FAMILY COMES FIRST
ART IMITATING LIFE: JASON DASILVA
APPEARANCES IN ORDER:
VINCENT J. RUSSO
DEBORAH CARIOTO, MA
MR. RUSSO: Welcome, everyone, to Family Comes First. I’m Vincent J. Russo.
MS. ROBERTS-DROGIN: And I’m Victoria Roberts-Drogin. Thank you for joining us. What if one day you woke up, and you just didn’t feel right; maybe you shrug it off, and life goes on, but gradually you realize, you’re not getting any better. Something is wrong, but you don’t know what it is.
MR. RUSSO: Today, we will meet a young man, who is facing the challenge of his life; yet, he is living each moment to the fullest, as failure is not an option for him.
MS. ROBERTS-DROGIN: In a moment, we’ll have the privilege of sitting with Jason Dasilva, along with our experts from the National MS Society, and your law firm, Vincent. We will provide you with resources on what you can do if MS strikes you or your family.
And now, let’s take a look at Jason’s inspiring story.
* * * * * * *
MR. DASILVA:As a kid, I discovered filmmaking.This was me, five years ago; making documentary films, and traveling the world. And then, I was diagnosed with multiple sclerosis.
Probably around 2004, I realized something was wrong. I was walking off balance, and I was really having trouble going up and down the subway stairs, and then it just kept on getting worse. So, within the next year, that ‘s when I went to a doctor who put me to a neurologist, and said that I have multiple sclerosis.
She really helped me a lot, actually. She helped me and she didn ‘t help me. She was being like the mother, and really just kind of kept me in check; realistically, mentally with what I was going through, but at other times, she was, I mean, always she was there to support me. Even my grandmother, my grandmother sent me, she’s like an Advent Catholic, so she sent me two Lords to get healed as well, so she did everything she could.
So, it took like a year-and-a-half, before I decided to turn the camera on myself, and it was – – – I think it was, more than anything, it was a lesson for me to see myself on camera and to confirm what I’m going through. It wasn’t meant for other people at the beginning, but then I realized what impact it could have on other people going through what I’m going through, or really anybody involved in a triumph-over-tragedy-type of thing, so I wanted them to see what I was going through and relate it to their own experience.
Basically, I’ve been getting a year-and-a-half of emails from people, being like, ”When can I see your movie? When is your movie coming out? ”So now, it’s finally coming out.
MS. COOK: There are so many decisions that we don’t realize, that society reflects this notion that the normal user is able-bodied, and then we don ‘t include people with disabilities.
I think it’s like archaic notions that for whatever reason, you have a disability, or you’re at home, you’re sick, you can’t go out, and it’s just not the case.
MR. DASILVA: I mean it’s really an easy way in if it’s from my point of view, because people can relate to a single protagonist living his life, and making the film. It’s like a really great way in. And then, yeah, so it is from – – – these issues are from what we ‘re living, so – – –
MS. COOK: And I think also a big reason is that getting more stories of people with disabilities or chronic illness, it’s so needed and there’s such a catharsis for those people when they get out.
MR. DASILVA: I think the biggest thing is that people should, if they ‘re going through a challenge, big or small, be it MS or otherwise, just know that there’ s a light at the end of the tunnel, but there will be a way if you try hard enough to triumph over it.
* * * * * * *
MS. ROBERTS-DROGIN: We ‘re talking today with Jason DaSilva, an artist and a filmmaker, and we ‘re really talking about how art imitates life.
MR. RUSSO: We are so happy to have you here, Jason. Welcome.
MR. DASILVA: Thank you. Glad to be here.
MR. RUSSO: It was a few years ago, when I had the privilege of hearing you speak about your life, and how MS has affected you. At that time, you shared much of your family, your emotions and since that time, you’ve gotten married, you have a little child, Chase, and life moves on, and where did you get this courage?
MR. DASILVA: You know, that ‘s a good question, but I don’t think it just came out. I think I always had it in me. I always wanted to tell other people ‘s stories and do things courageously, but it wasn ‘t until something big happened to me that I turned the camera on myself and told my own story.
MR. RUSSO: But at the same time, life moves on, and you’re raising a family.
MR. DASILVA: That’s right.
MR. RUSSO: think that’s pretty courageous.
MR. DASILVA: Yes, it is.
MR. RUSSO: Under any circumstances, but knowing that you also have certain physical limitations.
MR. DASILVA: Yes, but it’s not me. It’s my wife, Alice, so she’s the one that really helps. She covers the gaps where I can’t do certain things. So raising Chase, for me it would be very challenging, but she helps support me in anything I can’t do.
MS. ROBERTS-DROGIN: You had spoken about your own morn. Now, as a parent, I think when we become parents, we look at our parents a little bit differently, but you had spoken about your morn when you were first diagnosed; even before you were diagnosed. One thing really stood out. You said, she helped you and she didn’t, because she wanted you to really do whatever you could.
MR. DASILVA: The best I could describe her is she’s got that tough love personality. She’s always been like this. It’s no different now that I have MS.She helps you with certain things I can’t do myself, but for the most part, she’s the same.
So she’s exactly that. She helps me and she doesn’t help me as well.
MS. ROBERTS-DROGIN: And you’re the oldest you said.
MR. DASILVA: Yes. And that may be why, too.
MS. ROBERTS-DROGIN: That doesn’t change.
MR. RUSSO: So, I want to know, are you the favorite child?
MR. DASILVA: She wouldn’t say.
MR. RUSSO: I know I’m putting you on the spot. We can’t say on the air.
MS. ROBERTS-DROGIN: We can’t say it on the air.
MR. DASILVA: She wouldn’t say.
MS. ROBERTS-DROGIN: But she must enjoy Chase now.
MR. DASILVA: Oh, she does. And she really enjoys now that the film is out there, and the world she loves, loves being on camera.
MR. RUSSO: Yes.
MR. DASILVA: And being on stage doing the Q & A ‘s and stuff.
MR. RUSSO: So tell us about the film.
MR. DASILVA: So the film is called, ”When I Walk. ” I filmed myself for seven years, ever since I was diagnosed. Well, it was actually one year after I was diagnosed I turned the camera on myself, so I started telling my story.
You know, as a 25-year old, who was a successful filmmaker before, what better way to do things than to just take the camera and flip it around and kind of do like a behind-the-scenes of my own story.
MS. ROBERTS-DROGIN: It must have been tough, though. There must have been some things that were hard to share.
MR. DASILVA: Oh, yeah. Around like year three or four, I was like, is this film really still going to be going on? And that ‘s when it got really tough. But on the flip side, it’s around the time that I met Alice, so that ‘s when the film got a little bit easier to do.
MS. ROBERTS-DROGIN: So, you guys have built an app to help people navigate Manhattan, and ultimately the world, maybe. Tell us a little bit about that.
MR. DASILVA: It’s called Axsmap, so that ‘s spelled, A-X-S-M-A-P. You can find it at axsmap.com. It’s like a mobile web. IT’s also a way for people to find out all the accessible places around them, and to rate and review them for other people. I just wanted to create something so people could find out what they’re getting into.
MS. ROBERTS-DROGIN: It’s sort of like a Trip Advisor. It’s the real truth about places.
MR. DASILVA: Yes. Exactly.
MR. RUSSO: So yes, the restaurant may say it’s handicap accessible, but you have to go around the
block to get through the back door, to get through a kitchen to get into a restaurant, perhaps.
MR. DASILVA: Or, they say they ‘re handicap accessible, and then you get there and you find out, their idea is different than your idea and they have one step, and then you can’t get in, even •though they think people in wheelchairs can get in.
So, I really wanted to make it for the people in wheelchairs by the people in wheelchairs.
MR. RUSSO: So, talk about why film? Was this something that as a child you dreamed of being a filmmaker, because you’ve come out with a number of films as well?
MR. DASILVA: Yes. This is like my sixth film. It’s crazy.
MS. ROBERTS-DROGIN: Wow.
MR. DASILVA: I started off, ever since I was a little boy, I was really big into comic books, and then I was big into drawing comics, and that turned in – and I was also very technical, so what better way to merge the two things together than work in film.
MS. ROBERTS-DROGIN: Right.
MR. DASILVA: So, at the end of the day, a film is just motion and sound added to the comic book.
MS. ROBERTS-DROGIN: And the story.
MR. DASILVA: Right.
MS. ROBERTS-DROGIN: You still have to have that story art, but you had that all the way through.
MR. DASILVA: Yes. So you don ‘t look on it as pictures, but rather you view it on the screen. It’s the same thing.
MS. ROBERTS-DROGIN: You ‘re telling stories to the world.
MR. RUSSO: So your story that you filmed, what messages did you want to send to the viewers?
MR. DASILVA: So, there ‘s a few messages, but I think – – –
MR. RUSSO: Notice I didn’t say one, because I had a feeling there were going to be multiple messages.
MR. DASILVA: I would say, ”Don ‘t give up, ” is a big theme of the film;”Follow your passion. ”That’ s what I did with making the film. And the third one is like, I want them to see the film as not a story just about a mess, or somebody getting over a disease, but it’s a story of triumph over tragedy.
MS. ROBERTS-DROGIN: Yes.
MR. DASILVA: That’s universal. That’ s something that people can take with them.
MS. ROBERTS-DROGIN: What is triumph to you? What is that triumph?
MR. DASILVA: Triumph for me is whatever your challenge or circumstance, is finding a way to change it or finding a way to redefine it for the better. In my case, it was I had this disease, 25-years old. My triumph was being able to make something creative that would help other people in the world. That ‘s what the film is.
MS. ROBERTS-DROGIN: And for your son.
MR. DASILVA: And for my son.
MS. ROBERTS-DROGIN: You ‘re making another film now?
MR. DASILVA: Yes. I’m doing a new film. It’s kind of like a sequel, kind of I’ve been filming for maybe a year and a half.
MR. RUSSO: You can’t talk about it, right?
MR. DASILVA: I can talk about it. It’s called, ”Where you go, I go.’ ‘ story, just next up to our lives.
MR. RUSSO: What I marvel about is how an event has occurred in your life, and it’s just another event of life and who you are and what you’re all about doesn’t change at all. You ‘re the same Jason that you were twelve years ago; maybe a little wiser.
MR. DASILVA: And it’s about redefining what was in your life before to keep going.
MR. RUSSO: Yes.
MS. ROBERTS-DROGIN: Yes.
MR. RUSSO: It allows you to focus on what’ s really important in life. We take so much for granted as we live through life.
MS. ROBERTS-DROGIN: And it’s what you said to us earlier, about the things you wanted didn ‘t change; family –
MR. DASILVA: That’s right, that ‘s right.
MS. ROBERTS-DROGIN: – – – love, your passion, your art.
MR. DASILVA: Yes, like why should I change myself based on having something silly called MS.
MS. ROBERTS-DROGIN: And you haven ‘t. You ‘ve gone after what you’ve wanted.
MR. DASILVA: And if nothing else, it taught me to be a little bit more focused. Where, I don’t think I – – – I mean, was twenty-five, so I don’t know, but I felt I wasn’t as focused as I am now.
MR. RUSSO: We didn ‘t get a chance to talk to your wife directly. She sees you as Jason.
MR. DASILVA: Yes, and then – yes, just the amount of challenges I had then, plus I have now, and they were just adding up. She took on the whole thing and said, ”This is fine.”
MR. RUSSO: Well, our show is Family Comes First, and you have created your family and part of your family with your mother and your siblings, and it’s just wonderful how your life is today. I wish you the very – – – we wish you the very best, and thank you so much for sharing your story.
MR. DASILVA: Thank you very much.
MS. ROBERTS-DROGIN: Thank you very much. It’s been inspiring talking to you.
MR. DASILVA: Thank you.
MR. RUSSO: Thank you.
MS. ROBERTS-DROGIN: So, we’ re going to take a break, and when we come back, we will get more information on MS, and what you can do if you or a family member find yourself in this situation.
* * * * * * *
MS. ROBERTS-DROGIN: Jason is really a remarkable man, Vincent, and there are many out there who are also struggling with MS.
Joining us today are some experts to help us navigate some of the issues associated with this disease.
MR. RUSSO: We welcome Deborah Carioto, President of the National MS Society, Long Island chapter, and my law partner, Frank Buquicchio. Welcome.
MS. CARIOTO: Thank you.
MS. ROBERTS-DROGIN: Welcome to you both.
MR. BUQUICCHIO: Thanks. Thanks for having us.
MS. ROBERTS-DROGIN: So, Deborah, I want to start with you, and we know that Jason was first twenty-five when he first started manifesting symptoms. He experienced weakness, balance, but it wasn’t almost until a year later when he fell down a flight of stairs that his mother insisted that he go to the doctor and be diagnosed, and after that, it took only a week for the diagnosis to come back.
Is that the typical pattern that you see? What happens when someone starts developing symptoms?
MS. CARIOTO: Unfortunately, that pattern is typical. People have a variety of symptoms that they experience, and it’s very, very difficult to diagnose MS completely. People will experience
MR. RUSSO: Deborah, can I just- because for our viewers, what is MS? Let ‘s talk about that first, maybe.
MS. CARIOTO: MS is multiple sclerosis. It’s a disease of the central nervous system. It’s an autoimmune disease, and it’s thought to be triggered by one or more environmental factors. Those factors have not been identified at this point in time.
So, what we’ve seen are people that experience things like loss of balance, difficulty walking, memory loss,concentration issues, numbness, tingling –
MR. RUSSO: That was Jason. That was Jason.
MS. CARIOTO: It’s really a variety of issues.
MS. ROBERTS-DROGIN: But yet, these symptoms are not, you know, when you hear the list, that sounds like, that sounds like a normal day sometimes. Not to minimize it, but they ‘re not symptoms that, unless they ‘re symptoms that are all together that would really require somebody to say, ”Hmm, I should check this out. ”
MS. CARIOTO: Together, sustainable.
The one test that really will confirm diagnosis is an MRI. There ‘s not one lab test that can be done that will confirm diagnosis, but an MRk will confirm, and we have heard stories of people that have gone on with symptoms for several years before they ‘re diagnosed, others may be diagnosed a little bit quickly.
MR. RUSSO: Frank, you were sharing your own family experiences.
MR. BUQUICCHIO: Yes, I have a family member who was recently diagnosed with MS, and young, younger than me, and as you said it was, if you pick any one thing that she was worried about, you would never think of something like MS, but in the totality, and she had to actually go get the MRI to get confirmed, and it amazes me that I have had clients and known other people with MS, it just seems to affect everyone differently. It’s kind of a strange disease.
MR. RUSSO: So what, as a planner, what’ s really important that someone in that situation do from a legal standpoint?
MR. BUQUICCHIO: Yes, I think everyone, and Jason in particular, especially younger people don ‘t generally think about things like legal documents, and basically, I call basic legal documents, a Power of Attorney, so that financial matters can be taken care of if you get to the point that you can’t do that for yourself. Healthcare proxy for healthcare decision making and of course, having a Will, and Jason is young and he and his wife are young, and God forbid anything happens, but you want to also make sure that your children are taken care of in the appropriate way.
MR. RUSSO: As we know, very few young people, young is anyone under sixty, no, very few young people in their twenties come into our office for those most important documents, but things happen, as we know and Jason had no clue what was going to happen when he was twenty-four.
MR. BUQUICCHIO: Right.
MR. RUSSO: When he turned twenty-five.
MS. CARIOTO: And the majority of the people that are diagnosed are primarily women, more so than men, in between the ages of twenty and fifty.
MR. BUQUICCHIO: You know, when we ‘re young, we ‘re impervious, we ‘re indestructible, so we don ‘t think about those things, and my experience has been that it takes some event happening either in your family or close to your family that triggers you to take some action. We don’t want to wait until that. We want to be proactive.
MS. ROBERTS-DROGIN: Talking about MS a little bit, it hits families, as we’ve seen, and your organization, Deborah, I know, has a multitude of services. What kinds of services are available for the caregivers? You know with Jason, we saw that he has a wife, and he has a son who is now almost two, and a lot falls to his wife, but also, you know, as a family unit, are there services that you provide to the caregivers, to the families?
MS. CARIOTO: Yes. First, most importantly, if somebody is interested in learning more about MS, they themselves were diagnosed, or if they are a family member, they can call 1-800-FIGHT-MS, and they ‘ll be immediately connected with someone that we call an MS navigator, and those are professionally trained people that can help them understand the resources that are available, answer any questions, and the purpose of this system is really set up across the country, so that people are receiving accurate, timely and consistent information. These individuals will spend as much time as necessary with the caregiver or with the person who is diagnosed as well and help them identify resources that are available.
Here on Long Island we have many resources for caregivers. We have video conferences, teleconferences. We have meetings that are set up in public places as well as in people’ s homes, so that those individuals who are providing the care, can reach out and meet and speak with people just like them.
MR. RUSSO: Deborah, you discussed the services for caregivers. What about the person with MS?
MS. CARIOTO: So, for the person that is living with MS, again, the call center is really an important resource for them. Here on Long Island, we have many, many, many different types of support services and groups. We have education, we have wellness therapy. We have groups like yoga, meditation, aquatics to help people with strengthening muscles. We have recreational and social opportunities for people to just interact with others. Simple things, sometimes, like, playing cards is really a tough thing for a person with MS, so these groups will meet so that people can interact with people just like themselves.
MS. ROBERTS-DROGIN: Right, and being able to, I would imagine, immediately after diagnosis to be able to have someone to reach out to demystify it must be so helpful.
MS. CARIOTO: Yes, and we
MS. ROBERTS-DROGIN: It’s very scary.
MS. CARIOTO: – – – do new patient orientation several times a year where we have a neurologist as well as somebody who is currently living with MS meet with the newly diagnosed and talk to them about what to expect, how their life has changed or not changing, because of their situation.
MR. RUSSO: I’m curious, you said wellness therapy. What is that?
MS. CARIOTO: Wellness therapy is really a way of people just engaging with others, maybe mentally, socially as well as physically to stay attached to their daily life; the aquatics program.
MR. RUSSO: And they ‘re not alone.
MS. CARIOTO: Right.
MR. RUSSO: And that life goes on and they need to live life to the fullest.
MS. CARIOTO: Yes, and they find what works for them. Meditation may be something that works really well for one person. Others might want more of a physical therapy-type of a situation which is found to have worked very well for people.
MS. ROBERTS-DROGIN: Frank, once we’ve identified some of these services,how do families or individuals pay for this? Well, I would say there ‘s probably one of three ways; out-of-pocket, of course, is one option. Most people would like to avoid that, if possible.
MS. ROBERTS-DROGIN: Or may not be able to afford it.
MR. BUQUICCHIO: Or can’t afford it, right. Long-term care insurance, if the person had the wherewithal and the ability to purchase long-term care insurance, obviously before the illness. So they ‘re going to look to the Medicaid program, most likely. But there, we ‘re of programs.
Somebody like Jason who is living in the community, thankfully, would apply, of course, for community Medicaid if appropriate. But again, we ‘d have to look at the eligibility rules, because the application process is pretty strict.
MR. RUSSO: Now, he ‘s going to be limited in the amount of assets he can keep in his name.
MR. BUQUICCHIO: That ‘s right.
MR. RUSSO: What about income?
MR. BUQUICCHIO: Same. He ‘s going to be limited to the amount of income that he ‘s allowed to keep. And actual living expenses aren ‘t really factored in, so which is one of the problematic issues with community Medicaid because not everybody can survive, especially on Long Island with the amount of income that Medicaid allows you to keep.
MR. RUSSO: And Jason married a couple of years ago, and has a little child, so when it comes to receiving that care in the Medicaid program, is there any relief for a spouse or a minor child.
MR. BUQUICCHIO: Yes, well the Medicaid rules do allow, what we call the ”well spouse” or the ”community spouse” ti keep a certain amount of income and assets for themselves to live on.
MR. RUSSO: So that could be critical.
MR. BUQUICCHIO: Absolutely, absolutely. The other thing might be under the Obamacare insurance, looking into the insurance for somebody like Jason.
MS. ROBERTS-DROGIN: Deborah, how does the MS Society raise funds? How do they raise money, and what do you use it for?
MS. CARIOTO: So we really rely on donor support; primarily donor support, corporate partnerships, some foundation support, but most of our money is raised through special events.
Our signature events are the Walk, which here on Long Island we have two walk sites that we run in the spring, one at Jones Beach and one at Belmont Lake State Park.
MR. RUSSO: Please support your chapter and the National MS Society.
Very quickly, what are you doing with the money; research, in addition to all the services?
MS. CARIOTO: Program services research. Research aimed at reversing or improving the quality of life that people are currently living with, stopping the destruction that ‘s caused by MS and then eventually finding a cure.
MR. RUSSO: We cannot thank you and your organization enough for all that you’re doing, and thank you, Frank, for your input on the legal side. This is very helpful, I think, to our viewers.
MS. ROBERTS-DROGIN: Thank you for being with us today.
MS. CARIOTO: Thank you for having us.
MR. BUQUICCHIO: Thank you.
MS. ROBERTS-DROGIN: And now we turn to Father Tony Stanganelli for a spiritual reflection.
* * * * * * * *
FR. STANGANELLI: See sickness and disease itself seemingly takes so much away from us and can make us even feel like we ‘re a prisoner; more than a prisoner, like we’ re imprisoned in our own bodies, and we can’t do once what we were able to do.
But, sickness and disease cannot take away our attitude about life itself. We ‘re free to choose our attitude, whether we see life as a victory, worthy of celebration or will we see life as a tragedy, something which we just have to endure day after day after day. Beautiful testimony of Jason Dasilva as he presents himself to us as a wonderful model of someone who is able to embrace that attitude of joy and hope in the midst of his own chronic illness of dealing with multiple sclerosis.
And there he is, telling us that he has chosen an attitude of joy to celebrate the victory and to inspire others in their sicknesses and their struggles with life to likewise embrace life as a victory. As he told us, if people are through drudgery, I want them to believe that there is light at the end of the tunnel. That power to embrace such an attitude is a grace. We need to pray for that grace in our lives, then we can embrace life as a victory.
* * * * * * *
MS. ROBERTS-DROGIN: We ‘ve certainly been inspired by Jason today He has shown us that by being struck w an illness doesn ‘t mean that it has to the end of living how you want or doin< what you love.
MR. RUSSO: That’ s right. He ‘s example of living the life you were gi to the absolute fullest.
MS. ROBERTS-DROGIN: Absolutely For a list of resources, legal service please visit Vincent ‘s law firm. The website is vjrussolaw.com.
MR. RUSSO: Thank you, and we should all have the bravery to go out do what we love, no matter the obstacl1
Thanks to all our viewers for joining and remember, Family truly does come first.
* * * * * *