd be screaming and crying and my friend would be like "Oh... I grazed myself." A: What was your reaction like when you realized that you were immuno-compromised? J: Being told, "Oh, yeah, there is actually something wrong with you" is such a feeling of relief because you're like oh, you know, it wasn't, it wasn't just me. A: You probably, for a large portion of your life you're probably like "am I crazy? is everyone feeling the same things that I'm feeling, but I just have a bigger reaction?" J: Yeah W: I think the biggest thing was I felt ashamed and I had to actually really interrogate why I felt ashamed and it was because I couldn't work anymore. I was doing a lot of work in like customer service and like retail and I couldn't do a lot of what I used to do, which meant that I couldn't contribute to my household. And so I was like well, why is my labor inherently tied to like my worth? A: It's true. Our society has taught us from a very young age, straight out of the womb, that we are as important as how much we can contribute to society and the way that we are told we contribute is by working.
W: Yeah. A: Do you proudly tell people that your immuno-compromise or is that something that you like to keep more as a secret? Z: I wouldn't say it's something that I'm proud of, but I have a YouTube channel, I have a platform and so I've felt somewhat of a responsibility, but also mostly an opportunity to talk about what I'm going through because I know that there are people out there who have it way worse than me, way harder than me, and they don't have that voice, they don't have that platform to share. And so I found it a really powerful thing to talk about my experience. W: I think a lot of people who are disabled and a lot of people who are immune compromised are purposely kind of pushed into the shadows and not really meant to be seen and um considered ugly, considered useless, considered disposable. J: I didn't keep any part of myself secret. A: *laughs* Good J: I don't see the purpose. A: How difficult is it for you to explain immunodeficiencies to someone who has no understanding? W: It depends on how willing they are to understand. A: Yeah, I guess it goes without saying for everything in life, actually. W: Somebody who is really hell-bent on not understanding what it is and just really wants to commit to these [static] up notions of what disability and immune compromised, you know being immune compromised is, like I'm not going to get through to them. A: How do you feel people without immuno-deficiency should interact with those who do have immuno-deficiencies? W: You don't know who has what. And so you just have to work off the assumption that you are going to be around somebody who is immune compromised or who has a disability where their underlying condition, you know affects their health and um act accordingly. A: How are you handling the current pandemic?
J: I'm following the path of extreme isolation. So trying not to come into contact with anyone really except my wife. Z: I'm staying inside. My girlfriend is, you know, doing all the shopping, but then is disinfecting herself and showering as soon as she gets home. A: Just throwing her body in bleach.
Z: Yeah, yeah. Yeah, we have a bathtub, actually, that's just constant bleach.
A: The tub of bleach. You know? Z: The first couple layers of skin right off.
A: You didn't need them anyway, it grows back. Z: Yeah, yeah. A: How do you feel about the way the government is handling this pandemic? J: I'm really pleased that the British Government have changed their mind on what their original plan was, which was herd immunity. Their original idea was just to try and isolate the elderly people and isolate people who had underlying health conditions and let the virus move between everyone else until at least 60% of people had got it because that's apparently the magic number for herd immunity. Which is just not-not a great idea. W: Part of it, I think the government was undermining the uh severity of the virus. How quickly it could spread. I think that hospitals unfortunately were super under-resourced which has been forcing a lot of doctors and uh ERs and ICUs and even nurses to make really messed-up decisions of like whose life is ahead of who. Z: They are talking about a quarter of a million people dying as a success story. A: Yeah, they're saying that's on the low end. Z: That is atrocious. That is disgusting. It is- it's, you know, it's genocide by negligence. A: Even if the economy comes first, to some people, that would destroy us in so many other ways because our hospitals will be even more overrun than they already are. Z: Our trust in the world as a safe place will be shattered and the duration for which this will continue will extend way beyond what it could otherwise. A: Do you feel like people with immuno-deficiencies are being overlooked? J: Everyone with a health condition or even elderly people are being massively overlooked. Talked about as if it's fine, we're just, you know, all collateral damage. A: Yeah. So many people are just othering you and so many different types of people because they're like "Oh that doesn't pertain to me. So there that's just for them to deal with." J: People just aren't seeming to take personal responsibility. They aren't realizing that, yes, to them, this virus may not be a big deal, but you could be a carrier, you can be an asymptomatic carrier. You have no idea you even have the virus and then you pass it on to someone who has a compromised immune system, someone who's fighting other health problems, someone who's older, and it's a massive problem for them. A: How do you feel about people having coronavirus parties? Z: Uh, yeah, um [static] you. That is the stupidest thing you could ever [static] do. Have a coronavirus party through FaceTime. The coronavirus party is you're literally saying ''hey, you guys want to incubate a disease?'' W: I understand the need for connection and I can empathize with why people are doing this but at the same time, um It's just unacceptable to put that many people at risk. A: It's not just you and the people in the room immediately with you if you contract it, there's a two-week incubation period so you could be getting everyone in the supermarket sick as well. W: Yeah, just because you're a carrier with no symptoms it doesn't mean you can't deeply affect somebody else and possibly even, you know, kill them. A: Before we learn more about the wondrous world of living with immuno-deficiency during the quarantine, I just want to take a quick moment to say we received hundreds of video submissions and multiple thousands of comments about this specific video topic and it was really difficult to choose the guest for today because it's clear immuno-deficiency affects so many of you in one way or another and I- I just want to say I truly appreciate that so many of you trust me in representing you and your struggles accurately. And on a completely separate note, I'm hoping that this video will draw more concern about the severity of the coronavirus pandemic and how it can affect everyone. Even those who at first glance may appear to stand no risk. I'll be donating 100% of the profits from this video to Seed Global Health, a nonprofit that invests in the very needed training of health professionals and struggling developing nations to ensure they're taking precautions to prevent the spread of the virus. Their founder, Dr. Vanessa Kerry is currently working on the front line at a hospital in Boston. I feel like I can speak for everyone when I say we're immensely grateful for you and everyone else in helping, and to everyone at home practicing social distancing and taking this quarantine seriously; seriously, thank you so much for being an unsung hero of sorts and ensuring we make it through this as painlessly as possible for your health and for everyone around you. It's tough now, but if we all take this as seriously as possible, I truly believe we'll make it to the other side of this and be stronger as a society than ever before. That's all I wanted to say now back to learning about the wondrous world of living with immuno-deficiencies during the quarantine. A: Andy1and wants to know if there's anything you wish you could say to people who are saying "it's just the flu" and they're not taking it seriously. J: People don't need to die. I don't think that we should be so light-hearted about people dying whether it's from the flu or from the coronavirus. A: Yeah, many people see these numbers and they're like, oh it's less deaths than a flu in a year so it's nothing to worry about. Z: I don't understand how we got to this point where disinformation is- is spread so enthusiastically and--and science has become opinion? I don't know anything more than any other person except for the fact that I listen to scientists. I listen, I--I There's data that is available, We're not making this up. A: Maya Kay wants to know how you feel about the discussion that people Want to go back to work and are willing to potentially die for their economy. J: I personally think it's a really short-sighted view because, yes, your economy may You know, do a little better for a few weeks But then you're gonna have a massive pandemic. of very ill people who've caught this because they had to go back to work and then your economy is just going to slump again. Z: The economic turmoil from this is Absolutely real is absolutely heartbreaking and it is terrible. But if we spread this out Studies show it is going to be a lot worse. If we can band together and take care of this now in the immediate We're gonna be able to get back to work. We're all going to be able to get back to life as normal But if we don't if this just continues to pop up over the country We're gonna be in this pattern for the next 12 to 18 months while we wait for a vaccine. W: A lot of people want to go back to work Not only just for the economy But just so that they can feed themselves and pay their bills and pay rent because a lot of these moratoriums aren't doing [static] We still have to pay bills and a lot of us aren't working, unemployment is at skyrocket rates and so my question is like, why do we have to work to get our basic needs met? And why would some--why would we have to go put ourselves in these situations like working in the middle of a [static] coronavirus pandemic in order to just get our basic necessities met, when we have enough money to do that? And so I think I would like challenge that element a bit more. A: Surat Varanasi wants to know how careful you had to be before COVID-19 and How that's changed since the outbreak J: Maybe looking back, I wasn't always as careful as I should have been And this has kind of brought that into focus. I would be like, "Oh, yeah, it's fine I know you've got a bit of a sniffle, but it's it's you know "We'll see each other" and then I'd get ill and be in bed for a week. But now it's a far more serious. "Oh, um, You're feeling not too great. Wonderful. Don't come near me for three months" A: You have, you know your boundaries now, you know your limits J; Yeah It's even if I knew my limits before I would still stretch them in order to have fun or work but now I'm just Absolutely not. W:I mean to be really transparent like being black too and wearing a mask and you go into a store You're gonna get followed around. A: Oh because people think you're trying to protect like Protect your identity and steal stuff. W: Yeah and you're wearing gloves. And like I always wear like a sweatshirt sometimes or a bandanna Or whatever but like to me I'm like I look completely regular and like to them like, you know They're like frantically like, you know waiting to press like the sheriff button underneath the register. A: You're getting racially profiled as a criminal because you're trying to be safe and not die W: Yeah Z: My life now is is night and day. I--I'm essentially a glorified shut-in. I am Genuinely afraid of people when I see them on the street, I am afraid to touch the handrails in my apartment building um... And I'm both afraid to like- Also when I see elderly people, I'm just terrified that I'm carrying it and I don't even know. A: You're not just afraid for yourself But everyone around you Z: And it results in this constant state of paranoia But then doubting my paranoia and being like ''I'm being stupid wait, I'm not being cautious enough Should I have not gone for a walk without a face mask? What do I do?'' And then I've been having some crazy Anxiety dreams. A: I'm sure everyone's having right now and especially someone in your position Z: All my nightmares, I'm not kidding I've had this nightmare twice this past week. I'm just in a store and then 30 people come in And I can't stay six feet away. That is like my genuine nightmare right now. A: I like how it sounds like you're describing some type of zombie Situation, but it's literally just normal people. Z:They're just trying to get a sandwich A: *laughs* A: Parris Miller wants to know how you're handling the threat of running out of essentials. J: We've tried online shopping but the issue is that all of the supermarkets have run out of slots because of over demand people who Should recognize that they are at less risk Aren't going to their local shop they're instead shopping online Which it should really be prioritized for people who cannot go to a shop who do not have the option who need to be staying at home quarantining. W: I started a Google Doc for immunocompromised people in need where they list in each state and county what they need like because a lot of Disinfectant products people are hoarding them and so people who actually need them aren't getting it and I had experienced that myself And so I was like, well if I experienced it, somebody else did and these people will connect and people will be delivering gloves, Disinfectant products, food even to people A: Are there any important things you've learned about yourself while experiencing immunodeficiencies? Z: Life itself is a gift. It's not a given. The chances of you being here are so infinitesimally small and One day it's gonna be over so Enjoy every single moment that you have You get one go at this A: Has having immunodeficiencies affected any of your relationships J: When I was a teenager it was, you know I couldn't go to every party and if you say no to two parties in a row you don't get asked to the third and I definitely lost a lot of friends along the way from people who just Weren't able to-through no fault to their own, obviously. They were teenagers or university students who Weren't able to adapt to that. W: Sometimes people just get really impatient with the fact that like, immunocompromised people do require a lot of care and um so I've experienced that and that obviously makes me feel neglected and abandoned. A: It really does seem like those who are deserving of your love and affection are the ones that end up staying around it. Just kind of is synonymous in that sense W: Yeah, I mean in many ways, like that, it, my disability and being immune compromised completely made my circle very solid. A: What's one thing you wish you could say to anyone watching who is immunocompromised and feeling immense fear in these uncertain times? J: You are a valid, special, wonderful human being who very much deserves to be on this earth and other people need to take precautions to make sure that you stay here. W: There are many people out there who care about you who are out here trying to protect your rights. and your livelihood, and who are trying to be a voice so that we can get the best care possible. And, in many ways, there's strength in numbers and there are way more immune compromised, immune-deficient people than we would have thought. You know that we can imagine the percentage is super high, so you're not alone. The population is big, and I got love for you. A: What kind of long-term effects do you think this pandemic and this quarantine will have on society? W: Ooh... A: *chuckles* Just a nice, shallow question for you there. W: *laughs* A: Keep it lighthearted
W: that's like a dissertation! W: We're never going to be able to go back after this. A: Yeah- W: We, and, and honestly before this there was a ton of bull[static] too - I think we're gonna see a lot more organized efforts to have better policies, and to have more people who represent the people, like people in office and politicians, uh but, more importantly, like just seeing a lot of just, community stuff organized to take care of themselves and not rely on the government as much, because it's failed us. A: What's the first thing you're gonna do when this Pandemic is over and quarantine is lifted, and you feel 100% safe to return to a normal life? Z: I miss eating out, you know, like I miss I miss going out to dinner. We have so many great restaurants in LA , and I hope that they can survive this. J: Oh, going to a super market Never realized how much I liked doing that A: Just walk in look at the produce like a deep breath... Yes. J: Just be in a crowd of people A: just stand and observe people. J: Yeah, I mean they still shouldn't cough on me, because I won't take it very well... But- W: imma go to El Chollo, eat some mexican food! like, I'm real simple too, I'm really boring I just like to go out to restaurants, I like to watch a movie here and there Yeah but it's the it's the simple things. What do you think the biggest misconception about immunocompromised people is? J: That we're weak That our health is all that we are That we don't have so many other wonderful, amazing facets of ourselves Z: I think the biggest misconceptions are that They're exclusively old or that [static] 'em they should just stay inside and it's their problem. W: People want us to perform being immune compromised. "If you are so immunocompromised, Why don't you look sick?" and I'm like, "Well, what does sickness look like? What does disability look like?" I mean everything looks different on everybody, I mean If you look at my list of cancer patient friends, we all look different. We got people who don't have hair We got people who are on chemo and do have hair we got- and I think that just shows that there's this lack of understanding And education that's been happening about disability and about disability justice and about immunocompromised people I actually have a parting gift for you: a 'best interviewer shirt'. (Z: oh wow!) You know, You could get at padildoshop.com, but for you I will ship this to you for free, in hopes that you know... You will take the proper precautions, in opening the package in a safe location, and washing your hands appropriately before... putting it on this beautiful shirt.
Z: I will wash it three times A: Good! And you will sing the thong song frontwards and backwards before you're done. Z: Every word!
A: Good as you should. Z: You know, look you have a lot of time on your hands There are worse ways to spend it. A: Than subscribing to Anthony Padilla?
Z: Yeah, it's not the worst decision. You could make. A: There you go. You heard it from Zach himself Not the worst decision you could make... Alright, you got five seconds to shout-out or promote anything you want directly into camera, go. You can follow me on Instagram and Twitter, @itswalela. W: I am looking for a stem cell donor for a life-saving bone marrow transplant, and you can register with 'bethematch' today J: If you're interested in learning more about how a life with disabilities and chronic illness can still be fun and fabulous Then subscribe to me on Youtube, at Jessica Kellgren-Fozard. Z: Listen to scientists... A: Yes!
Z: And wash your hands. A: Thank you so much, Jessica, I feel like I understand the wondrous world of living with immunodeficiencies during this quarantine just a little bit more J: Thank you so much for taking the time to amplify our voices A: After spending the day with these immunocompromised individuals I've come to understand that while these tumultuous and uncertain times are scary for everyone This pandemic may be grounds for causing Exponentially more concern, for those whose immune systems are compromised Although it may be easier to assume we're safe if we're young and healthy We should consider how our actions could impact those whose immune systems are less likely to fair well when put up against illnesses and viruses like COVID-19. Please for the safety of yourself and everyone around you Practice social distancing and stay home unless absolutely necessary See you later, bye guys.
W: Press a like! Z: Yeah, I found out a couple years ago that I was not washing my hands properly throughout all my childhood A: Wait, how are you washing? Z: ...Look you go. You if you're just peeing, you go "Okay. Look, I'm good. " A: Yeah
Z: I'm not the only one. A: No, I definitely done this. Here's washing your hands, to me. Z: And then you wipe them on your dirty pants... A: Right, right, and then you pick up your dirty cellphone.
Z: Yeah, oh, of course
