Season 4 Episode 7: Laura Sergeant and Beth Anne Fisher - Grief, Memory & Care

In this episode, we sit down with Laura and Beth Anne to explore the intersections of grief, disability, memory, and creativity. 

Laura reflects on the complexities of being a sibling to a disabled brother, Matt, and how writing transformed the way she shows up in that relationship. We talk about how medical systems shape our understanding of identity and how memory can both anchor and shift our sense of self and family.

Beth Anne shares how collage has become a spiritual and emotional practice, offering a space to hold absence, womanhood, and the sacredness of embodied life. We talk openly about miscarriage, and how grief and longing show up in their art. This conversation moves through themes of fruitfulness, theological expectations around gender, and the healing power of creating a home for our emotions.

This episode holds space for tenderness, creative expression, and the many ways we find meaning through storytelling and art.

Watch on YouTube with closed captions here: https://youtu.be/TX7ZEz2DQTo

Read Laura's piece here: https://jps.library.utoronto.ca/index.php/cjtmhd/article/view/44514

Read Beth Anne's piece here: https://jps.library.utoronto.ca/index.php/cjtmhd/article/view/44511

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Transcript

Welcome to the Mad and Crip Theology Podcast it's so nice to be here with you today and we are excited to be we're excited that it's finally spring at least I am I saw some tulips coming up in my garden yesterday so that made me very happy um before we get started today speaking to our guests bethanne and Laura we just have a couple of announcements that we wanted to mention um we are still looking four pieces for our uh Anthology that the Madden cryp theology press is putting together called growing up female and Evangelical Madness faith and the search for community so if you are if that resonates with you or you know anyone um in your family or friend group who might be interested in writing something or creating something for the anthology um the deadlines uh the end of April so we' really appreciate you submitting something uh you can check us out on um Mad and Crip Theology press.ca and you'll be able to see some information about that um also we have a call for content out for the uh Canadian Journal of Theology and mental health and disability for this fall it's just like a general call so if you have papers kicking around or poems art stories that you feel like you're ready to get out in the world we'd love for you to submit and um as well a fun thing the Mad and Crip Theology press has some new t-shirts up on our website so if you're interested in repping the press that way and uh getting some cool new t-shirts into your spring wardrobe you can check those out and it's the first time that we've ever had uh our t-shirts in stock so I'm excited to to start mailing those out to folks yeah so those are our announcements for

Today I think to begin we will invite you both to introduce yourself and your book and for Beth Anne we are going to show your collages so for people who are watching on YouTube you can they can see and you can kind of just describe for people listening. Sounds good. So why don't you introduce yourself?

Hi I'm Beth Anne um I use she/they pronouns I am a bunch of of different things I'm trying to finish my PhD uh in theology right now um and I also um yeah I do I do a bunch of things but I guess what's most important in terms of here in our conversation today is that I am increasingly finding the arts to be a part of my I want to say spiritual practices and in particular I realized maybe last year or so that doing collage has become a spiritual practice for me um a way to be present to myself and be attentive to myself um and and to invite God to be a part of that uh in a in a really Gentle Way and so um yeah my submission or my what was published in the journal is a series of four collages um the first two collages uh which are called um Cradle at all and a curious Castle I made those two um at the same time or kind of back to back on the same weekend um I was on a spiritual Retreat and my spiritual director had we were talking about kind of this being at this juncture of like holding my past and then also looking forward and what it meant to kind of allow my attention and my energy and my heart to move from the grief I was was holding to what might be ahead of me and so as we had talked about that I I just had this real desire to to make a collage out of both of those things so cradling it all um kind of darker colors some black and white um images that for me really represented uh some of how I was feeling about what I had been through in the couple of in the kind of two or three years before this time and then um uh the Curious Castle in contrast a lot of really bright colors um and this ended up being kind of for me an image of my inner landscape um I really love uh Teresa of Ava's idea of an interior castle and so that was kind of what I was holding as I was doing this was thinking about what does my interior castle look like and for me it ended up being more of a landscape of not just a single building but this kind of um layers of uh of a landscape and so yeah there's a lot of curiosity built into that one um and then the next two images uh the next one these two images I did uh at different times and they weren't ones that I came to the collage with a particular kind of goal or aim in mind it was more a sense of um what I was drawn to and not even really knowing what it was that I was trying to put on the paper but um yeah but kind of just sitting with it and uh and and pulling things together and so this one I'm not even here if you had asked me at the time what it was about I I I would have sensed said that there was something to do with kind of femininity or like femaleness in it but I didn't really have much beyond that but when I went back to this um as I was pulling it together for the journal I looked at this image and I immediately went oh I was processing um my first miscarriage and um what that meant and all these ideas and how that touch is on gender and relationship and family um but especially kind of identity as uh as someone who has been socialized and is in many ways a woman um and then the last one um I was off work and I was in a really um things were really heavy but I knew I was going to be okay I knew I was going to be okay I knew wouldn't last forever and I was trying to practice rest in a way that I eliminated as many obligations as I could and I let myself be drawn to whatever it was that kind of sparked interest or sparked energy for me cuz I didn't have a lot of energy and so this came together over probably a week or two of just kind of um yeah again looking at images and then spending the time as you can see some of these are really delicate to cut out those long skinny mushrooms are really um tricky and so that kind of the gentleness and the care and the attention to the details of this coming together and then as I was kind of putting it together I it was just a scrap of um a magazine that I had cut out for something else but in the scrap I just saw this phrase I suppose I was depressed that day and it just um it just struck me as exactly what was kind of happening for me and so yeah it became this kind of um acceptance of my depression but at the same time um there was this kind of lightness to it of like yeah I suppose I am depressed this day but I also there was this temporal space to it and and this sense of um that not being the only thing that defined me even though it was really dominant so yeah that's me and those are those are my collages for this thank you so much for well it's well looking forward to talking more about your work.

And now can you introduce yourself and your piece for the journal? Hi I'm Laura Sergeant and I worked in for about 30 years as a clinical social worker um my specialty was child and youth mental health um and I worked in a hospital setting so there were often a lot of um diagnostics you know as part of access to care but also we were a tertiary care hospital well still are but I've retired um and so the Young people we saw um might have outstripped the needs in their local communities um and I came to social work late um I spent my 20s working on being a musician and realized I needed a day job to pay the rent um and what I loved about social work and I retain that identity is um it recognizes intersectionality um and always looks set an individual sort of in the context of you know their own humanness um but also who they are in their family who the family is in the community and what um pressures or limitations or lacks you know or oppressions you know does someone face um and I grew up in a multi-disciplinary family in a way my my father was um a clergyman as my mom said um he studied at McMaster Divinity School um worked for three years as a youth pastor um and then decided the piece that appealed to him was um psychology and kind of working with kids he ended up working as a math teacher to kind of pay the bills while he was thinking about school and fell in love with the teaching so he was sort of a teacher and a clergy man my mom was a nurse um and then this piece is about one of my two living Brothers um and one brother is a physician and still living and of course I was a social worker and then Matt uh the youngest brother um and this is in some ways what the piece wrestles with is what do you say about a sibling with a disability when someone says you know oh what does Matt do um and I think I always struggled with some shame um with not being able to say something conventional um and so Matt was a human being and he loved music and loved his church and you know um was married and had a rich life and also had myotonic distrophy which um impacted him both in terms of mental health physical health um and in some ways like would have been on the Spectrum but was never diagnosed but I you know I I think was neuroatypical um and so this piece is uh it was focused like the idea of almost a lens on a single moment where as my mom's health failed um I began to take more of the responsibility and attended his specialist appointments with him and we were very fortunate that uh neuros sort of Developmental neuro um degenerative disease clinic was in our hometown so Matt went once a year and really loved seeing this physician and in a particular meeting um The Physician was really kind of uh discouraging and there there was sort of I think that the piece was written out of one single moment like sitting with Matt waiting for this fellow to come back and that also transition of kind of becoming Matt's mom in in that moment and and that that handoff had occurred um and and would be for the next you know 10 years of of his

Life well thank you oh sorry I was just gonna say and I think that then the other is just um what I'm spending my time on these days is

Writing beautiful it must be so nice to have some time to to do some writing it's a luxury I'm speaking from a point of privilege when it comes to free time oh yeah yes that's amazing I I hope we will all be able to do that too at some point I sort of shove my writing into like little pockets when I can get to it and reading for pleasure oh yeah that's another really important one yeah um all right so I I think what we'll do now is um we'll talk to bethanne a little bit about uh her pieces um we had sent you some questions in advance so um hopefully they resonated with you I think we sort of uh kind of already talked about the first one that we sent you in the inner introduction bethan so we'll go to the second one um so uh you described creating a home for emotions through collage through doing collage how do you see art as an act of care both for yourself and others yeah I think so I think often you know we've already named how much time is is a luxury in some ways and so I think we often um don't give time to our inner worlds and for me um I was just actually just said yesterday to my therapist I often don't know what to do I'm feeling a feeling and I don't know what to do with it and uh and so for me collage gives me something to do when I'm feeling or and also the time to feel the feelings um and then and then also there is such a there has to be such a gentleness to it once I am kind of assembling pieces or once I you know I want to say in the first stages of collage I can pull up tear a whole page out of a magazine rip up a take out a piece of of paper and say okay I'm going to use this in some way um but then as I get further into the process there's there's such an intention to detail that has to happen and like I said these pieces can become so fragile and so I think in in being gentle with and being careful and being patient and precise with these little pieces of paper in many ways it is being all of those things to the emotions that are tied to what is happening um and so I think for me it's an act of care that I'm I'm allowing my emotions to have an expression I'm and I'm giving them time and space to even evolve um I might start a collage with you know 15 20 pieces in front of me and maybe 10 of them end up in the collage and I find five others um but I think there's this process that is very similar to how emotions get settled uh of not of starting with kind of a vague sense of something and not knowing exactly where where it needs to go or what it is and um yeah I'm providing space for that to unfold and then I think it's an act of care for others in in the sharing of the collages because um I think there's something that people can connect with and whether it is connecting with it and seeing themselves in the image in some way or being drawn to the image or even being able to see in it something that maybe I find difficult to articulate in words but I can through an image communicate um something of those more difficult emotions um yeah so so I think it it is and and this touches a bit on the first question that I um that we skipped over but I spoke a bit about but the question about this being different from writing or other forms and um I do love to write uh for me again I would say that the two primary ways I kind of like create space for and and put my inner World on the outside of me is collage and poetry and so I do love words and also there are there are times that um I don't have the right words or I I need to even find a way to get to a place where words are possible um or the words feel too vulnerable um some of the things that are in these collages um I could tell you very specifically about what some of them are and and also I don't have to that there's a sense in which the the collage communicates something without me having to reveal the parts that feel the most vulnerable if that makes sense uh and so it feels like an act of care for myself in that in the safety that it provides um and and also provides something different than the written word does for me yeah that that make sense to me as you were talking about

And emotions that and deciding what pieces are needed in that collage and wondered if there was also a settling happening within you not that all emotions can sort out. I'm wondered that yeah I think that's why like calling this the overall thing this idea of collaging myself a home is that there is a settling for me in that process and that when I when I kind of get to this point of feeling like okay this collage is complete there's a sense of Pride and a sense of excitement of what I've created and then as I look at it and have this sense of congruence between something in me that was trying to be expressed and what I've put together it feels like a relief in some ways there's that sigh of like yeah this is this is it this is um in some way accurate which is strange to say because it you know what is it's accurate to what or like you see some of my images some of them are more abstract and yet there is for me the sense of um of yeah something has settled in the process and something also this act of externalizing something is not about trying to get rid of my feelings but like I said making a home for them like when I'm not sure where they belong or what to do with them um and and often again I I don't want to

Lose I don't want to lose the connection to these tender moments and um I mean three of the four collages that I have here are are grief related and um I don't want to lose the connection to those to those moments and to those experiences and I also know that sometimes it's too heavy to carry and so feeling like it belongs there I can access those images I can access the collage when perhaps the the memories are too much but I can know that I have this connection I have made something tangible that represents that experience um or or that dilemma or whatever it is um and so they act as these kind of like anchor points that really do for me again let me kind of um settle into what it is that I'm putting into the images

Yeah we wanted to talk on this you talk about your piece I'm Not Even

Here and how would reflects how you reflect on absence and womanhood and this idea of fruitfulness so how do you see this work fitting in with conversation about culture theological ideas about gender and embodiment?

And I love this question because it makes me want to cry and I think this is where there is something about this topic that is is very current and present that I'm still working through um I've had three miscarriages in the last year and a half and I'm 40 and so when it comes to uh biological children I'm quite uh realistically grappling with um that not being a part of my life and I've wanted to be a mother since I was old enough to play with dolls and I know that some of that is bound up in cultural expectations and also the I was raised in a fairly conservative Evangelical context and so ideas of Womanhood and motherhood are so entwined with each other and um and so that was something that I was immersed in from the time I was very young um and even as my own ideas about gender have shifted and I mean I said at the top I use she they pronouns I think I I realized probably about eight years ago now I had this I was having a conversation with a um a loved one and talking about this recognition that I always felt like I couldn't get Womanhood right or like even when I was younger I wasn't the right kind of girl I was too loud I had too many opinions I was socially awkward I didn't have the cool clothes all of these things and uh and then finally getting to this point of saying what if I actually don't have to aim for that as a goal like what if that's not a moral um a moral requirement that I perform Womanhood in this way that I have up until then my early 30s had had felt this pressure to be um to be aiming for and so that for me was this such a freedom to release this box of gender and the cultural and and religious Norms of gender uh and it felt like such a relief at the same time um I knew at that time that I might I might not be able to have biological children I've had irregular periods and what not my whole life which again even just saying that in this space even though all of us are people with uteruses I feel this anxiety of like you're not allowed to talk about that you know um which is part of all of this anyways so so I still had this desire and I still you know kind of hoped for um hoped for that

So so I think like what is in this collage that I see now that I didn't fully see at the time that I was making it is this question of like where do I belong and so in the center of it where there's this cutout that's obviously a fem shape but all it is is um abstract splashes of color and this sense of I'm here but I'm not here and where do I look for those norms and those narratives and those images

That um that validate me and I I I mean that in a in a real sense of I'm I'm not interested in not being a woman and this is this is not saying that that isn't the case for others but I've thought about this a lot for myself I very much relate to being a woman and also I don't know where that is and I think that as I embraced this complexification of gender there was still this I don't even know if I've said it out loud before this thought that like if I'm a mother that still Roots me that still gives me an anchor in Womanhood um in a very specific way and if I don't have either of those where do I fit and what are the ideals or the values or the sense of goodness as is this kind of where do they come from and you know there's many ways to be fruitful or to be productive in our lives and I also think like again uh the Christian narratives around fruitfulness and what that means around biological reproduction are so entwined and this and this uh love of family which I have no problems with I I love family too but what does that mean for those of us for whom the conventional and assumed um ways of being are are not in reach for whatever reason that might be and um and what does it mean for me to be fruitful and and do I how do I relate to the yet Next Generation specifically of women in in the collage you have I have this kind of young younger girl reaching towards this space and I'm not sure if that's my younger self or if that's the Next Generation reaching and and what is it that I'm offering or what is it that I'm I'm and it's not that it's just about contributing but who am I relative to this next Generation? Um yeah I I've said a lot I'll I'll pause and see if you want to add anything or ask anything or if that's an answer in itself. Well thank you very much for sharing um for sharing that I I didn't know I know um for our listeners beth anne and I started the PHD program together have known each other I think you've known each other for eight years now Yeah 2017 is when we met. yeah so I didn't I and I just uh my heart was breaking when you were talking about the miscarriages so thank you so much for sharing for sharing that and I'm sure there will be um a lot of listeners who will be able to relate to that so we really appreciate um you sharing that part of your story with everyone thanks I think again it's something that uh I'm learning more and more you know the number of women who are people who are trying to um have biological children the number the percentage of them who have have miscarriages is way higher than we realize and um yeah a lot of people don't know how to talk about it and if I can say even one of my miscarriages which I'm intentionally calling a miscarriage happened early enough that the doctor said it didn't qualify as a pregnancy loss uh but I said but I knew that I was pregnant and my body knew that I was pregnant and I was I knew that that was happening and yet it happened early enough that in the medical field it's not considered a miscarriage it's not considered a pregnancy loss so not only did I experience the loss but I've been told that I didn't actually have a loss even though they knew that it had happened Laura did you want to jump in and say something just I mean and what that leads to is what we call disenfranchised grief yeah you know do you want to say more about what that is for the it was just the idea that it's a grief that's not recognized kind of communally so it becomes sort of invisible it becomes hard to speak of doesn't yeah and it's interesting because when you say that again two of these other um collages are about different forms of dis disenfranchised grief actually also related though again to to family and parenting and motherhood um I've also been a foster parent and um in the first collage uh cradling it all there's a tiny almost hidden face of a baby and um I had been a foster parent for over a year and um uh my my partner at the time had a major Mental Health crisis and in the midst of this Mental Health crisis this little one who had only known our care well almost they they were 4 and a half months old when they came into our care was taken out of my care without notice and um and I have not seen them since and have had no contact with them since and that's another form of this disenfranchised grief where this was not my child I knew that they were not permanently my child and yet the way that that happened is exactly what you've said this form of um denial that that is a grief or denial that I have had a right to grief so yeah so that's very much real and I think many of us have those forms of disenfranchised grief in different ways and when we can't put words to it or we don't even know if we have permission to put words to it I think that's where again for me images um can be yeah and the other thing you know it certainly relatable for me as well is um you know I'm sort of childfree but not by choice in a way just sort of by circumstance that's another for sure um kind of quiet identity loss where you sit beside traditional women and Womanhood as it's defined and how do you even participate in a conversation at work when people are comparing Milestones you know I I would lean on the Intel you know I was close to a niece and nephews um but it's like you need to borrow children um to engage and and they're you know I have another friend who's experienced you know pregnancy loss before um she did have children and again it's like I'm not ready to show up to your baby shower and people not being kind of understand or sort of support that yeah thank you I that's so real and I think along with that so the other piece for me is having been a foster parent I sometimes talk as a parent or I sometimes like those milestones and and then I realize oh if I explain my intimate knowledge of teething or of learning to walk then I have to explain the whole backstory and then it becomes something that feels so complicated or even sometimes I I will talk in ways that people will say oh do you have kids um or like oh you must be a mom and then it's like no question mark or no ask risk and it and so it becomes so complicated um and then and then maybe I don't want to get into the grief of it all maybe I just want to be able to say that I'm familiar with that but it's something that is then has so many um layers

Yeah and I think

Um power powerful conversation that doesn't happen enough in Christian wider

Society so um we'll move to Laura for now and talk a bit about your work and the first question is around um the tension between love and responsibility and grief in sibling relationships and yeah I'm curious from a disabled body sibling um what you wish more people about being the sibling of of someone with a disability well I think there's such fierce loyalty and it's the only family experience you know so and there for me there was you know like almost seven-year age Gap and Matt was younger so there was almost like a natural order to things that um he maybe needed extra care when he was little like just it was maybe harder for him to have naps or but in ways as I describe in the piece we'd actually thought he was a bit of a genius um he he kind of out stretched some Milestones uh anyway I guess all that to say is that I think every CIB experience would be quite unique depending on how and what the sibling is struggling with so it could be an invisible kind of disability you know like explosive behavior or you know um and for me with Matt with that age Gap I think there was more intimate awareness that he was struggling if I had friends over and then there'd be certain rules or you got to be quiet or like I did have one friend sort of say oh I remember we used to always have to be quiet cuz Matt was asleep although my mom would argue that it was like a oh yeah we were really chill we didn't tip to around any um and it sort of hit in some ways in adulthood um for me where were more of his um challenges like because it was Progressive so the physical challenges became more apparent in into his 20s and 30s and Beyond I think what we were dealing with when he was younger were more learning disabilities as diagnosed and with a field because this was the 1970s so my parents were strong Advocates and did at least get um learning disabled and that was value added because they could Advocate at school and it did help him find some peer groups and I think they were part of forming um an association for children with learning disabilities so that he had a little friendship group um but but for me as a sibling I think it's more through teenagehood and adulthood and you're realizing your si isn't hitting all the same milestones and people just like do you have kids they're asking these questions like uh what's Matt do and that's where it's like oh I don't know what to say um and it took time for me to recognize that I'm measuring Matt against me you know like it's like that that othering experience that I'm placing myself in in the center of a point of comparison um versus Matt is Matt um and and it takes time and confidence to be able to lean into that but I mean the other is that I sibs are watching like I'm evaluating all my friends um by their behavior and it's like are you kind to Matt or not um and there it was like an easy sorting procedure in terms of who the good eggs are in your life and and you know you're always so grateful that you go to a family party that like I'd have one eye out and it's like oh lovely Dave's talking to Matt like that the people who would lean in and um not turn their back on you know whether it's like missing social cues or some gaps in hygiene or things that made it maybe less easy to chat with Matt perseverative around topics um so there's certainly that gratitude and then I think I just heard on a podcast the other night I think there they identify there's a billion people with disabilities around the world so does that make it then one and seven or one and eight like I don't know the global population off hand so it could be that in every two families you know you don't know what someone in there sips and then of course there's the the heartache for I I think for parents who would want you know a a good path for their their young person so we were certainly socialized to be Matt's people um yeah yeah thank you that resonates I have very fierce siblings too so yeah that's a good description. Over to Amy now.

Yeah thanks Laura when I was listening to you talk I I was thinking that you sound like you were a really good sister really good sister so sounds like Matt was really blessed by having you in his life thank you um I think in the interest of time we might go forward we might skip question two and go to question three that we had given you so um this one is about uh your storytelling is deeply visual often centering around photographs and memory how do you see memory shaping the way we relate to disability family and even ourselves yeah yeah this is an amazing question um

And I I think I had you know a handful of thoughts one is that that I think you know if we look at how our minds operate and in some ways that's what the piece was trying to capture is that it we don't think in a linear way and I I don't really feel like within me time is linear like I feel like it's more spiral or that experiences are stacked but there's that we can always access a younger version of ourself at any moment like it's just there below the surface um so those th some of that imagery was taken from photographs you know that you know my mom was great for candid shots of us so which is lovely cuz it it captures you know an aspect of you that's very different than standing in a row um and so these memories of Matt like listening to the turntable or like filling the bowl with raspberries then then the rest of the context you know comes back that he ate more before he even got into the house and there was none to put on his cereal um and so that mat remains right beside the adult mat you know who has more challenges than he did when he was young and those mats are still there now that he's gone um and I think the other is that depending on the sequence like how we want to structure our memory in a way or how we recall things then we do try to write that story like we try to kind of you know we make sense of our lives through story and that would change dramatically kind of depending on so in some ways this story I was sequencing this sense that wow he can use a turntable you know like he made porridge for himself when he was three like he did all these phenomenal things and then there's this sort of shock like he failed like he came home with a report card that said Matt failed scissors you know like so what kind of messages is he getting you know from from this young age how does that feel as a family it's like whoa what's going on and then he's having these experiences of kids whipping a bike down the Ravine you know like bullying that somehow miles and I like could shrug off stuck to him a bit you know so it's just

Different path and of course we're comparing our own path through childhood all of us to Matt's you know experience um so we can call that an arc of you know tragedy but it's like what are we measuring it against because it wasn't necessarily tragic it was more unexpected um and that in ways too you know I think he was dealt a really tough hand like no question about it um and and that's part of what the piece grapples with um being the sib who just won a coin toss like it was really arbitrary

Um yeah I

Just because that's some of the thoughts on on memory um

Thank you Laura.

Yeah and in writing this piece you mention that it changed how you showed up for Matt so we wanted to have you talk about that and have you share about how you saw writing as this tool to understand your relationship and understand Matt.

Um yeah your questions are also rich and thought-provoking um my process often is to do what I would call like a free right so it's not really I'm not aiming at anything it's very kind of unconscious um well at least I'm trying to tap into the unconscious by just kind of writing without stopping and and I think at one point you know then I'll go back through all you know sometimes say it's like an iceberg and it's just I've just thrown piles of snow at something and then later I I kind of chip away and and see you know oh there's here's you know blue snow and red snow and and and I separate things so I did have a document you know with things thematically related to Matt that then I can pull some of the imagery from um but for me this piece kind of was exploring the places where I felt I failed Matt where it's like it's easier you know to hang out with the CB who's more similar to me by by age and interests you know so I I think a lot of the challenge for me with Matt was around um like the more concrete language and you know like even interest in shows you know it might be like action things you know which I understand even better now um I mean if if I wish for anything it would be that we understood autism and and that I had that lens from a much younger age it was more through my work life that I in my own head it's like oh um and you know like I would say I liked things with more subtext or um so we had very different interests um and so it was sort of writing into the shame of that and arriving at a place of forgiveness you know that that there ways that I was maybe doing my best

Um and just this realization or like examination of to what extent the I I guess am I wanting Matt to be more like me um and some of that might be and I wouldn't at all judge my parents like I I think it was helpful they they did push him you know and and he ended up you know um with a postsecondary you know certificate he went to the Harris Institute of the Arts and um you know was in this social group and he was Keen to be independent he always lived you know outside the family home you know as an adult and um but I think there were times maybe where um a after my dad died so from age 25 onward you know my mom was really a single parent for Matt and we also saw the writing on the the wall cuz it was the same illness and my dad had died at 60 so how long you know will Mt have and and it was almost like can we take the foot off the break like what's you know because one of the things we learned about the illness is apathy is one of the um Cardinal experiences so your house is going to be messy you you know you might not have more ambition than wanting to kind of watch shows or listen to all the beetle albums and sequence and so it was you know valuable to be able to um especially after my mom die to not feel like I needed to carry her intense torch that he kind of do his physio three times a week and it's like it's just not motivated like and there may be more quality of life for him to just be in his apartment ordering pizza like if one day his heart explodes like you know he did what he wanted um

And there were you know I think many things like my brother is a physician works you know with homeless medicine and in chronic continuing care so that was like this other blessing where he helped Matt land in the housing that he had um but but often like and both of us could see if it weren't for family and not that we're heroic but it was more like we had the ability to care for Matt in a way he would been homeless for sure because he you know he didn't read things well and back to that question we're not touching on but this idea of within Hospital Systems you know he absolutely needed an advocate and it's interesting in England they have a specialty in medicine that is like learning disabled and um so that and they were saying there can be um disproportionate experiences of you know aspiration pneumonias and and different things that can happen within a learning disabled population that um I think without the plain language without subtext you know um people would likely be untreated or undertreated and Matt tended to under report you know so if you asked him something concrete like have you fallen he might be thinking about the last two days it's like nope no I'm I'm all good but I know like broadly he's talked to me over the the year like you know he's fallen 12 times or something um so yeah anyway like I I felt really really lucky that in his last year of life I was retired I had the time and I'd spent like I actually knew how to treat OCD you know I knew how to kind of do the autism Whispering like I love that population and it's kind of this reciproc where I think Matt taught me to be empathic in a way um you know for others for difference to to realize that life isn't easy for everybody um and I I do believe they still think statistically they are more um like a slight over rep representation of um sibs of disabled folks being in caregiving professions um probably because you're you're attuned from a young age or you can see the importance of a Kind

Professional yeah thank you so much Laura I I totally resonate with what you just said about um uh how we end up in caring professions that's and how our family of origin can uh can um influence where we end up in life so than you for that and thank you so much for sharing about Matt life um thanks for giving the piece a home you know a little while to land yeah yeah we're we're very lucky to have it um so to to end up today what we usually do is we ask you both if you have a question for each other so if there's anything that's percolated or or come up bubbled up for you so bethanne I wonder do you have any questions you might want to ask Laura

Or any thoughts you want to share well I mean first of all thank you I think that this um there's two thoughts or maybe a thought and a question that are connected one is as I was listening to you talk about the fierceness of your loyalty to Matt and the attention that you give to how people treat him I think that is something I also um have felt even in some ways with fostering so I had um this little Wei one and then uh later on I had a teenager who I mean people are much quicker to show up in ways for babies than they are for teenagers and I paid a lot of attention that and and um and my my not my teenager I called I I called her uh she did she had some disabilities and I was very aware of how people engaged with her or didn't engage with her and I think there's something really important there about when we have these bonds when there's someone that we love who is whether biologically or kind of adopted into our family that we so attentive to um how the world treats them and how people in our own circles treat them and what that means for how we view other people anyways I'm just I'm kind of sitting with that and thinking about that as um uh not in a judgmental way but just a recognition of how powerful those bonds can be and and what that means um yeah what that means for for both people in that relationship cuz I'm sure Matt was aware of that fierceness and I know my my teenager um she knew that I showed up for her in a way that very few other people in her life did and that meant something really significant to her um and then kind of connected to that is I think this question of of Shame and the complexity of shame in caregiving and the ways that we can't make other people's lives easier and maybe the of like how do we name that or when when and where do we name that in ways that are helpful or when do we have to hold that and not put that back on someone else because you know it's not Matt's fault right um or but but also how do we how do we work through our shame in those in the context of these relationships um in a way that's yeah that's honest and honoring I don't know if you have a have a an answer ready to go but it's certainly something that I was I'm thinking about as you as you spoke and as I read your piece yeah and I I think it's you know Christ questions sort of it it's like how do we serve the other like the meek the the one that's not easy to care for that's who we need to turn to and turn to first um you know and and people might say things like well I don't like going into hospitals they make me UNC you know I don't want to visit someone in a nursing home but it's like it's not about you you know and um that's maybe the the gift is that that appreciation of the the the shadow side of life and the the dark moments and and what someone else needs um and and so that's where I was challenging myself you know to be more as or recognizing these gaps where I you know I wasn't inviting Matt over the way I might miles and maybe I could tell myself what's hard for him to get you know um yeah um and and I think bethanne for you like what I appreciated when you said you know that um sometimes you can use imagery above because you can't find the words and I was like yeah and that's kind of like I'm doing the reverse like I have an image and I'm trying to ex you know and it takes a thousand words and the the the image of the peach and the fruit um and fruitfulness you know definitely was one that resonated with me and I guess my question would be do you start with a single image first or you know um do you have stacks of like in terms of process yeah at this point I have I have like a small stack of images I've pulled out that draw me in or appeal to me but I don't know where they're going to fit right I have some kind of a small folder but I think um often I I'll start if I'm starting like fully Blank Slate I will always start by going through what I've already either like partially cut out or pulled out of magazines and start with what I already have and see what pulls like what if something pulls from to me from there um and then once I have a piece a couple of pieces then I usually um I don't know then I kind of will look through and again I have at this point so many magazines and art books like I will go to thrift stores and and pick up books of you know I recently picked up one of that was like Picasso's art and it's like from the 70s so there's like only four color pages in it but I also paid $2 for it you know and um and I love using both black and white and color so so there's that or or different magazines and you know kind of if someone so if someone's thinking of claing or you're thinking of claing it's like well whatever kind of magazines or materials you're drawn to um start with those and then um and then yeah I think that for me there's often a sense of like things once I have one or two things then then it's looking for other pieces that fit um and yeah I think like you were saying in some ways it's similar to that sort of um writing without stop there's like a very much it's very much an intuitive thing I'm not um it's it's very much led by feeling um in that same way for me and then of course there's like the layers of then coming back to it and and piecing it together or giving it time but the beginning is very much just just um intuitive intuitive if you will

Yeah thank you very much for for sharing such profound and valuable experiences and many words so we are grateful for your book in the journal and for the conversation here and we know others what we so thank you both thank you thank you Amy and Miriam for having us and yes yeah Laura thank you for listening and sharing and the dialogue it's always it's always a delight to be in this space yes it was lovely thank you so much for including me!