In this series, guest writers share about their experiences with chronic illness and disability, and how their health affects their relationship to life and death. Today we speak with international-penpal-collaborators-turned-wives, Becca De La Rosa and Mabel Martin, who together create an ongoing fiction podcast called, ‘Mabel’. The story of ’Mabel’ is about ghosts, family secrets, strange houses, and missed connections; richly spoken in decadent and mysterious terms. There are secret codes and hidden riddles to find and solve, an interactive Patreon community (join it and you may just find strange artifacts begin to arrive on your doorstep), and an engaged fandom whose stunning fan art reflects the quality of the source material Becca & Mabel are creating.
Mabel and Becca - would you introduce yourselves? What are you passionate about? How do you identify (what are the terms you use to describe yourselves and your condition)?
MABEL: My name is Mabel Martin. I co-run a podcast called ‘Mabel’ along with my wife. I’m a writer, a singer, a voice actor, a mixed-media artist, and I spend a lot of time working on my particular path of magic.
I don’t particularly like the term ‘identify’, due to cultural objections, but I think of myself as and know myself to be disabled, both in the sense of “lack of ability”, and also in the sense of the etymological root of “disable” as a word that means “destroy the capability of”. I lack the ability to experience the world through a linear or painless perspective. And the fact of my existence destroys complacency with its dominion of suffering. I am a constant reminder of the presence of pain to the world that would rather ignore it.
BECCA: I’m Becca – I’m a writer, singer, artist, voice actress, and co-creator of the podcast 'Mabel'. I consider myself physically disabled; I walk with a mobility aid, and it is often one of the first things people notice about me. I’m also chronically ill with various health conditions.
Mabel, I‘m interested in your dislike for the term ‘identify’. It’s the only way I really know how to ask about how people define themselves and how to refer to them. It’s not just about their pronouns or if they call themselves disabled or not - I ask this question because I believe identity is bigger than that; it is also roles we choose like artist, advocate, writer, friend. When focusing on people’s disability in these pieces, I don’t want to reduce people down to their illness or disability but show it as part of their whole. Would you elaborate?
MABEL: My mild dislike of the term “identify” is because I am very strongly enmeshed with my ancestors’ conceptions of what I suppose could be called the ‘soul’ – they and I view the construct of the self as a simultaneous permanent and impermanent creature, composed of many parts that disseminate and transmute upon death. Even in their mysticism, my ancestors were pragmatic, and the modality of “identifying”, with its roots of “identical to”, is a bit flimsy compared to objective knowledge, of what I know myself to be. Hopefully that makes sense.
Absolutely - thank you for explaining. Would you both tell us about your disease, impairment, or condition; and what that‘s like for you?
BECCA: I have Ehlers-Danlos Syndrome, which led to my permanent knee injury. My joints don’t want to stay in place, and I fell while chasing after a dog when I was 24 years old. This injury is the reason I have degenerative osteoarthritis and need a cane to walk. My other, less-incapacitating conditions include PCOS, polycystic ovarian syndrome, triggered when I was subjected to periods of starvation as a teenager.
MABEL: I have an atypical presentation of cluster headaches, sometimes known as “suicide headaches”, along with an atypical presentation of vasovagal syncope. The cluster headaches are so-called because they occur in clusters, but when I first heard the name I pictured a cluster of jeweled grapes behind the soft vitreous of my eye, sharp and growing into my nerves like ivy. It’s not an inaccurate image. Cluster headaches cause near unbearable bursts of pain in odd patterns, sometimes decipherable, sometimes not, but usually centered around the eye on only one side of the face. The pain of it has been compared to icepicks, white-hot drills, knives. I personally prefer the image of my gemstone grapes. Sometimes the pain attacks they cause are associated with seasonal changes, which I think is rather esoteric of them.
The vasovagal syncope is more straightforward: it means I pass out, throughout the day, sometimes many times, sometimes few or none at all. It is atypical because I don’t have any particular triggers for it or any warnings, like the visual disturbances or ringing in the ears that are common. It is also atypical because vasovagal syncope usually does not last as long as my case has – at this point, almost half my life. I frequently have episodes throughout the day, twelve years after a diagnosis.
How does that affect your day-to-day life?
MABEL: The syncope means I am never quite as sure about the solidity of my body as other people might be. I move in and out of myself like a ghost. It is not safe for me to do a lot of what other people might consider “normal” things, for example driving a car. I went to a boarding school in a rural area, and I injured myself simply by going on walks in isolation and having an episode. The idea that I could not even be outside, especially in a forest or near the sea, was infuriating to me, because I am much more at home in nature than away from it, and for a long time I was filled with a deep sense of rage.
The clusters mean that every day is a waiting game of whether or not I will endure terrible pain. This, also, used to infuriate me. Now I keep the rage tucked inside me like another jewel, to use when it might help me accomplish something. I do not edit my feelings about what I experience. When I am in pain, I will try and dive into it, let it wash over me fully like a dark ocean. If I want to be spontaneous about something, I do so with the knowledge that my skull might strike me down at any moment. We are at war, myself and it, but it is a friendly one, now, and we learn things from one another.
BECCA: With my knee injury, the biggest effect it has is my limited mobility. I work very hard to be able to get around as much as I do, and although my abilities have increased with a huge amount of dedication and effort, every day I am in a certain amount of pain. I have to leverage certain activities against each other (if I make this meal, I won’t be able to stand up to shower later, etc). I have a collection of canes that I work to make as beautiful and sacred as possible, because I strongly believe that mobility aids, and physical aids of all kinds, should be as aesthetic and as individualised as any other kind of physical accessory. My first cane was covered in stickers and patches; for our wedding, I walked with a cane inlaid with mother-of-pearl; I have a beautiful wooden cane carved in the shape of a horse, a cane with a pattern of dragon-scales that I blessed in a holy well, and one I painted myself, covered in Mexican alebrije figures. This is an important part of my sense of self, the refusal to deny myself beautiful things, especially things necessary to my disabled existence.
With EDS, it really does come down to micromanagement. Some days are better than others; my body always hurts, in some way, but at times it’s just something I laugh about (I sneezed and my ribs popped out of place again!) and at other times it’s more pressing. The same way that’s true for many people with EDS, our house is well-stocked with ice packs, arnica, painkillers, and tiger balm. I take a lot of supplements (my wife is a genius at research) and have a very particular diet. Now and then none of this is enough, and I have to spend a few days in bed.
How do your diagnoses and/or conditions affect your relationship with death?
BECCA: I have always been a little bit in love with death. Even before I was diagnosed with anything, I collected ghost stories, Victorian mourning brooches, and animal bones. Our spiritual and religious beliefs have shown us, again and again, that death is not an ending. I don’t find death, in and of itself, particularly sad; I acknowledge and respect it and love it as an unknown and unpredictable journey, just as life is an unknown and unpredictable journey. Knowing that I have chronic illnesses, and degenerative conditions, that might ultimately affect the length and quality of my life, has not actually changed my opinion about death very much. I make an effort to live in a way that I won’t regret, in the end, and to be empathetic to every part of the process. Both in myself and in others.
MABEL: The first time I had an attack, I was a teenager. I thrashed on the floor of a hospital like a penitent speaking in tongues; the language was agony. They took me in for some kind of scan, I don’t remember which. I was not quite conscious. I truly did believe I was dying. I believed it more when they injected morphine into my spine – the nurse’s face was a mask of terror, just a lump of flesh with two eyes. I found out later that my pain was affecting me so badly they initially thought my brain was swelling.
I am mixed indigenous Mexican; this is relevant because my culture has, from the time I was younger, taught me that death is a friend, a confidante, a real and living creature full of beauty, not a sterile thing to raise one’s fist against. I do not fear death. My pain, and my darkness, the sleepless sleep that consumes and devours me at its will, have shown me that I will die, which I think most people would rather not dwell on. But I confront it as a fact, a precious fact that ties me to my relatives the quetzals and butterflies and seals. To me, it is not morbid or cruel. Death is a beautiful, transcendental fact of life, one without which we could not inhabit this garden of a planet.
I also do not view death as an end, either of joy or suffering, but simply a continuation of matter in a transformed state. This is due to the wisdom of my culture, but also my pain and darkness.
Becca, you mentioned that your shared experience of disability informs both the content of the work you make together and the ways in which you perform it. Could you both share about how do your diagnoses and/or conditions affect your relationship to the imagination and story that you weave into ‘Mabel’?
MABEL: The titular character of Mabel is an extension of myself in more ways than one. I allow her room to rage and scream and express her pain as an offering to my previous self; I was doubted quite a bit when I received both my diagnoses. I was also blamed for them, and accused of faking, because disability and pain scares people. I don’t want that for anyone, not even a metafictionalized character, so I make sure that the story allows space for frank and honest talk of pain and suffering, in whatever context the one going through it actually desires.
I also ensure that both my wife and I have space to speak about our disabilities with the context we desire to give them. I have been discouraged and screamed at and fought over the way I speak of my own experiences, because sometimes it makes people, especially if they’re abled, uncomfortable to think that I am not either acting as a saccharine inspiration or a wailing victim. But I do not exist to be anyone’s inspiration or cautionary tale. My autonomy over my self, my body, my tonalli, and my experiences is profoundly sacred. This, above all else, is important to the narrative in the podcast: the sanctity of self-rule.
BECCA: I have a very animistic understanding of imagination: I think the things artists make are alive, and important and worthwhile for that reason almost above all else. 'Mabel', the show, is alive. We have put an enormous amount of ourselves into it, in one way or another. Our protagonists balance between demanding freedom from oppression and understanding the necessity of the physical, with all its associated pain, as part of something beautiful, larger than any of us. This is something I try hard to balance, too. I don’t want to be disabled. I don’t want to be in pain, or have to be more delicate with myself than someone my age “should”. At the same time, I understand that pain is a commonality between all living things, and unites me with the rest of existence in unique ways. Co-creating 'Mabel' with my wife is a reminder that struggle, while not inherently honourable in and of itself – I’m not ever trying to romanticise suffering – can lead to remarkable new understandings of the world.
As a closing, I like to ask for a takeaway lesson for our readers. What is one thing you would like others to know or learn about interacting with someone with your condition?
MABEL: I can speak for only myself, but I believe no one has the right to tell me how I contextualize my own disabilities. It is my choice to decide the framework and context in which I will view myself, explain myself, and interact as myself with the world, to whom I owe no debt for this hagstone of suffering, or the mantle of darkness. Keeping in concert with that, far too many people have asked me if I’ve ever wanted to kill myself once they know about the cluster headaches. They should not have to be told this but do not do that. It passes from the amorphous area of rude into the neatly-defined edge of exceptionally unkind. And in this world, with its endless obstacles and cruelties, showing each other kindness is the only currency of value.
BECCA: I have two things! First: do not ever, ever touch someone’s mobility aid without asking their permission. These devices are often irreplaceable, at least when disabled people are out in the world, and are, in that context, as much a part of us as a limb. Too many people have taken my cane from me without consulting me first (especially on airplanes, or in restaurants).
And second: sometimes I just want to laugh about the nonsense my body causes me. Sometimes I want to call myself a cripple and not be chastised for it. Sometimes my humour is dark, and sometimes it makes able-bodied people uncomfortable. That is, in the end, not my problem. Disabled and chronically ill people need to be able to relate to their conditions on their own terms, no matter how that makes anyone else feel.
As the weather turns dreary and we face a long, grey season indoors, it is the perfect time to escape in our minds to somewhere far beyond the walls of our homes. Grab a cup of tea, settle in somewhere warm and be sure to check out the ‘Mabel’ podcast and learn more about Becca and Mabel’s work at https://mabelpodcast.com
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