Cinzia Bishop and Chiara Moore

00:02 Okay, I am cinzia Bishop. I am 28 years old. Today is March Friday, March 5th 2021. I am recording in Boston Massachusetts. My recording partner today is Chiara Moore and she is my sister.

00:19 So I'm here more I am 30. JJ is March 5th. I am recording from Norfolk, Massachusetts. And cinzia. Bishop is my recording partner and she is my sister.

00:33 So I'm so glad that you could join me today and we can have this little conversation. Just wanted to kind of Dig Inn and dive into my story and my experience of living with multiple sclerosis. So as you know in July of 2016, it was another really hot sticky New England summer and I woke up one morning everything up until this point had been completely normal. I had just graduated from college. I recently got engaged to my high-school sweetheart. I had landed what I thought at the time was my dream job and everything seemed to be going really well until that morning and I woke up and I walked outside and I noticed that there were two of Johnny sitting on the couch.

01:24 And that was when I realized that my vision had completely double it didn't really make any sense to me at the time and I had no idea what was going on. I knew that something was very wrong after 2 months 5 doctors three MRIs countless blood work and finally a spinal tap. We were able to confirm that I have relapsing-remitting multiple sclerosis.

01:50 So what did you know about Ms. Before you are diagnosed?

01:55 To be completely honest nothing. I knew one other person who had a mass and their experience has been completely different from mine. So even the information I did was not accurate and honestly completely terrifying based on his experience. I thought that I wasn't going to be able to walk anymore. I thought I was immediately going to become disabled. I thought that the quality of my life was just going to deteriorate. I thought that I was going to be in pain for the rest of my life and those things really scared me and I had no idea really what was coming next and what to expect. I'm also curious to know what did you know about a mess before it was introduced to our family and this Funway really only associated with not being able to walk

02:55 And so on I was abroad when you are going through the whole diagnosis debacle and found out that one of my closest friends abroad actually had a mess as well. And she was one of the most outgoing life of the party people that I've ever met and you're definitely walked and dance like nobody's business. And so I think just like her living life to the fullest and being able to continue traveling and living abroad you need some hope that it wasn't going to be as bad as what my reaction had. Let me to believe

03:35 So what has it been like so far living with MS?

03:42 So far, it's been pretty unpredictable. That's one of the beauties of this disease is that we never know when it's going to strike and exactly what's going to happen next and what happens for one person to the next is completely different. So I've been very fortunate in the fact that overall My Health has been

04:01 Pretty stable and with the help of treatments and medications I am in full remission and have been for over a year now, but they're worse than Siri times where you know between waking up and having double vision for 6 weeks, which I couldn't drive and couldn't live my normal life and then not resolved itself, which was good. But I also you know one morning woke up and couldn't feel any part of my body from my rib cage to my toes on one side of my body and that also lasted weeks on end and it was again terrifying. I remember going to a neurologist. Do you know the damage caused by spinal cord at that time and him looking at me and saying you're lucky you're walking. I'm just being so in shock. I had just gotten married. I was you know, 25 years old. What do you mean? I'm lucky to be walking it was terrifying but like I said with the help of getting on the right medication then I've been very fortunate in that we've been able to keep

05:01 I helped pretty stable and I've been able to focus my attention on not necessarily my health, but on advocating and sharing my story and getting you know the word out and I think you do Share story often and loudly which is great. But what is your motivation for doing that? I think my motivation for doing that is completely from that feeling. I had a complete and total isolation in that moment of receiving my diagnosis and not knowing anybody else going through it and not knowing exactly what was going to happen next and not knowing what to expect where to turn who to talk to. I don't ever want anybody else to feel that way. So I love to share my story. I shout it from the rooftops. I have gotten myself very involved in multiple organizations to be that Advocate that he's at friend's companion that I didn't have.

06:01 That moment on that Darkest Day. I mean you have done a lot through like advocacy organizations and things that I wonder if you are as open about your diagnosis like at work or with new friends and what that's like, yeah. So especially at work, it's definitely a tricky balance to find I threw out my experience with having a mass have had three different situations with disclosing having a disease to employers and you know really deciding whether that was something I wanted to do or not. And what could the possible outcomes of that be? So in one situation and I was working there when I was diagnosed. So, of course I was missing a lot of work for that process and they knew something was going on. So I told them point-blank and you know, they kind of started reeling in my responsibilities and taking things away from me and now

07:01 Build-A-Bear I wasn't I was still me and I was still working and I was still doing my job but you know, you can't blame people for responding and reacting but that didn't scare me. So when I when I left that company and I found a new company I chose not to disclose and the second company was a little bit easier and making that decision. We had great benefits and unlimited PTO time. So I never really had to explain my absence has is a very open door policy just come in and do your job and go as you please so that made my life a little easier and now in my current position and thanks to covet I'm very grateful that I did disclose very early on my employer. They've been great. They work with me. They you know, really been supportive. I have benefits and they've been allowing me to continue working from home throughout the entire pan.

08:01 And so it's really a matter and it's a personal decision of whether or not you want to disclose and when's the right time and how to go about it when it comes to meeting new friends and making making new relationship. I think it depends to on how involved in my life. I see this relationship becoming a friend in transit or somebody that you met. You have a mutual friend with you hit it off, but you're never going to see them again. I'm probably not going to tell you because I really doesn't matter what the people that I hold clothes in my life. And I do tell them I'm very open about my experience and it does change the day-to-day experience with those relationships.

08:49 How how so there are sometimes where you know seemingly I should be able to get up and go with all of my friend that keep up with them and do everything that they're doing in the reality of the situation is one of my biggest sometimes I just can't I can't keep up. I don't have the energy of a normal twenty-eight-year-old. I'm very fortunate that I'm able to get through every day without taking a nap and to be honest. I not very often and that's something that a lot of people just don't understand especially at this stage. Why are you doing I so, you know, it does affect my decisions as to what activities I am going to put myself out there for and I have to really like way how much energy is going to take it and really

09:38 It doesn't change a nose Dynamic. Yeah, that reminds me of when we were planning to go for a bachelorette party. We did a weekend away at the beach and we had we plan to have a house and enough breaks the next two videos that if she needed to nap you get that and not feel bad about it. It was built in down throughout the whole day and I really appreciate that.

10:05 So overall like how has your life been different so far from what you had imagined because of Emma?

10:14 To be completely honest, it really isn't that much different than I would have expected. I can still I still have most of my motor function I can still walk. I I I'm still living a pretty normal life this past year has been understandably restrictive but it has been for everybody. It's not unique to having a mask and overall. You know, really the only thing that's changed is I have to go to the hospital once a month and sit there for a couple of hours. But other than that, there's really no price to pay for it either things that have surprised you so far I would think I think the biggest thing that's to surprise me so far is

10:57 The strength and resilience that I found within myself

11:02 I didn't I never thought of myself as very strong. Like I know that I thought of myself as Weak by any means like I've always been proud that I've been strong and independent and I dunno had great role models in my life to emulate for that, but I just

11:19 I struggle with confidence and I you know struggled with depression and a lot of other mental health issues and and so I never thought of myself as strong and now I proven to myself over the past 456 however, many years has been that I'm strong and I can overcome anything and I can bounce back and it might not be easy and it might not be today and it might not be tomorrow, but I'm going to get back in the fight and I'm going to keep going and I don't think that I knew that I had that that isn't it?

11:56 That makes a lot of sense.

12:01 So you talked a little bit about how scared you were when you got your diagnosis. Can you talk about when you were the most afraid and how exactly you did get through that?

12:12 Yeah, so I was definitely my most afraid during the diagnosis process. I like I said, I had no idea really what to expect what Ms. Was my vision was doubled. Like, why are we looking at my brain? What's going on here? What does this mean? And I remember, you know checking my eyes my eyes were fine. And I remember checking the connection between my eyes and my brain in that was fine. Finally. They scan my brain and they were like, haha. Here's the problem. That was terrifying. Like what do you mean there's something in my brain. I'm just not knowing I'm not having any sense of what's up and what's down and where to go and who to turn to and what's next in what's coming. But what I really found was strengthened numbers, I immediately started looking into you know resources like the national MS Society. They have great resources put you in touch with other

13:12 I started you know really researching what this disease was how it works and and what I could expect potentially and I like I said, it could be crippling and debilitating within three months of diagnosis and you could be perfectly fine for the rest of your life. It's completely different. So I think that I got myself through it really by doing a lot of research and finding out as much information as I could probably information overload, but I also started being bombarded by friends and family who also had no idea I would tell them I have MS and they would just say what does that mean until I had to have the information so that I could also put them at ease. So that was definitely the biggest thing that got me through everything was just really having the strength of the information available, but it sounds like the information was we don't really know what's going to happen for you personally. So, how do you deal with that like uncertainty?

14:10 So I connected with a lot of other patients who have MS as well. There's great communities online and person I started going to advance in person course now that's been shut down for a year, but I'm still attending events online I go to events with people who have MS specifically and I also go to other people who have chronic illnesses disabilities and we all just share our stories and it's very interesting to see even when our diagnoses are completely different how similar all of our stories and experiences are in having to advocate for ourselves and trying to get the best medication in the best health coverage and all of that fun stuff. So it's just really finding those connections and those people was what helped and I really leaned on family and I really leaned on friends for help and support and guidance.

15:10 Through all of that and I'm sure it was terrifying for you guys to mean it was scary and I do think like you've talked about how your life but I think we also need slightly different choices and we would have made without this diagnosis.

15:28 Her definitely has impacted everything and I do think like one when you were going through the diagnosis process just being so far away was really hard to like, how do I support you cross the Atlantic Ocean? And so I think I sent you soup like most I could to hear the dinner. So you have one less thing to worry about but I didn't think being at least closer to you and being able to like when we could go to appointments the other things like that has been really helpful for me to feel like I am doing something to support you through all of it. But so you talked about how you feel this like closeness to with the community in general does your diagnosis like make you feel closer to people or people or

16:21 I think that that is very much dependent on the person that I'm having that relationship with like I said before when when we were talking about like meeting new people and stuff like that. Sometimes it is a deterrent sometimes people just don't have the patience for it sometime people don't know how to respond. Sometimes you get the pity party and nobody really wants to have a pity party thrown for them still who I am and everything is fine, but I can understand people have reservation people have hesitation. So in some ways it does make me feel closer to people the people who have been really supportive who have stepped up to the plate who have shown up out of vents for me who have spread the word who have you know, really driven me to appointments any of it. You know, I I have a great support great support network with amongst my friends and my family so I couldn't be more grateful for that. But I definitely do think that in some senses it can be a deterrent for

17:21 Having relationships with people and it definitely can make you feel isolated. Sometimes I still have those days where I feel like nobody understands and nobody gets it. I can't get out of bed today and like Mom doesn't get them and she's like, why are you still in your pjs? It's 5 p.m. Well Mom struggling today and so is 10 year old still have that isolating feeling to it.

17:48 No, definitely. Do you look at your life differently now than before you were diagnosed. There are definitely things that I have to consider now that I never probably would have had to consider without my diagnosis. So talking specifically about a couple of things. I'm now looking at buying my first home in my wildest dreams. I never really had a vision of what my first home would look like or what needed to be where and you know, it was just going to happen. We were going to find a house we liked and it was going to be okay, but now I'm sitting here like, okay. Well if this ends up being our forever home, I'd need that a bedroom on the first floor in case I can't do stairs one day it needs to have wide hallway is an easy entrance and exit and all of that to it really does shape a lot of the decisions I make you know, whether I'm going to accept a job at a company whether I'm going to make that move to the next cuz

18:48 And whether I'm going to move across the country in my entire care team is here. All of my support of my friends my family my doctor's like any of those decisions when it comes to traveling scheduling them around my treatment. It's just a lot of little but big impact definitely change the way that I look at decision-making probably more than that. I will get my wife and I were looking for our first house.

19:22 We wanted to at least have the option of being a safety net for you. If you ever needed it as moms across the country. And so like one of the things that we were looking for is a house that had like an in-law suite our space that could be turned into an in-law suite and I mean we tested it out during a moved in for a couple of months, but I do think like when you're talkin about it impacting all of your decisions, it impacted our decisions as well. I'm just making sure that we could show up for you if you ever needed it. I also thought it was just the sweetest. I remember when Chris so Chris is my brother-in-law and he's amazing and I remember when he was graduating from MIT. He was getting his Doctorate World very proud of him and he was looking for his first full-time position and he's a researcher.

20:15 Biochemist and you know, so he has all these different Avenues and options available to him and all these different places in the country. He can go all these different universities prestigious organization. There's all these great biotech firms right here in Cambridge, Massachusetts, but there was no guarantee that's where he wanted to do and even him when we were talking about the interview process has he would describe the companies he was interviewing with and he be like, oh, yeah. And by the way, they could use this technology to help with Ms. One day. Oh, yeah. And by the way, this company that I just interviewed with is developing Ms. Drugs, and I was like, wow, I never have I've always known it impacted my life. And I think that was the first time that my eyes were really opened up to the fact that it's impacted all of our lives in that decision making bubble.

21:12 I know. No, definitely. I think it's one of those things but like you don't have to think about until you have to think about it and then it does end up being baked into so much of what you do.

21:25 So thinking more broadly who has had the biggest influence on your life. And what lessons did they teach you?

21:35 So I have two people and that would be mom and yourself. The two of you are both extremely strong independent women mom. Basically Brazzers on her own. She brought us over here from South Africa. She you know built the lives that we have and our future is for us and has really provided us with all of these amazing opportunities, and I just

22:03 I don't know if I would be able to do that. I mean again speaking back to I didn't realize how strong I was. I probably could but I got a lot of my strength from Mom and from watching her at leading by example and from you as well. I mean, it wasn't an easy decision for you to make sure to leave the country for 2 years and you know, we both went through some of the hardest times of Our Lives during not separated. And it wasn't easy but you made it look easy and you know, you did little things that were so thoughtful like sending me soup like you didn't do that, but it was it was like getting a hug from across the ocean and just knowing that you were thinking about me and that that all of that was going on. Like I don't know if you or Mom realize how impactful the examples that you have really set for me have been and in shaping who I am today.

23:01 Images of level up my big sister Saturday. Thank you. Try not to let my ego get to Big there. But so thank you. What does your future hold? How do you build from where you are? So, you know just really leaning into the examples that have been set for me. I really see myself being an advocate tirelessly being strong in that advocacy in my diagnosis and my journey with this disease being as independent as possible for as long as possible. You know me. I don't like I don't like things being done for me, except they're like everything being done for me just be honest. I don't ask me to cook don't ask me to clean but I still want to be able to live my life and enjoy it and get out there and I'm going to continue to do that again, you know the example that you and Mom has stopped for me by overcoming every August

24:01 Continuously running even on your worst day is just getting up and continue and fighting and persevering through all of it. And that's all that I can help for for. My teacher is that I can do the same for myself and for my future family and my future children and whatever my future may hold.

24:21 Speaking of getting back out there. So you had your first vaccination different. How how much are you looking forward to the second dose? And like how do you see that changing your day today living in Cove Atlantis like we do so it's like we're very it's a double-edged sword to be completely honest. I'm really looking forward to being able to leave my 500 square-foot apartment on more than once a week, but he says it has not been fun. It has not been enjoyable. It's been very isolating since I'm like and how here we go. Let's do it. And then at the same time, I'm like baby stuff like I want to dip my toe and like one thing at a time. I went to book club yesterday. There were six girl. That was great small very intimate setting and I still felt really anxious when I came home and I was like, no it's not safe out there and I don't know how long

25:21 I feel like that so it's definitely like super exciting and at the same time like super anxiety-filled because everything that we thought was safe before all of a sudden and now it's weird to reconcile that maybe some of it is again.

25:40 How do you feel about the world's reopening since you're in the public health space?

25:48 Oh, I mean I think from a public health perspective. We want to keep everyone safe for the best way to do that is to keep everything closed but I like also definitely feel that itch till I get back out there. I have the travel bug like you will not believe and so am dying to be able to travel again but like trying to balance out with when it safe to be out and about here as well as they should be out and about at whatever destination and Enzo just because like Chris now has been fully vaccinated. I'm not eligible yet. But one side you get back to me and it just because you personally are vaccinated doesn't and like you can't you can still get it and you can still spread it and so just making sure that like if we do travel somewhere or not putting other people at risk as well.

26:37 And I have to be completely honest indoor dining still terrified of papers about it. It's so clear when you can like literally follow Cohen from like table to table based on how the air conditioning blows. It's just not I don't know when I'll be able to sit in the restaurant and eat a meal and not like have that anxiety hanging over, you know.

27:06 Okay, getting back to your Emma for the tangent. What advice would you give to someone who just received their?

27:20 Get out there get involved Get Loud.

27:23 Seriously, I understand that it is, you know a very personal thing and not everybody's going to want to share their story.

27:31 But you're not alone. What I found was that when I started really digging into that one 350 people in New England have MS. Stop one person from every grade that graduated from Natick High School. So was before even like realizing it I realized that we knew somebody from Nate. I thought we had grown up with figure skated with our entire lives. She also has got diagnosed with in a month of my diagnosis. I should have never felt alone. So my advice really is to get inform you that information. Yes. Scary knowing that there is this information was not really going to give you any answers. But I mean, we just live through this with covid-19 who so like we got information. It didn't really have any answers. It's similar in that sense. So we should all be used to it by now getting foreign stay informed. The information is changing all the time new drugs are being developed new technologies. Like they're using Pfizer's using the code.

28:31 Maxine to actually develop a new MS treatment which they're calling an MS back scene which could potentially lead to a cure amazing breakthroughs are happening all the time. So not only getting informed but staying informed things change and you need to stay up-to-date with the latest information in the latest research in the past year that National MS Society really push to get actual numbers because this wasn't a reportable is that the correct terminology centralized database as to how many people were living with MS. And when they did the study they had assumed it was about 500,000 people in the United States and the results they got back with that. It's actually a million a million of us. We're not alone everybody that I've talked to either knows somebody else their aunt had it their aunts brother their High School football coach.

29:29 It is so much closer to everybody than anybody would realize and so the more that your vocal the more loud you get about it the less alone you feel and you can start building your community because like I said, it was my community that really got me through it and I and I've been trying to help build that Community with other people and I continue to do that and just get loud.

30:00 So I know we talked a little bit about how I'm your like motivation for doing everything are there other people that you've met through some of your advocacy things or story that you've heard that you've really like resonated with or have inspired you to keep doing what you're doing.

30:19 Wow, that was a loaded one.

30:25 Yeah, so actually one of my friends that's Rockford spine a.m. He is amazing. He is one of the best Patient Advocates that I have ever met in my entire life. And so just a quick backstory first asked his mother had Huntington's disease which is a genetic disorder. So he had a fifty-fifty chance of finding out that he was he could have gone so he didn't do the genetic testing and he did it at an early age. So he found out at the age of 17 that he did have Huntington and for him again another nurse didn't you? It means he doesn't have a very long life expectancy. He's he is going to start McGrath. He is going to lose his ability to speak. He's going to lose his ability to eat and not the guarantee like these are not with me. It's a maybe one day and with him. It's

31:23 It's really like this is this is your life and he really has dug in and made it his life and he founded his own organization, which I'm very involved with our Odyssey. I love them. I do a lot of like patient advocacy events with him. He's constantly speaking. He's at TED talks and I I just look up to him. I admire him. He's completely dedicated his entire heart and soul to not only has caused but also all rare chronic illnesses and he right now is really focusing on the Young Adult Community, which is so important because again, we can isolate ourselves and make ourselves feel so alone really been instrumental in helping me build my community and I just admire him so much and you don't reach out to him all the time and I asked him for tips and tricks and little tools. I don't think I'll ever be able to really have the impact that he has but I hope that one day I can at least you know

32:20 Try

32:22 I was totally not what I thought you were going to go with that. But thanks for sharing. I thought you were going to talk about Jody and how like she does all the fundraising and it does all of the events and things like that. No, Jody bought them to I mean, I've met so many people through the society as well and I am like friends with a bunch of them. You know, I will get dinner you've been with me I will get dinner with people that we've met at different events. Obviously, I love to be involved with the society itself. And I love to support anybody who's involved with that. It's been really really great and really interesting and it again really nice to be able to really share more similar stories. So like I said before it was like our Odyssey and the other chronic illnesses, even though our diagnoses, maybe our stories are similar. It's completely different when you're talking to somebody else was like yeah, our stories are still different but they're still way more similar and whenever you have doubts and

33:22 Questions, it's always good to you know, how come you that you're comfortable going to in like hey this ever happened to you. And you know, some Jody has been one of those people that I usually we became fast friends and you know, I can talk to her openly and freely and she has her support network in her support team. She put me in touch with a bunch of them. So it's really important to have those people.

33:43 I think earlier you also talked about how important it is to advocate for yourself and knowing your neurologist office. They had a patient advocate. Can you talk a little bit about what working person would like in like the kinds of questions you would send to them?

34:00 I don't remember. I'm sorry. I just remember it like back in the early days when you were really struggling to get an appointment and like getting in seriously you were early in the diagnosis process. I was starting to go to 105 specialist than doing all of this on testing and poking and MRIs and spinal taps and all that fun stuff and I was really struggling to get appointment. I was struggling to get test results. And that was that was the scariest part was the unknown again. Like I already have no idea what a mess is but like now you can't even tell me whether or not I have it. So it was just so infuriating and I did speak with a patient advocate and they helped to rearrange my entire care to you. They took the doctor that I had been working with.

35:00 If my kids stay on reassign me to somebody higher up and somebody more experience without my they had them call me within 20 minutes. I got my test results right away. He apologized for the experience that I had had and he took over and he did really put me at ease and so you do need to advocate for yourself. But doing that definitely means relying on the resources available to you and took out the professional Advocate take them and let them do their job and work their magic because you might just be frustrated but at the end of the day like you deserve an answer, this is your health and this is your life. So whatever you have to do again kind of like ringing back to the Get Loud.

35:44 Doing clear your name means raging volcano. It. Don't think you've ever had an issue with being loud and okay. So why why do you want to tell others about your experience share my story? I just really want to be a part of something bigger and I want to feel connected and I want people to have something to connect to so I just wanted to be able to you know, share my part in this world and hopefully one day somebody here's some part of the it resonates with them, too.

36:25 Does all of the questions that I had great?

36:33 It's been nice chatting with husband. And I just wanted to say thank you again for being the most supportive sister that anybody could ever ask for being willing to take 40 minutes out of your day to have this conversation with me and on multiple occasions come with me to my treatment sit there for hours on end was bringing Sweet Treats along with and letting me come over for all the puppy snuggles when I need to be cheered up and mean extra love around and happy to help in whatever way shape and form.