Welcome to Living Well with MS, where we are pleased to welcome Krystina Christiansen as our guest! Krystina is a filmmaker who has recently finished a documentary about an end-of-life letter she found, written by a man with MS.
Overcoming MS wants everyone to live a full and healthy life with MS, but it is inevitable that everyone, with or without MS, will pass away. It is therefore unhelpful that death is often a taboo subject. Krystina talks to Geoff about healthy ways to think about your own mortality, her new film, ‘Dear Brandon’ and planning ahead for your end of life, which is something that everyone needs to consider.
Overcoming MS 00:01
Welcome to Living well with MS. This podcast comes to you from Overcoming MS, the world's leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life through the Overcoming MS program. We interview a range of experts and people with multiple sclerosis. Please remember, all opinions expressed are their own. If you enjoy the show, please leave a review. These are quick to do and really help us. And now here's your host, Geoff Allix.
Geoff Allix 00:33
Welcome to the latest edition of the Living Well with MS Podcast where we explore topics relating to living a full and healthy life, with multiple sclerosis. We're pleased to welcome filmmaker Krystina Christiansen as our guest. And I will just start with a little caveat saying about living a full and healthy life with multiple sclerosis in that this is a very different podcasts we're doing today. So we are discussing the other side of MS which is about the fact that the mortality of it so dying with MS. I'm aware that some people might be triggered by this may have gone through bereavement. So I wanted to just give you a heads up what this is going to be about and give you the choice whether you want to listen. But I think it's a very valuable topic. And something maybe to listen to at a later time or, you know, it's worthwhile discussing because we talked about a particular person who had MS and, and the journey they went on with Krystina, who's a filmmaker. So Christina is a filmmaker based in LA California. She's produced, directed and written all sorts of different pieces from documentaries and music videos, to ask installations and talk shows. She's currently campaigning raising funds for a short documentary called Dear Brandon which follows a former outdoorsman who's now paralyzed with MS. And at the end of his life, writes a letter that was left on a hiking trail in Utah by a social worker. This letter then made its way to the highest peaks in the world, by a family of strangers. And we talk about how Krystina finds this letter 3000 miles away in Hawaii. So with that, welcome to the show, Krystina, could you start off with introduce yourself and tell us a bit about your connection to multiple sclerosis.
Krystina Christiansen 02:29
Thank you so much. I'm very happy to be here, because this is one of the shows that I actually listened to when I met Brandon, to learn more about MS. And so I wasn't bombarding him with questions that I'm sure he was getting quite a lot. So that brings me to my connection with MS, which was in May of 2021, when I was hiking on a trail in Hawaii. Prior to that, I would say throughout quarantine, and probably before that I developed this gratitude practice of being grateful for various things. But one of the things in particular was just my ability to be outside and to move around. And so anytime I would go on a hike, I would always end it with just a lot of gratitude and awareness over the fact that I got to do that thing. And I am also very aware that some people might not have that access. So we're at the top of this trail called Mokopuna point, which is the easternmost point of Oahu. And my friend sees a piece of paper under a rock that says please read me. And so we pick it up, kind of scared, because we're like, what is this? And it turned out that it was a letter from a man named Brandon. It said, Hi, my name is Brandon. I'm from Sandy, Utah. If you happen to be reading this letter, I believe it's for a reason I want to share my story with you. And then he went on to share that he was diagnosed with MS in 1999. And prior to that he was super active in outdoor sports. But now he found himself at the end of his life on hospice with a bit more left to give. And so it was put in this letter, his hospice worker hiked it up to a trail in Sandy. And then it was spread all over the place, as you said, and that's how I found it in Hawaii. And that's where it began.
Geoff Allix 04:12
So tell us a bit about the film that you're working on and how this is tackles the themes of death and grief.
Krystina Christiansen 04:23
So the film came about after about, I'd say two months of knowing Brandon, I was really cautious in the beginning about,I don't know why I just felt like I didn't want to bother him too much, even though he was just the most open person ever and always checking in and always very genuinely in conversation with everyone. But about two months in I got a text message from an unknown Utah number and honestly, I thought it was maybe his social worker saying letting us know that he had passed away, but instead it was a link to an article that said, Sandy man with MS prepares to leave hospice says passion project saved his life. And I was like wait, what? But he's leaving hospice, what happened. And then it turned out that at least in the States, you're only given so many months of hospice care. And if you're not regressing as rapidly as they would like for you to, they will start to rescind some of the benefits. I don't think it's a great thing. But it's something that happens. So he had started gaining weight, he just wasn't declining as fast. So that's what happened. And of course, the news picks it up is like, oh, he left hospice. So regardless, I just thought it was an incredible story. And so I got on the phone to Brandon again, I was like, I hate to be the filmmaker that wants to make a film. But this is such a good story, Brandon, would you Can I at least come and interview you? Would that be okay? And he goes, Yeah, I thought that's the whole reason why you're even befriending me it was because maybe you wanted to make a film. So he agreed. And then we started working together on what this would be. And essentially what it is, is, I do a road trip from Los Angeles to Sandy, I stop and leave the letter in various mountain peaks, it just so happens to be a beautiful drive between many national parks. And I interview a handful of people that Brandon felt he connected with, I guess a bit more than others, or that he thought might have a more interesting story to tell. And that definitely included an interesting group of people. So I interviewed them then met with Brandon and his family and, and from there, I really thought that was going to be it, it was just going to be explaining this really cool experience of meeting these people and meeting Brandon and talking about this letter. And then it ended up being a lot more than that, throughout the course of our friendship just getting closer and experienced a lot, a lot of grief and loss together. So that's where the themes of death and grief come in. Because to know Brandon is to know someone that is going to die, he is on his deathbed. And that's kind of the social contract that you're agreeing to when you do become friends with him. And I also like to point out that that's the social contract you have with everybody. It's just more obvious with him, I guess. But because of that, there were times when you know, you do just talk about it. And I've learned that sometimes just talking about it does make it a bit easier for everyone. And so I think, yes, we were making this documentary, but really, Brandon kind of brought together this, this family of people who are going to go through this grief together in a very specific way. And whether he meant to do that or not, that's what happened. And to this day, we are all pretty unified in that. And we know that we have each other if we do ever need to express what's happening in our lives specific to this to this loss.
Geoff Allix 08:00
So the name of this podcast is Living Well with MS. But you're really talking about dying well with MS. So what have you learned about dying well, if you have an incurable chronic condition, so is that informed you at all?
Krystina Christiansen 08:19
I love that question. Because if you zoom out, or if you come out enough, we all have an incurable chronic condition, which is the human condition. But I do see what you're saying, you know, specifically with with Brandon's diagnosis, I think it comes down to I mean, dying well, is to live well. And it is all the same thing, really. I, in addition to doing this documentary, I just so happened to also be doing a feature documentary that was about the death care industry. So I've spent the last year and a half very immersed in this topic and being around a lot of people who are dealing with this specific thing, that thing we're all going to deal with. And I think that that's what I've taken away from it more than anything is that if you want to be intentional as possible, and get a little bit of control back with this thing that really we have no control over. It's to live intentionally as intentionally as you can. And I think the other thing that I took away from it is to make sure that you make a plan for your death, if it is something that you have that we all actually have the opportunity to do this. But making a plan makes not only your end of life a bit smoother, but also for the ones you leave behind. It makes their lives a lot better, a lot better, and allows them to just focus on grieving versus the dealing with the business of death and the other things that people that really can trip people up and tear families apart. And I'm not saying this theoretically, I'm saying it as someone who, while meeting, Brandon had experienced back to back losses in my life, including with my own father. And I saw it, I witnessed it, and I experienced it firsthand. So I think, if anything, if you want to make sure that your death is a bit kinder to anyone, make sure it's kind to your family, and that you have a plan. And it's one that has to be followed, and also maybe aligns with your, with your ideals, when it comes to the methods of disposition, when it comes to your body and all of that.
Geoff Allix 10:41
So has it affected your own relationship with mortality, I mean, you don't have a chronic condition. Well, we know hopefully, hopefully, you don't have chronic condition. But has it affected how you think about your own self and your own mortality
Krystina Christiansen 10:58
A bit, I think that it's, you know, I actually it's made me probably less afraid to talk about it, I lean into that conversation a lot more easier than I probably would have before. Through both documentaries, we met with so many like death, doulas, and people who are working specifically in this space. And I think through that experience, it just made me realize that it's very therapeutic for everybody to be talking about, about this, there's like death cafes, where people will come in and have a space where it's not taboo to talk about it. And sometimes in these death cafes, they're not talking about death, sometimes they're talking about their rock collection or something, but it's tied into something that they're just holding on to, or something that they really love about being alive. And so I guess it's maybe made me more grateful for being well, and just, I look at my mortality, not as I'm not as hesitant when I'm looking at my mortality, I'm just like, Okay, it's not an emergency, it just is what it is. And if I can, if I make the choices of, you know, making a plan for myself and for my family, that's what I can do. That's the control that I have. And I guess, just reining in a little bit of control in this situation is what has helped that relationship to mortality. So yeah, I guess I just talk about a lot more than than I ever thought I would, but that's it.
Geoff Allix 12:31
Yeah, and it's gonna be different, because this is going out globally, there'll be different in different parts of the world. Because in the UK, we don't have the same legal term, like we have wills, where you basically can leave it with a lawyer. And then they have your you know, what's going to happen legally. But that can that it's not just the legal part of it, and how your estate would be divided between children, for example, but it can be anything, it can be songs that you want to hear at your funeral, or you can put any wishes in there. So but I don't know if that relates to every part of the world legally, and whether the same systems I mentioned, they're probably quite Something similar would be quite wide ranging.
Krystina Christiansen 13:10
Yeah, I think. I do also think that for the most part, it is legal, there's something legal about, you know, you have to write something down at the very least, get it notarized all of that. But beyond that, I think going to the other documentary, one of the big things that we also took away was just that there's all these different options like you know, you don't have to have a traditional or what you would say as a traditional home going well you know, so or some people don't call it a home going they call it a send offer or anything. You know, for some people there's things like conservation burial, which is how you can use your depth to conserve pieces of land that you know, should be conserved and not used for, for mining or drilling or cutting down trees or anything like that. You can even even I know like in the UK cremation also in the US cremation is a lot more popular for many reasons. But people don't know that cremation atleast fire cremation can be pretty harmful to the environment. So if you're someone who likes to recycle, and you're doing beach cleanups every weekend, maybe you don't want to be cremated because you're actually contributing to the chemicals that are in your body are going to go into the air and into the lungs of not only your loved ones, but people around the world because what not to get too much into the environmentalism part but like what happens is it goes up in the air right? And then it rotates. So the choices we're making here are affecting you or in China and and I don't think we realize how that's all connected. So you know, but there's other options like water cremation. And so I think just looking into these different options that align with your ideals. I think that that will make people feel a bit better about about this thing that like I said, of course is inevitable.
Geoff Allix 14:55
then my mother's got she's she's arranged this all I mean, data She just said, If I die, you'll find out this sort of stuff I've arranged I'm going to be buried somewhere where there's woodland growing. So there'll be trees growing there, and those trees will take my nutrients and carry on. So she's having a biodegradable coffin, and then a tree. There's her plan. But yeah, so there is all sorts. I mean, you take cremation here in UK because we're very space constrained. Quick question. So yeah, great. Certainly church graveyards are largely for that, basically. So yeah, there's all sorts of, and there's there are religious things as well. So that's obviously a factor.
Overcoming MS 15:36
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Geoff Allix 15:53
You mentioned I saw that Brandon had a social worker and hospice staff who actually helped him make decisions about the goals for his his end of life, and what these goals have been how his care would be. So this is going to be very much talking about the US. And you mentioned already that there were pros and cons about how he left the hospice care. But what resources are out there for people to actually face this end of death and these decisions need to make? So what resource in the states would there be for them?
Krystina Christiansen 16:30
I think in the states well hopefully. This one I'm not super positive about but I would hope that everybody has access to hospice care. I mean, that's the very least, they should get actually just heard that now they're developing hospice care programs, even for people in prison, and they're training other prisoners to kind of assist with their fellow inmates' hospice care, which I think is really interesting. So it does seem like it's, it's getting less taboo, and people are talking about it more. I think also, just because we just went through a pandemic, this is on everyone's mind, and they're trying to figure out ways to make death a bit more kind of an experience, if that's possible. As far as other resources, like I said, so there's death cafes did not know that was a thing. But you can just go online and research death cafes, insert city here. And I promise you, there's some really cool person that is putting together a little group once a month, probably in a library or somewhere in a public setting where you can come and just talk about these things. And I think it's good for anyone who maybe is either dealing with their own mortality, but also those of others. If you have some anticipatory grief, if you have someone in your life who you know is sick, for example. There's death doulas, which I think is such a beautiful thing that I wish was more common. And it's just like a doula for birth except for at the end of your life.
Geoff Allix 18:00
That's like we'd call it a midwife, I think is that it's like a nurse who helped assist a doctor in a birth. Is that a doula?
Krystina Christiansen 18:09
Yes. Except for I don't think you have to be a nurse. That's the only difference is you might not need to be medically trained. I could be wrong.
Geoff Allix 18:20
But you're someone who assists in a birth and this is assisting you in the other end to transition. Right? Yes.
Krystina Christiansen 18:26
And I know they definitely have them in the UK because the the to the death, doulas that we interviewed for that feature. Were actually both British, so they must have them in the UK. But yeah, so I think getting a death doula, I think that's the one thing I would definitely do for myself if I was in a position to make a choice about this, because they are so gosh, they really lean into the thing that maybe other people in your life want to back away from. And they just are with you as much or as little as you want to be. I think the other the other big thing, as far as resources is just to know this one thing that I took away, which is that death is not an emergency. So if you do have someone in the home that passes away, you don't have to call anyone immediately you can take your time be with your loved one. And there is no rush it you can even have people over to come say goodbye in the home, you can prepare the body in the home, there's so many different options. And as I said, you know, just making sure that you educate yourself on this options, what's legal in your state and your country and make a plan around around those things. And if something that you like is not legal, figure out who you need to write a letter to or an email to to make it legal because it should be. Most of these new options, honestly are just being fought back by as you said the church that is connected to politicians and money and it's you know, all of it always ties back to money. So but if the consumers want something different than these companies are changing their methods and they are buddies with, with different religious leaders. So, so yeah, just figuring out what options exist and what you want to happen to you. I think that's the best place to start with when it comes to resources.
Geoff Allix 20:18
You mentioned death cafe. So how did you find what sort of differences do you find it made with that community and connection with other people to go through that living and dying Well, phase?
Krystina Christiansen 20:35
Oh, community and connection is everything. Brandon's first letter that he received was on September 22 2020. And when they put that letter together, Brenna his social worker said that he was graying, that they thought he was going to pass, and maybe we can have two weeks. And when they've got that first response, she said in her interview that it felt like he turned it back on. And then he went on to live for another two years to the date, September 22, 2022, was when he passed away. And I firmly believe that that is because of the new connections and community that was established as a result of this letter. So it is very, very important, I would say, nnow I actually fight like hell more than ever to make sure that I have a good community around me, because I've, you know, you read the articles that say that loneliness is equivalent to smoking two packs of cigarettes a day or something crazy like that. And I believe that but it honestly was not until I witnessed Brandon's story and his experience, and his end of life, that I realized this is the truth. And there, I can't wait for science to do more research and figure out why this is other than I think what the obvious thing is that we're humans, and we are social creatures. And we need connection. And I think it's so important in a world where we are convincing ourselves that these other they're real connections, but they're not real, like social media is not real. That's not what's going to extend or enhance your life, what is going to extend and enhance your life is real connection. And it doesn't have to be in person, Brandon didn't meet all these people in person, but he was having real conversations with them. And I think because his letter was so open and honest and vulnerable, it attracted other men were willing to meet him were just so if he was able to do that, I think any of us can do that. And he was able to do it from from his deathbed. I mean, he was he was a quadriplegic he was, if he was able to do that, I think any of us can do that. And all of us should be fighting like hell, to make sure that we have people around us like that, and that we're being open and honest and vulnerable. To ensure that we live healthy lives, I think that's something that a lot of people miss, like, you can eat well, you can exercise every day, and whatever, whatever. But if you don't have connection in your life, it I don't think it actually means much.
Geoff Allix 23:05
And so to add in, there is this idea of circles from Overcoming MS. And so there's loads of local groups around the world. So check out the circles, because then there is there are people who are in similar situation, if you've got multiple sclerosis. And I found it hugely beneficial. Because when I first was diagnosed, and the county I live in, there was no one on there's one person, and then they left so I sort of sort of set up a group here. And then if you don't have a group, set a group up, if you have a group that's not very active, just say, I know you want to meet up or if you want physical connection, if you just suggest, let's have a meet up in a cafe somewhere, then people will come along, most certainly. And it's just such a great experience to meet other people who are going through exactly the same as you can because no one else understands it. Like someone else is going through it your family, your friends, they don't fully, really get it unless they're going through it. So I really would encourage you to join up with people that have that connection. It's been been so beneficial for me. And I'm really grateful that actually there's a now there's loads of us there's huge numbers in this area of the UK, but there is around the world. So I know this, they're all over the place everywhere. So as a final thing in that with this. You've mentioned that about Dr. Brandon. So there's going to be links in the show notes all about it. But just to ask you where can we watch Dear Brandon.
Krystina Christiansen 24:35
I can't wait to know where you can watch it, I guess. Once it's in the film, bustle circuit and all of that, I will say in the meantime, the best place to figure out the status of this film would be my website, krystinachrrstiansen.com/brandon. That will be like the hub of just all the different links to you know, say we're in festival season if you're in the city that the festival is that then you can go there and see it there. And then oh, ideally, after that, we'll get some distribution, hopefully on a streamer, or something like that. So people can watch it from home. But in the meantime, on that site, there is a campaign trailer, I know this episode will probably be coming out after the campaign is finished. But yeah, there'll be a link to the campaign trailer. So you can see kind of where we where we started with the film. And we are also in talks on connecting with getting a fiscal sponsorship. So if anybody does want to contribute in any way to the finishing of the film, it'll be considered, at least in the US a tax write off, which is, I know, an incentive for Americans. Because it's considered nonprofit. And the big thing I think, actually I would recommend for everybody to do is follow Brandon's Instagram account that they set up for this project. It's called @forbrandonslove77. And what's really cool about that is even to this day, people are still finding the letter. And even though the letter has been updated to say that he's passed away, they're still responding with these incredible stories. And Brenna his social worker shares them on that account. So I think more than anything, the coolest thing is just to follow that Instagram. And you'll get to see these really beautiful stories of people who have connected with the letter. And I don't think I mentioned this, but at the end of the letter, he asks for readers to be his arms and legs and take a photo of the view and share a bit of his of their story with him. So that's what these posts are, it's a really nice photo of some mountaintop somewhere or a river somewhere. And then a nice story about how Brandon's story affected them.
Geoff Allix 26:51
Okay, so yeah, with that, do check out the show notes, because there'll be links to all of that. And I just want to thank you, because that is really a an incredibly positive discussion on something which is obviously, mostly a very negative subject. But so thank you very much for joining us. Krystina Christiansen,
Krystina Christiansen 27:10
Of course, thank you for having me.
Overcoming MS 27:15
Thank you for listening to this episode of living well with MS. Please check out this episode's show notes at overcomingms.org/podcast. You'll find useful links and bonus information there. Have questions or ideas to share? Email us at podcast@overcoming ms.org We'd love to hear from you. Living well with MS podcast is for private non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice for medical advice please contact your doctor or other licensed health care professional