Between Two Kingdoms: A Mother Daughter Conversation

[Music] so at 22 i had recently graduated from college and like a lot of young people i not only felt invincible and immortal but there was a sense of the future being limitless with possibility i had no idea really what i wanted to do but i was excited to take my time figuring that out and so i ended up moving to paris uh where i worked as a paralegal though i had these dreams of maybe somehow someday becoming a writer i wanted to be a foreign correspondent but before any of that happened my life was interrupted i received a diagnosis of acute myeloid leukemia shortly before my 23rd birthday and it was one of those moments where you feel a kind of bifurcation a terrible kind of sundering that happens where there's your life before and everything that comes after it did go from taking a beautiful picture of our daughter taking off for paris with her new wetsuit case i still remember that picture and her smile and the feeling but everything was good you know open to her and then when she came back and not looking so good and then the slow it took a little while until we got the diagnosis but the slow realization that this going back home was going to to to to last a little longer first for me was a huge relief to know that she would be able to come back home and that i would be able to take care of her because i think it's a mother's first instinct to just want to be there for um whatever needs that your children have so that was first of huge relief and then um there was no question for me that i would put everything aside so that i could be there for for for you for suleika um but of course there was a fine um rope to uh fine line to to walk between being there for for my daughter and not being there too much you know she was a young adult she was not supposed to be here um and i could totally um understand that from her point of view um and for mine i just needed to be there and take care of her you know i've always prided myself on being fiercely independent um on having tough skin tough skin is one of those things that we're told we need to cultivate um but my diagnosis really stripped away any semblance of armor that i had um and pretty much right from that first month of be getting treatment i found myself as dependent dependent on my family and and caregivers as i'd been since infancy and at first it felt horrifying it was frustrating um it was humbling in the most brutal sense to go you know from having worked very hard to become an independent adult to suddenly needing help with everything from getting out of bed to fixing myself a sandwich or even walking around um was a kind of terrible reminder of our fragility of how everything can change as the author joan didion said in a single ordinary instant but ultimately you know as the months passed um i came to feel a deep sense of appreciation for the fact that i could be dependent that i had family and friends around me that i could lean on who could take care of me um for anyone who spent any amount of time in a hospital you very quickly learn that now everyone has the privilege of having a caregiver and it's no exaggeration to say that i wouldn't be alive i think if it weren't for my family uh for the fact that my mom for example got to really you know focus uh all of her energies and her time on taking care of me in those early months and years of treatment but i imagine for you as a caregiver there's this sense of powerlessness when you get a diagnosis uh you have to cede so much control uh to you know the disease that's ravaging the body to the medical teams to all the unknowns and at least for me it was really hard to know how to swim in that ocean of just uncertainty and at the time you know i was 22 so i didn't necessarily want to have to move back into my child's bedroom to have to be so dependent on my parents after working so hard to be my own kind of self-sustaining semi-adult um but it makes sense to me that when you were in action mode and you were taking care of me that gave you a kind of focusing goal but one of the early things that we did was a 100 day project that first summer in the hospital and the concept was really simple we were each going to do one creative act a day every day for a hundred days and my dad wrote a hundred and one childhood memories that he compiled into a little booklet and later gave to me um and i'll let my mom talk about her project that she did um but uh my project was was journaling and it was you know felt something like something that was doable i wasn't writing for anyone other than myself it didn't matter how good it was didn't matter if it was just a sentence or just a word but to have something to do other than just being sick i was really important and to be doing that with my family with my friends i think really gave us something to talk about other than uh my diagnosis and it was this kind of way of staying grounded and inspired and accountable but mom i'd love for you to share what you did for your 100 day project right so my 100 day project was creating um an armor a shield for suleika by making a small little ceramic piece that was about this big i should have one here to show you so and on each ceramic piece i would make i would sometimes write something sometimes just put a color or paint a little picture and uh they all had holes on the corner and eventually assembled all these pieces into a shield that looked more like a kimono and that's hanging on sulekha's childhood bedroom as we speak and uh it took actually more than 100 days every day because there's a lot of pieces and she ended up being sick longer than 100 days but that's that's what my project was and i was able to look at it later on once all the pieces were done i reassembled them and i was able to notice how certain periods had certain colors there's a point where there are birds appearing then the birds started to scare me because i don't know it looked like they were flying off with something then i moved on to something else so it uh it was her protective piece at some point um sulekha after her her transplants kept getting sick again and having to be hospitalized and she called me to uh to come and stay with her because she needed more care in new york so i remember that i had not finished assembling this shield this magic shield that i called and it still was in like big pieces and i said oh my god i have to finish this protective seal so i put everything in a little suitcase and i went to stay with silica and i finished you know tying all these little pieces together and then actually you never went back to the hospital ever since then did you know that i know my my friends and and family would have you know been very sad to hear me uh express probably just how guilty i felt but i think it's a it's impossible not to feel like a burden when something is happening in your body that is having this enormous ripple effect that hasn't just offended you know your own life but but the lives of everyone you you care most and love most in the world and so i felt guilty about how much time and and care i required i felt guilty about inevitably the time and care that that took away from my brother i felt guilty about the financial strain that it placed on my family uh about the fact that my mom had turned away from her work and was spending most of her her her time that first year focused on my needs i felt guilty every time my dad would come back from one of his daily walks in the woods and his eyes would look bloodshot um i felt guilty all the time and you know i think part of it was that i i wish so badly of course that this hadn't happened to me but that i could somehow spare them of worry um and of course you know that wasn't possible and i knew that then um but it was this sort of constant companion um and the only thing that seemed to sort of alleviate it a little bit was uh later when i had the opportunity to meet fellow patients who who became my friends um when i got the chance to speak to people who had lived what i had lived and to talk about things like guilt and to understand that that sentiment was a shared one um and that in a way it was normal it didn't make it any less real um but at the very least i knew i wasn't alone in that feeling of guilt i was struck when i read the book i still found out about quite a few things when i read uh in between two kingdoms about that about the fact that sulekha felt guilty about it and made me very sad and i you know it but but i totally understand it um and i wish i i think there is not much to do except for realizing that it is normal and a lot of other issues i struggle with where also lightened a little bit when i found out it was not my own issue but you know it was something that had to do with the illness with the whole whole situation there are times when you just don't know how to take care of yourself because it's too much and one of these times of previous periods was when soleka was hospitalized my husband was back home teaching and i was we were staying with friends nearby but the friends were away and i would walk back from the hospital each night walking down madison avenue and thinking i was totally drained exhausted because i wasn't sleeping enough don't be worried and um and i was thinking what can i do to feel better so i would go in my i mean my head through what what what i just needed it's almost like you're just a little bit underneath water what do you do to just breathe a little bit so i was thinking about do i call france vest to exhaust things and i would go you know go to the movies no that's too too overwhelming and nothing seemed to be desirable in a way so i kept going there and but i noticed day after day that at some point during that walk back to our friend's apartment i would have this feeling of breathing a little bit of of relative lightness uh and it was always at the same point in my walk back and then i just noticed i was passing by a window to a gallery that was selling antiques and they had beautiful buddhas that were really like masterpieces that were sitting in that window and that the kind of peacefulness or the harmonious curves or who knows maybe something else was kind of kind of catching me maybe like caressing me a little bit and passing and was making me feel better and i said oh my goodness that's art um so i started going to the mat because it was nearby and i would go and look at one painting at a time because that's all i could do so my surprise was that um art i knew that creating art being creative was helpful like we talked about with the 100 day project or being in my studio but i didn't think that consuming art from the other side would also have this effect and i'm an artist i should believe in art but somehow i thought art when there are emergencies when things are too much you know that's something you art is something for when um you have time for what but it turned out it was not the case and that was the one thing that made me feel better i would go and look at the the girl with a pearl earring by vermeer uh because it reminded me of suleika and then all the the relationship between light and dark but he works on and so what i want to talk about is that what i want to say is that sometimes we don't even know what is going to make us feel better but we have to be maybe observant of of these tiny little things that happen and then activate them so that was one mom i just want to add i remember one moment early on after my diagnosis we went uh to the hospital for a doctor's appointment my oncologist the wonderful brilliant late dr holland looked at you and noticed you had lost weight and i remember him very sternly saying to you you have to take care of yourself so that you can be strong for your daughter and it's not open to negotiation you have to prioritize your health and i was struck by that um and i wonder how it struck you when he said that yeah what came what what he added is that he said your daughter is going to need you in the long run and i think as a caretaker when we have uh you know when we have the announcement of of a grave illness you get into this fight and flight response and you you are the alert over time and you don't realize how long it might be and it and it was so that's what struck me about what he said i knew i had to take care of me but i thought i could let it go for a little while because i needed so much to to to do my my best so it is an important thing to know that you don't need to be on the alert over time and you can allow some normal life in between which i didn't know i thought when someone has cancer that's it all they have is cancer no that's not true there are lots of times in between difficult moments or events in the illness when you can not go back to normal but you can allow yourself to uh to yeah and i would not allow myself even my my friends i was staying with were insisting what they say oh have a fun you we want you to meet you know spend the take the day off and go and meet her in brooklyn and i couldn't do that i thought i had to be there for silica every day so something i could uh i will have to remember i could share for people who are having to face this is that remember that yeah it's going to be it might be in the long run and you know these times of response in between of breath in between are so important and eating i think one of the most surprising aspects of the cancer variant was what happened after it was gone i had this expectation that i would feel excited and that i would somehow eagerly and organically fold back into the rhythms of living that i would you know migrate from the kingdom of the sick and return to the kingdom of the well and that didn't happen after you know almost four years of being sick uh i was no longer a cancer patient um but outside of that identity i really had no idea who i was and i was really wrestling with um the imprints of that experience and my body on my mind on my sense of identity and self and i spent this really difficult passage in the months after i was done with cancer um where i really didn't know how to move forward with my life and so ultimately i ended up deciding to go on a road trip uh because the thing i kind of intuitively knew that i needed most was to learn to navigate the world alone without a caregiver uh without anyone and to really carve out the space and time i needed to feel safe in my body to get to know the new person i was becoming and to make space for all of that and so i set out on a fifteen thousand mile road trip and sulega took off on the trip and actually of course i was nervous especially about her idea of of camping um uh so that was one one one stick point for me uh but luckily it turned out you got scared the first time and then you spend a little more time in in motels than in camping so i was secretly happy about that but otherwise the principle of traveling like this for me was wonderful because it meant that things were normal again that's what a young adult should do they should scare the parents a little bit with big plans big projects things that are going to open their world uh you know a sense of adventure we don't quite know they don't know yet but it's it's really uh beautiful to think and i think that's how i took it mostly but i was so happy but there were so many unexpected moments of grace and mercy so many unexpected lessons that even in the moment i understood were ones that i wanted to carry forth with me if i did survive um and one of those and you know maybe it's an obvious one um was how important it was to have loved ones it's such a you know simple thing that i think a lot of us take for granted until we're in a position where we really need care where we need an entire village in order to make it through a difficult passage um and so i think as a family we've grown a lot closer as a result of that experience i talked to my mom and dad almost every day this week was an exception because i had a busy week and i didn't call them for an entire week which you know was felt like a real novelty and a real transgression but i don't know that we had that kind of closeness that kind of relationship i certainly don't think that as a 22 year old i had an appreciation for the countless sacrifices uh that my parents have made for me i i think like a lot of young people who are lucky to have loving caring parents you take that for granted um so that has been a big thing that i've held on to um the other thing that i've been thinking a lot about in this last year during the pandemic is the importance of community and how we conceive of community um the friends who i expected to be there for me after my diagnosis weren't always the ones who showed up um but the flip side of that was that i met so many people i would never have met if it weren't for my illness the fellow cancer patients i befriended during those years in treatment the strangers um and you know long uh forgotten childhood friends the neighbors who showed up and and observing their acts of generosity i think for me has raised the bar of what it means to be a friend what it means to have community it's made me want to be more thoughtful to be more generous to be more compassionate and it's changed the way i approach all of my relationships but the the concept of moments of grace during surveillance illness they were not moments of grace they were almost like like dust the golden dust that was everywhere but i we learned to notice that we're almost like moments of appreciation every time i don't know if it's the equivalent of a silver lining but it was not a willful uh decision to let's look at the bright right side of things but there were bright sides to almost everything almost every moment the fact that we were together indeed i remember mr lake i think oh now when when you're at the beginning when when when you your boyfriend came back home and then you said oh i'm just missing and she was back home and you said i just missing adam and then everything my brother and everything will be fine so whether the most important having people around the sense of community whether it's family or friends or even when we were driving down the the the highway at 3 am going back to the emergency in new york three hours away i was incredibly appreciative of the fact that we had a highway to drive on and that's how i would really look at everything and maybe that's what helps us you know withstand the difficulties of things but that's that's how i lived the feeling of grace all throughout because they were everywhere waiting in the waiting room and thinking oh looking at someone by themselves and thinking oh my goodness i should go and sit next to this person it's so hard to be by yourself how lucky we are but we are there as a family but another big one for me after reading suleka's book is realizing that i had not faced a lot of fear that i was feeling through through her illness and i put everything aside and i blocked it all and having uh reading the book made me face you know reality of what it was and so that's my moment of grace now i'm older and i'm determined to be adventurous as so like i was taking the risk and dealing with with the with the concept of fear at my advanced age right and then uh and and then taking this as as a lesson that uh whatever we fear the most um you can hide from it uh but it won't help you and it's uh it's if you can it's it's it's much it's much better and it will get you to maybe an easier feeling of grace if you can face it and tackle with it and and live with it and journey with it for me the process of writing is one of excavating the truth beneath the truth beneath the truth so it's always a transformative experience whether the subject is my own life or someone else's um and so in writing about my own illness um i really pushed myself not just to kind of widen the aperture of how i understood what had happened to me but to consider how it had impacted everyone in my radius my mom very generously gave me her journals from that time uh so that i could understand her perspective and that was you know profoundly humbling uh to really um get to read in her own words what this experience had meant for her um the process of you know uh going through my medical records which i had never done uh was its own kind of um sort of uh bewildering uh realization of just how much my body had been through um and it gave me a deeper understanding of why you know i still carry some of that wreckage in in my body and and more than that an appreciation for how hard my body had fought and and what it had endured um so i think um the process of of self-examination of interrogating those pivotal moments in our lives whether you know you do it in the context of a book or privately in the confines of a journal for me has always been in essential uh process of understanding the world better and understanding myself and my place in the world a little better [Music] you

Channel: NPAF National Patient Advocate Foundation

Views: 2,491

Keywords: healthcare, health care, patients, advocacy, patient rights, cancer

Id: Le2AVDKuih0

Length: 28min 15sec (1695 seconds)

Published: Mon May 24 2021