Living a Life of Care with Guest Elvina Scott

Special guest, Elvina Scott, joins Tina and Serena, the Mental Health Mamas, in a conversation around caregiving and living a life “of care”. Elvina shares openly about the challenges of unpaid 24/7 caregiving for her daughter, Colby. Colby is a highly-expressive soon-to-be 16-year-old with severe, intractable epilepsy. Listen in as Elvina shares her thoughts on self-care, ableism, systemic challenges and the gifts that Colby has given her and her family.

Notes and Mentions

Episode Mentions

Burnout by Emily and Amelia Nagoski

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This podcast is sponsored by: Better Help

Transcript

Serena: Hey Everyone, I’m Serena.

Tina: And I’m Tina and we are the Mental Health Mamas.

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Serena: Welcome to No Need to Explain, we are so glad you’re here.

Tina: First, as always, a quick disclaimer.

Serena: We come to you NOT as mental health professionals or experts in the field, but rather as the parents of kids who struggle with their emotional health.

Tina: If you or someone you love is experiencing a mental health crisis, please seek professional support. You’ll find a variety of resources in our show notes and on our website, NoNeedToExplainPodcast.com.

Tina: Today we welcome someone I am lucky to call a friend, someone I first connected with as a parent maybe 8 years ago. And just like other parents like us, she has a story and vast experience before she was a mother and yet motherhood for her, as it has for us, has afforded us life changing opportunities and life lessons that have shaped us moving forward. I met our guest, Elvina Scott, at a training for parents. We each got a minute or two to talk about our parenting experience and when she spoke, I found myself drawn in, not only by her story, but perhaps I was more drawn in to her calm, present wisdom. And we hope today that you might lean in and listen to the wisdom of a fellow parent and Mental Health Mama, Elvina Scott.

Serena: Welcome Elvina, we are so glad you’re joining us today!

Elvina: Thank you. Thank you for having me. I really love the conversations you’re bringing into the world.

Tina: Thanks. So, tell us a little bit about yourself.

Elvina: I am mom to Colby and Coral. Colby is almost 16. Coral’s 13. My husband and I, Craig, are both full time caregivers to Colby. And, let’s see, Colby’s disabilities presented when she was about six months old. She has severe intractable epilepsy and is non-verbal, but highly expressive. She needs full support for all aspects of daily living. To be fed, the bathroom, move around, everything. And she’s had a lot of surgeries.

Tina: Yeah. And I’m aware that a lot of those surgeries; Colby spent a lot of time in hospitals kind of far away from home and that’s a lot for your family to manage.

Elvina: Yeah, it’s been hard. It’s definitely been hard. We couldn’t do it without our community, for sure.

Serena: Hmm. Yeah, so let’s talk a little bit about what this caregiving role is like for you. I think it’s important for us to try and understand a little bit of one another’s worlds. So, as a parent we often are left feeling like “Not Enough” and in the book Burnout by Emily and Amelia Nagoski, they refer to something they call, Human Giver Syndrome. They state that, “Human Givers must at all times be pretty, happy, calm, generous, and attentive to the needs of others which means they must never be ugly, angry, upset, ambitious or attentive to their own needs. Givers are not supposed to need anything.” So Elvina, can you give us your take on caregiving and perhaps the skewed value it seems to have in the world?

Elvina: Yeah, I have a lot to say about caregiving.

Serena: We’re ready!

Elvina: That not enough feeling. You know the first thing I thought of was, you know, like I said Colby’s almost 16 but I still feel like maybe I didn’t do enough. You know, maybe I didn’t try XYZ magical therapy that I never heard about or just try hard enough. And if I had tried enough, you know, she’d be in a radically different place and she’d be happier. So I still, I still hold myself to this kind of distinct special needs not enough. But I think also in terms of negative emotions or not feeling OK about expressing negative emotions, I didn’t want people to see Colby in a negative light. I didn’t want to reinforce this idea that her life, therefore my life, was like this tragedy. And I really didn’t want to buy into this kind of narrative of everything being hard even though it really, it’s hard. So, but it’s not only hard. So I felt like the more important thing to share about Colby’s life was, you know, her joy and so most of what I’ve posted of her is her laughing and her joy because that’s the part that is surprising to people, but it does leave a lot out. But I think caregiving in general is, you know, we live in a patriarchal society. We’re still operating in a patriarchal model and since caregiving is feminine and female, it is, by definition, undervalued. And if we, as caregivers, challenge that, we’re actually challenging the entire social hierarchy and if we really had some kind of caregiver revolution, it would change every corner of the economy. And so there’s a lot of people invested in keeping things the way they are. The people who are benefitting from oppression don’t want to see it change. If people, if the oppressor, you know, the oppressor by definition is benefitting from the situation they’re not gonna want to change it. So we’re rewarded with admiration when we kind of comply with our end of this. This very, very, very old hierarchy. I was thinking. This is an aside, but I was thinking, this morning when I was thinking about caregiving, I was thinking about how, I was thinking about Kamala Harris and I was thinking about how we’ve shattered so many glass ceilings, but there’s a glass ceiling in our homes that still is very much intact.

Tina: Mmm. For sure. And I love that! A caregiver revolution! Love it! Love it!

Serena: So Elvina, knowing that you, as a family, receive services through OPWDD (the Office for People With Developmental Disabilities), can you talk a little bit about that and how caregiving is viewed?

Elvina: Yeah, so when I stopped working full time, 4 or 5 years ago, it was because of a, an actual, like, physical breakdown. Of trying for years to balance full time employment in a relatively stressful job with 24/7 caregiving of Colby. And caregiving for Colby means, I don’t think there’s been a night that wasn’t interrupted with sleep. So it’s physically hard, it’s emotionally hard. Sleep deprivation is hard. So when I stopped working I was put on disability leave by my doctor and I thought, you know, there has to be a way around this. Like there has to be a way for this work, that my husband and I were doing staying at home. He stopped working when I went to work because I wanted a turn. And Colby misses like 50 days a year of school at least, you know, and has surgeries so there’s just no way both of us could work. So she qualifies for essentially 24/7 care, like every hour of every day is either school or direct support, but we’ve never had anywhere near that number of hours of help and definitely not during the school day. So, you know, I approached every single person I could think of. State, local, everybody. Agencies. Politicians. I was quite the squeaky wheel. You know, saying like, this child, she qualifies for 24/7 care. She has two parents who are at home doing the work. One of whom was put on disability leave because the work is so demanding. She cannot, according to a doctor, work full time. It turns out that there’s no concession for a parent being a paid caregiver. Even if that child qualifies for 24/7 care and you cannot find the people to work the hours, which is the case for almost everyone because there are shortages because it’s caregiving work and underpaid because it’s feminine, female. So, anyway, when I really kept digging and digging into, there has to be, it was just so logical to me. If these hours are there and I’m the one doing it, I should be paid. Like, that makes sense. But as I dug, what I found is that the stated reason in Medicaid and OPWDD is that parent caregivers cannot be paid because the parent would be doing the work anyway. Literally. And so, the Federal Government is explicitly saying, We are relying on the biological fact that you will care for your offspring. We are so confident in your total oppression as a caregiver that you will continue to provide this care, no matter the cost to you, that we therefore possess no need to ensure that care, to ensure that care for Colby, we don’t have to ensure it by treating it as a job because you’re gonna do it. Because it’s your kid, of course you are

Serena: And clearly at a huge cost.

Elvina: A huge cost. Yeah. And, you know, that doesn’t even get into the long-term poveritizing effects of relying on, you know, SSI and SNAP and not contributing to Social Security. Much less just the dignity of a job and dignity of having your work treated as what it is. Labor. Work. But then you’re not contributing to your Social Security or your retirement. I mean, it’s exponentially povertizing. Really, it’s a huge issue and it’s not personal, it’s systemic.

Tina: Yeah and societal, right?

Elvina: Yep.

Tina: You said it before that people say, So what else do you do? Well, I am raising people and keeping them alive, how about that? How about that for a job? That is amazing, right?

Elvina: Yeah. But yeah, I think caregiving needs to be paid and that would change the whole dynamic, you know, in terms of caregivers being not allowed to complain. Like if we were paid, we would be able to complain because you complain about your job. Like, everybody does that.

Serena: Yep.

Tina: Yeah. So, it would be amazing to be paid to be a parent.

Elvina: To be a caregiver. That’s different. So to be a caregiver.

Tina: Exactly. Exactly. And to be a caregiver in a pandemic when no one else can care for your people, right? I mean, seriously, not even a thing.

Elvina: Yeah. Those concessions haven’t changed at all. Even in a pandemic.

Tina: Our family voice will continue to be heard and hopefully now that you’ve elevated this, other parent voices, other people will be able to raise your voice and their voices to help people understand this. So, you also mentioned, not in this, in a previous conversation about the challenges that your family faces from time to time with microaggressions. Can you tell us a little bit about your experience with that?

Elvina: Yeah. Microaggressions I knew of before becoming a parent to Colby in terms of racism and sexism. And it took me a while to see that’s what I was seeing, that’s what I was hearing and having these really visceral reactions to was Ableism. There’s these really, really common microaggressions made against people or the families of people with disabilities that boils down to ableism. But like I said about work there’s almost this daily spoken and unspoken question about why Craig and I don’t work outside the home. Like if we, you know, really wanted to, we could still have jobs and careers and take care of Colby. I feel angry and defensive about that, but I let it go pretty quickly at this point because people don’t get it. There is no representation for the work of taking care of a human being like Colby, so if you’re not living it, I don’t, I really don’t think it’s possible to imagine it. I try with my writing, but I just, I think I can give people maybe a moment of feeling something, but to really comprehend it, I don’t know that we can really do that so much with really complicated situations that are different than ours.

I have lost relationships with people I loved because of ableism. People who say things like Colby is holding me back from living my life. Some of that hasn’t been micro, it’s been actually aggressive. But, you know, they didn’t know. They hadn’t processed their ableism to even question their beliefs. And I didn’t have it in me to teach them, and it’s not my job to teach them. But that has been hard, you know, losing people or having to let go of people because even while they, and I really believed they loved Colby, they didn’t respect the validity of her life and therefore, the work of her care.

And you know, I think it boils down to able bodied people assume that a disabled person wishes they were like them. The concept, you know it’s very much like racism, it sort of boils down to a white person assuming a black person wants to be white. The concept of dignity and fulfillment within disability, culturally, we just, we don’t have that.

Serena: I really appreciate you sharing that with us and I do think it’s important for our listeners to hear about your every-day experiences and maybe understand just a little bit of your world. And we know from experience that no one truly can walk in anyone else’s shoes, right? I mean, we don’t, we don’t ever know what’s going on in anyone else’s life, but I think the more we talk about it, the more people understand. So, as we say on our website and throughout our podcasts, parenting is hard. Period. End of sentence. And yet we find ourselves thinking about things we have learned along the way and how we might pay some of that forward. So, tell me, what gifts has Colby given you? What has she taught you?

Elvina: Yeah, you know, Colby has made everything better. Like, not like, oh, everything’s better now, but just elevated the quality of every moment of every day. For me, I think the big transition was letting go of what I thought success was gonna look like in my life and as soon as I could let that go and just look at this magnificent human being and go from there, everything has been better. But basically I would say she’s taught me to be myself. She is unselfconsciously herself. And it’s amazing to be in the presence of that, to experience, you know, day in and day out a person who is who they are. Period. Like, no low self esteem, no shame, no internalized sexism or racism. Like, none of it. Like she is pure being and we can touch that. I don’t think I’m capable of being in the moment the way Colby is, but I can touch it by being present with her.

But it took a long time to surrender the trajectory of success that I had been really invested in. And you know, the other thing she’s taught me is about respecting my body and its, just sort of, animal needs for rest and connection, nutrition, new experiences. For me that’s meant accepting myself as an artist and a writer, something I used to put a lot of effort into denying or kind of subjugating into other safer feeling careers. I feel like it’s one extreme, like an extreme in one area of life leads to another. I can’t coast with Colby. With her I sort of woke up to like what’s actually important and to survive the emotional and physical and spiritual, like, intensity I had to really decide if I was all in or not. And if I’m all in, well, there’s like a fearlessness to that as you’re just committed. And that’s, you know, she’s committed to the moment, so she’s taught that sort of fearlessness. But it’s different somehow than brave. She just is who she is and she’s not holding that in comparison to anything else which is really, I’d lived my life in comparison. That was the only kind of channel I had.

Tina: Mmhm. Yeah, totally hear that. I think a lot of us live like that, for sure. So, important life lessons to be yourself and to embrace the fearless which is awesome. Amazing gift. In an episode a few weeks ago we talked about having a Self-Care Revolution. Give us your take on self-care, maybe how you used to think about it and how self-care has changed for you.

Elvina: Well, I’m all for people taking care of themselves obviously, but I do think that we use the idea of Self Care often in our culture in a way that’s Toxic Positivity with another mask on.

When Colby’s seizures started, she was a baby and I was still in New York City and I was just a complete mess. And, you know, friends, people would say, you know, “you really need to do something nice for yourself.” I’d be on the heels of another epic, you know, three weeks in the hospital or something. “You should go get a manicure.” And I would just sort of feel like, “Yeah, you know what, I just really don’t think a manicure is going to cut it.I don’t think that’s going to work any more.” You know, it used to after having a hard day at work. It was the beginning of feeling the sort of dissonance, which I did not have words for then, the dissonance between the message of toxic positivity - it’s up to me to feel better. I’m in this crisis situation with my infant. My life is going completely off the rails, but I am the one who has to fix it by doing some “self-care”. And the reality, which is, the system is failing me. I don’t have any support. I’m terrified and it’s not something I can fix by myself. So self-care and toxic positivity have that in common where it’s like, you feel bad, it’s up to you to fix yourself when often it’s a much bigger system that actually needs to change. Not a manicure.

So, you know, the other piece is that, moving forward in the last 15 years since the manicures stopped working, you know, caregiving is just hard on your body. So I think things like massage and working out that for some people is just like, extra or special. I think for us, they’re really basic necessities. I think, I’m an athlete so I think a lot about how, you know, athletes treat their bodies. Like good nutrition and massage and things that, you know, we could call self care. They’re not self care. If you’re relying on your body in that way, it’s part of what it takes to do your job, to perform well and not get hurt and have a long career.

So, you know, I don’t really want to look at self care as like a separate thing on my to do list that I could fail at or something. You know, not do and therefore not feel good. I want a whole life that is self care, but that has meant huge sacrifices and habit changes that are not a product of the self care market. To really prioritize your wellness, I think, goes against our kind of, capitalist notions of consumable happiness. And a whole life that is of care includes, you know, the total devotion with which my husband feeds our family. He spends hours and a significant part of our family budget to the wellness of our family through what he cooks for us every day. And much of that, actually has been directed by Colby’s intelligence. Like, she’s not going to eat chicken fingers every day. And she’s got like the best diet of anyone you’ve ever met and it’s not because we’re like, so great and wonderful and thinking about her nutrition. It’s her. Like, she’s the one who said, I don’t want chicken fingers, I want sardines. She has an incredibly good diet. of what we taught her. She showed us through her enthusiasm and refusal what she liked and it’s interesting to think about from her intelligence because she doesn’t have a marketable mind, she can’t be advertised to want something. She only listens to her body. And to me, that’s like the highest order of Self Care. Are you listening to your body? It’s like that Mary Oliver quote to, “let the soft animal of your body love what it loves.” That’s what Colby does. And so, I try to do that too. It looks like self care but it is much more than that. It is respecting your life. And as some of my favorite poets are always saying, like Ellen Bass, You are going to die after all so you might as well enjoy what you know helps you savor this life.

Serena: Mmm. That’s beautiful. Thank you for sharing that. I love that idea of a life “of care”, rather than thinking of it as self-care. So, we hear that you have a book in the works and that’s really exciting! I know you’ve done a lot of writing over the years. Writing is something that Tina and I dabble in a little bit and it certainly helped us process in a number of different ways. So, tell us about what writing does for you.

Elvina: At this point, I try to write to share Colby’s life and for her strength to be witnessed and for the work to be witnessed. Like we’ve been saying, you know, caregiving is such invisible and undervalued work, part of me just wants to scream on the page, “Look, I’m working my ass off! To keep this vulnerable human being alive! Don’t ask me ‘what else do you do?’”

And I want to be radically honest about how hard it is as well. In general I think a lot of our loneliness is because we haven’t shared our darkness. The agony of seeing your child suffer, of seeing life go totally off script in a way you didn’t choose. You know, it’s hard.

Tina: Hmm. Yes. Hard. And I love the quote! “A lot of loneliness is because we haven’t shared our darkness.” Yeah. So, might you read to us an excerpt from your writing that might illustrate what you’ve just said?

Elvina: Sure. I just wrote something about a moment. This is an early draft. I’ll just, I’ll qualify it. But it was a moment. As I’ve been writing about Colby, I’ve been remembering all these extraordinary people she’s brought into our life. I think that’s the other gift of having a kid like Colby. There are some amazing people in this world like you two that I wouldn’t know without her, you know?

In early spring, just after Colby’s second birthday, I was in the SPOTS waiting room. (SPOTS was a very fancy occupational therapy gym on Broadway) I was on the verge of tears, as usual. Prudence, the owner and head therapist, looked at me for an extra moment after we said hello and invited me to come in and have a chat in her office. She was Australian and said things like, “come have a chat,”. She was warm and regal.

I told her that Dr. Pappas, the geneticist at New York University, had taken what looked like gallons of blood from Colby’s pudgy arms to test for another round of syndromes. The craving for an explanation for Colby’s health problems was still strong. Any one answer to orient my expectations around, I needed. The main two syndromes he was looking for meant a life expectancy around four years.

Prudence asked me how many children Craig and I had planned to have before Colby was born. I told her two or three. Looking down at her folded hands, she said “I think you should try and have another child. Have another child, so you can have the parenting experience you were expecting to have.”

The parenting experience we were expecting to have. Expecting to have. Everything went quiet in my mind. The love. The desire for a healthy child. The fear Colby would die suddenly from a seizure, or on the known timeline of a syndrome. The very secret, shadowy relief I might feel if she did die. These were the loud and cacophonous and constant feelings doing battle in my heart and mind every moment. I’d never considered or been told that what I might be feeling was grief.

She was still alive, what right did I have to grief? The distinction between loving Colby for who she was and grieving the child I had expected to have, the child everyone expects when you dream about a family, I could not have arrived to this idea on my own. Prudence’s words freed something immediately: I could love Colby, and grieve the child I did not have. Without it being a grief for who Colby was. I did not grieve who Colby was. I wished it weren’t happening, but I loved this child, I wanted this child too.

Serena: Mmm. That is so powerful. Thank you for sharing that. Wow, it’s hard to follow that. So I think something that Tina and I talk about a lot is the journey for all of us in parenting and wisdom we gain along the way. So, as we wrap this up, what is something that you can share with other parents who are listening that you wish you had known earlier in your journey?

Elvina: Oh, well, I think I knew it, but I didn’t do it, which is to ask for help and to accept help. It feels overwhelming to get people hired and trained to help, but the push of energy to get it going yields exponentially. It is very, very hard to find good people and the turnover is an issue. But it is still worth it. Having other people in your child’s life is good for everyone. And when they come, I still tell myself even in a pandemic when we don’t have that much help, LEAVE THE HOUSE! Go do anything. When Colby was little I would go sit by the lake and cry. Even that was a good use of time. I couldn’t do that when the girls were in the car.

But I still have to be sort of bossed around and almost tricked into accepting help. Like meals around surgeries, financial help, fundraisers, it still feels like peeling my own skin off to accept. The stubbornness of that learned shame for needing other people. That there is like something wrong with us if we need help. So I would advise what I try and do myself which is to take little steps to let that stuff go. You know, we all know by now that it’s scientifically proven in our brains that generosity is enormously satisfying. You know, don’t deny people the opportunity for generosity. People who love you and empathize with you, even if they don’t understand your life, they don’t want to see you survive, they want to see you well.

Tina: OK, so sorry, I have to stop you there and say, just say that last sentence again.

Elvina: That people who love you and empathize with you, they don’t want to see you survive, they want to see you well.

Tina: Absolutely. Absolutely.

Serena: Mmm. Elvina, thank you so much for sharing some of your well-earned wisdom with us today. I feel grateful to know you and I’m so glad you were able to join us.

Tina: I echo that. I feel like, since the day I met you that you are a force in the world. Someone who has been given an unexpected path and has been able to not only reflect but think about the larger looming issues in this complicated world. And with that, we would always welcome you back anytime and especially when you publish that book you are writing! You are an amazing writer. You are an amazing artist. You are an amazing mom, an advocate and so very much more. So, thanks for joining us today.

Elvina: Thank you so much, Tina and Serena, thank you. I really am honored to be here. I think what you’re doing, first of all I’m just intensely impressed at, with the lives that you have and all the responsibilities that you have that you take the time to do this service. It’s really beautiful. Thank you.

Tina: And thank you again. So podcast friends, we are, and are always grateful for all of you for listening and supporting us. You can help us out by visiting Apple podcasts, leaving us a review, subscribing and sharing with others.

Serena: And this is your gentle reminder to take good care of yourself while you are also taking care of your people.

Tina: Thanks again for listening!

Serena: Bye!

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