Karrie Higgins medical expense
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Seeking $7,000 to cover medical expenses and assistive devices for disability activist and writer Karrie Higgins as she prepares to start her doctoral program in Intermedia Art, Performance, and Writing.
Karrie’s most recent piece Prince and the Sparkle Brains: growing up epileptic, surviving sexual abuse, and loving Prince went viral, generating over 40,000 views on her blog plus reprints in HuffPost and cahoodaloodaling , and hundreds of email responses from fellow Sparkle Brains telling Karrie the piece made them feel understood and loved. This is the work she loves: disability poetics, revealing the beauty and sparkle of her neurodivergence.
At the same time, neurodivergence comes with a high cost: As a person with Temporal Lobe Epilepsy, partial deafness, Central Auditory Processing Disorder, tinnitus, and Chiari Malformation, Karrie faces high costs for medical care and housing accessible to daily needs. She also faces costs documenting her disabilities and receiving assistive devices to make her PHD program accessible.
Assistive Devices
Partial deafness means Karrie not hear high-frequency sounds , in which crucial portions of human speech and many voices (especially women’s) fall. Even with a discount through my work benefits, her Phonak Audeo V hearing aids cost $5,400 for the pair. She could not be fitted with a lower-end model as they would not assist with the high frequencies, and the audiologist felt she would only be pouring money down the drain.
Because of her Central Auditory Processing Disorder, it is especially delicate to the get the hearing aids just right. CAPD is like dyslexia except with sound. Karrie’s brain jumbles sounds, has trouble making sense of them, and does not rely on her auditory system the way others do. The wrong hearing aids would potentially cause her even more troubles. While hearing aids will not resolve CAPD, they may take some of the exhaustion and stress away. CAPD + partial deafness creates greater confusion and challenges with learning and communicating.
Unvoiced sounds like s as in “Snake,” the K in “Karrie,” P as in “Prince” and T as in “Trance” had diminished to the point Karrie had to guess on a lot of what was said. She was often met with anger from people who did not want to repeat what they said or who got frustrated when she failed to respond. She withdrew socially and rarely ventured into situations where she would have to understand someone speaking in noise.
The day she got the hearing aids, she stood under a tree listening to birdsong. “I have never heard it like that!” She could distinguish one bird’s song from another, chirps bursting from the trees in three dimensions.
This weekend, when thunder rolled in and the drip-drop of rain started, she wanted to open the windows because she was hearing sounds she hadn't heard before.
Every day, when puts in her hearing aids, she says sssssssss ssssssssssss ssssssss over and over, pure pleasure of saying the sounds and hearing her mouth produce them.
She can detect direction of sound at times—something she was unable to do previously.
I DID NOT KNOW THAT SOUND WAS A THING! She exclaims with joy, as she tilts her head and listens to something other people probably take for granted.
We expected the hearing aids to bring her a little more sound, but we did not expect them to bring her joy. We did not expect them to open up her whole world.
In fact, partial deafness is linked to depression among other conditions due to the social isolation it can create. Even still, insurance does not cover hearing aids. Karrie does not qualify for other reimbursement programs.
She has a trial period, but she knew the minute she stood under that tree that she wanted to keep them. To her, they are already part of her body. She gets anxious when she takes them out.
And yet, she is considering returning them because of the cost. $5400 is a lot at any time, but it’s especially hard for us right now.
We are about to move to Boulder for her program, where I will face a period of unemployment. We will lose our insurance for about a month or take on a basic plan that likely will not cover most of what Karrie needs.
Medical Testing
In addition, Karrie has been facing a battery of expensive neurology tests, as several of her conditions have worsened.
She completed balance testing, which confirmed her dizziness is neurological and not vestibular. After a neurological examination that revealed some new issues she will need a Cine MRI, new EEG (due to recent seizures), and a referral to a neuro-ophthalmologist.
Karrie was also started on a new epilepsy drug which appears to be the holy grail for her: it does not cause some of the horrendous side effects that have diminished her quality of life—or as she likes to put it, stolen the shine from the disco ball. It is, however, expensive and not covered well by insurance. Should we run into financial difficulty, there is a chance she will not be able to pay for it, and seizures would inevitably follow, leading to further neurological problems—a vicious cycle.
She has also been visiting all her doctors one by one to obtain documentation necessary to obtaining accommodations. Each visit has a $40 copay and often fees for various updated tests.
Karrie is a recognized and respected writer who addresses diverse content in her work: sexual abuse, disability poetics, the challenges and joys of having a magical worldview, and she brings her work together with poetry and insight. The quality of her work has been recognized through two notables in Best American Essays, winning the Cincinnati Review 2013 Schiff award for prose, becoming a columnist for the Huffington Post and her acceptance to the Doctoral Program in Intermedia Art, Writing and Performance at UC Boulder.
Only 15% of epileptics even get a BA. Karrie has earned her MFA and wants to break barriers for neurodivergent scholars and artists. Without her medical care, medications, appointments to document her disabilities, and disability aids, it may not happen.
We are asking only what we have paid in medical costs. If you are unable to donate, please share and promote the campaign among your network. Thank you.
Karrie’s most recent piece Prince and the Sparkle Brains: growing up epileptic, surviving sexual abuse, and loving Prince went viral, generating over 40,000 views on her blog plus reprints in HuffPost and cahoodaloodaling , and hundreds of email responses from fellow Sparkle Brains telling Karrie the piece made them feel understood and loved. This is the work she loves: disability poetics, revealing the beauty and sparkle of her neurodivergence.
At the same time, neurodivergence comes with a high cost: As a person with Temporal Lobe Epilepsy, partial deafness, Central Auditory Processing Disorder, tinnitus, and Chiari Malformation, Karrie faces high costs for medical care and housing accessible to daily needs. She also faces costs documenting her disabilities and receiving assistive devices to make her PHD program accessible.
Assistive Devices
Partial deafness means Karrie not hear high-frequency sounds , in which crucial portions of human speech and many voices (especially women’s) fall. Even with a discount through my work benefits, her Phonak Audeo V hearing aids cost $5,400 for the pair. She could not be fitted with a lower-end model as they would not assist with the high frequencies, and the audiologist felt she would only be pouring money down the drain.
Because of her Central Auditory Processing Disorder, it is especially delicate to the get the hearing aids just right. CAPD is like dyslexia except with sound. Karrie’s brain jumbles sounds, has trouble making sense of them, and does not rely on her auditory system the way others do. The wrong hearing aids would potentially cause her even more troubles. While hearing aids will not resolve CAPD, they may take some of the exhaustion and stress away. CAPD + partial deafness creates greater confusion and challenges with learning and communicating.
Unvoiced sounds like s as in “Snake,” the K in “Karrie,” P as in “Prince” and T as in “Trance” had diminished to the point Karrie had to guess on a lot of what was said. She was often met with anger from people who did not want to repeat what they said or who got frustrated when she failed to respond. She withdrew socially and rarely ventured into situations where she would have to understand someone speaking in noise.
The day she got the hearing aids, she stood under a tree listening to birdsong. “I have never heard it like that!” She could distinguish one bird’s song from another, chirps bursting from the trees in three dimensions.
This weekend, when thunder rolled in and the drip-drop of rain started, she wanted to open the windows because she was hearing sounds she hadn't heard before.
Every day, when puts in her hearing aids, she says sssssssss ssssssssssss ssssssss over and over, pure pleasure of saying the sounds and hearing her mouth produce them.
She can detect direction of sound at times—something she was unable to do previously.
I DID NOT KNOW THAT SOUND WAS A THING! She exclaims with joy, as she tilts her head and listens to something other people probably take for granted.
We expected the hearing aids to bring her a little more sound, but we did not expect them to bring her joy. We did not expect them to open up her whole world.
In fact, partial deafness is linked to depression among other conditions due to the social isolation it can create. Even still, insurance does not cover hearing aids. Karrie does not qualify for other reimbursement programs.
She has a trial period, but she knew the minute she stood under that tree that she wanted to keep them. To her, they are already part of her body. She gets anxious when she takes them out.
And yet, she is considering returning them because of the cost. $5400 is a lot at any time, but it’s especially hard for us right now.
We are about to move to Boulder for her program, where I will face a period of unemployment. We will lose our insurance for about a month or take on a basic plan that likely will not cover most of what Karrie needs.
Medical Testing
In addition, Karrie has been facing a battery of expensive neurology tests, as several of her conditions have worsened.
She completed balance testing, which confirmed her dizziness is neurological and not vestibular. After a neurological examination that revealed some new issues she will need a Cine MRI, new EEG (due to recent seizures), and a referral to a neuro-ophthalmologist.
Karrie was also started on a new epilepsy drug which appears to be the holy grail for her: it does not cause some of the horrendous side effects that have diminished her quality of life—or as she likes to put it, stolen the shine from the disco ball. It is, however, expensive and not covered well by insurance. Should we run into financial difficulty, there is a chance she will not be able to pay for it, and seizures would inevitably follow, leading to further neurological problems—a vicious cycle.
She has also been visiting all her doctors one by one to obtain documentation necessary to obtaining accommodations. Each visit has a $40 copay and often fees for various updated tests.
Karrie is a recognized and respected writer who addresses diverse content in her work: sexual abuse, disability poetics, the challenges and joys of having a magical worldview, and she brings her work together with poetry and insight. The quality of her work has been recognized through two notables in Best American Essays, winning the Cincinnati Review 2013 Schiff award for prose, becoming a columnist for the Huffington Post and her acceptance to the Doctoral Program in Intermedia Art, Writing and Performance at UC Boulder.
Only 15% of epileptics even get a BA. Karrie has earned her MFA and wants to break barriers for neurodivergent scholars and artists. Without her medical care, medications, appointments to document her disabilities, and disability aids, it may not happen.
We are asking only what we have paid in medical costs. If you are unable to donate, please share and promote the campaign among your network. Thank you.
Organizer
Alan Murdock
Organizer
Salt Lake City, UT
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