Help Willow Afford Neurological Treatment!
Donation protected
Hi everyone—my name is Willow Naomi Curry. I’m a 24-year-old Black woman writer, multidisciplinary artist, and native Houstonian who has been a prolific member of the arts community in Houston, Texas for 10 years. I’ve designed for charity fashion shows, conducted community writing workshops, and I’m currently working on a photography exhibition centered on Houston’s historic Fourth Ward and serving as the first writer to be chosen as the Artist-in-Residence at the Houston Museum of African American Culture.
In addition to being an artist, I’m also an advocate for cultural and community development in Houston, particularly for communities of color. I work on the Kashmere Gardens Neighborhood Support Team for the mayor’s Complete Communities initiative, and I work to support Houston’s young future Black artists and cultural workers across communities through mentorship. All of this work is both fulfilling and necessary.
However, since my 2016 diagnosis with psychogenic dystonia, a rare neuropsychological disorder, I’ve had to do so while enduring tremendous pain and difficulty with eating and speaking. And that pain is getting worse.
My dystonia stayed relatively manageable for much of 2018 and 2019. But since the end of 2019 and into 2020, the severity of my condition has increased, especially after a tooth injury in the summer of 2019. The treatment that I’ve been given since 2016, a daily oral medication, has been slowly losing its efficacy, leaving me incapacitated for at least 50% of the time—and without 50% of my income. My physicians agree that Botox treatment + dental surgery is the next option and possibly the final option, with the continued support of neuropsychological therapy. Over the years I’ve seen general neurologists, specialized movement disorder neurologists, speech & swallowing therapists, rheumatologists, TMJ specialists, oral pathologists, and a host of mental health professionals doing their best with different approaches to treat the little-understood phenomenon of psychogenic neurological illness. I’ve spent thousands of dollars on diagnostic tests, hospital visits, and doctors appointments. All they can offer are very few treatment options for a very rare form of dystonia.
Unlike many people my age, I’m parentless, having lost both my mother and father to cancer. Their deaths were most likely due to exposure to creosote as a result of living in Kashmere Gardens, which was identified last year as a cancer cluster. I’ve shared my story with various news outlets and political campaigns to advocate for my home neighborhood and I will eventually be part of a class action wrongful death lawsuit against Union Pacific, the contaminating company. But no amount of activism will guide me through her own health struggles, or support me in the event of total incapacitation. I’m facing these challenges alone, with no safety net to fall back on. I’ve paid for my own health insurance and medical costs since the age of 18, and my cost of living since age 21. I’ve always found a way to make it work, but without substantial financial help now, I cannot keep that up.
As of this month, I’m facing near-total incapacitation, and I’m making the difficult decision to withdraw from most work commitments and file for different types of government benefits. While I navigate those systems, I hope to raise money for essential treatment (much of what I need is not covered by any affordable insurance), a year of medical spa treatment (my doctors have tried to prescribe medical massage but insurance will not cover it), and three months of income replacement. With your contribution, I will be able to get treatments I have put off for months or years due to affordability, and I will be able to undertake my personal artistic practice and support Houston communities without having to push through overwhelming pain and limited function. Most importantly, I’ll have a chance at a better quality of life.
Breakdown of expenses:
Botox therapy: $900 per injection, 3 injection treatments = $2700 Dental surgery: $7000 (see why I put it off for a year and a half?) Specialist doctor visits, $300/visit, estimated 4 visits in the coming year = $1200 Therapy, $100/session for 4 months = $1600 Year-Long Medical Spa Membership = $1000 Income replacement/rent assistance for 3 months = $3000 Total: $16,500
In addition to being an artist, I’m also an advocate for cultural and community development in Houston, particularly for communities of color. I work on the Kashmere Gardens Neighborhood Support Team for the mayor’s Complete Communities initiative, and I work to support Houston’s young future Black artists and cultural workers across communities through mentorship. All of this work is both fulfilling and necessary.
However, since my 2016 diagnosis with psychogenic dystonia, a rare neuropsychological disorder, I’ve had to do so while enduring tremendous pain and difficulty with eating and speaking. And that pain is getting worse.
My dystonia stayed relatively manageable for much of 2018 and 2019. But since the end of 2019 and into 2020, the severity of my condition has increased, especially after a tooth injury in the summer of 2019. The treatment that I’ve been given since 2016, a daily oral medication, has been slowly losing its efficacy, leaving me incapacitated for at least 50% of the time—and without 50% of my income. My physicians agree that Botox treatment + dental surgery is the next option and possibly the final option, with the continued support of neuropsychological therapy. Over the years I’ve seen general neurologists, specialized movement disorder neurologists, speech & swallowing therapists, rheumatologists, TMJ specialists, oral pathologists, and a host of mental health professionals doing their best with different approaches to treat the little-understood phenomenon of psychogenic neurological illness. I’ve spent thousands of dollars on diagnostic tests, hospital visits, and doctors appointments. All they can offer are very few treatment options for a very rare form of dystonia.
Unlike many people my age, I’m parentless, having lost both my mother and father to cancer. Their deaths were most likely due to exposure to creosote as a result of living in Kashmere Gardens, which was identified last year as a cancer cluster. I’ve shared my story with various news outlets and political campaigns to advocate for my home neighborhood and I will eventually be part of a class action wrongful death lawsuit against Union Pacific, the contaminating company. But no amount of activism will guide me through her own health struggles, or support me in the event of total incapacitation. I’m facing these challenges alone, with no safety net to fall back on. I’ve paid for my own health insurance and medical costs since the age of 18, and my cost of living since age 21. I’ve always found a way to make it work, but without substantial financial help now, I cannot keep that up.
As of this month, I’m facing near-total incapacitation, and I’m making the difficult decision to withdraw from most work commitments and file for different types of government benefits. While I navigate those systems, I hope to raise money for essential treatment (much of what I need is not covered by any affordable insurance), a year of medical spa treatment (my doctors have tried to prescribe medical massage but insurance will not cover it), and three months of income replacement. With your contribution, I will be able to get treatments I have put off for months or years due to affordability, and I will be able to undertake my personal artistic practice and support Houston communities without having to push through overwhelming pain and limited function. Most importantly, I’ll have a chance at a better quality of life.
Breakdown of expenses:
Botox therapy: $900 per injection, 3 injection treatments = $2700 Dental surgery: $7000 (see why I put it off for a year and a half?) Specialist doctor visits, $300/visit, estimated 4 visits in the coming year = $1200 Therapy, $100/session for 4 months = $1600 Year-Long Medical Spa Membership = $1000 Income replacement/rent assistance for 3 months = $3000 Total: $16,500
Co-organizers (2)
Willow Curry
Organizer
Houston, TX
Tessa Ehrman
Co-organizer