Therese Russo's Road to Recovery
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Eleven years ago my partner, Therese Russo, was afflicted with Myalgic Encephalomyalitis, more commonly known as Chronic Fatigue Syndrome .
Chronic Fatigue Syndrome affects an estimated 15-30 million people worldwide. Symptoms include, but are not limited to:
- Severe fatigue that is not relieved by sleep or rest
- Post-exertional malaise
- Difficulty thinking and remembering
- Dizziness
- Headaches
- Sore throat
- Problems falling asleep or staying asleep
- Orthostatic intolerance
- Muscle pain and aches
- Digestive issues
- Chills and night sweats
- Allergies and sensitivities to foods, odors, chemicals, or noise
It's a disease that is nearly impossible to diagnose, and that robs individuals of the ability to participate in the world.
I met Therese at Bard College where we were both undergraduate dance majors. She was studying at Bard on a full-tuition scholarship when she came down with a 105-degree fever, which led to crippling fatigue. She took a medical leave of absence from school and saw a number of doctors, all of whom told her everything was normal.
But everything was not normal.
She had gone from dancing 4-6 hours a day to being unable to get out of bed. She had to crawl to the bathroom, she was getting regular infections, and she wasn’t able to digest food.
She started looking outside of western medicine and started a course of treatment that included naturopathy, acupuncture, and environmental medicine. She was able to get her symptoms under control enough to return to school, but her body never fully recovered and she had to stop dancing.
Forced to radically re-envision her future, she re-oriented her goals to serving others who were suffering. After three years working at the Meher Spiritual Center in Myrtle Beach, South Carolina, she applied to NYU Wagner’s School of Public Service to pursue a Master’s in Public Administration with a concentration in health care policy. That’s where our paths reconnected.
Two years into her grad program she was hired by New York City Health + Hospitals as the Health Equity Program Coordinator in the office of Diversity and Inclusion where she worked to train hospital staff on cultural and inter-religious awareness, LGBTQ+ inclusivity, and accessibility for patients who are deaf and hard of hearing, or have other unique communication needs.
This past spring as she was working full time at Health + Hospitals and finishing up her graduate degree she began to experience more frequent ME/CFS flare-ups and developed chronic migraines. She had begun seeing a CFS specialist here in New York who gave her co-diagnoses of Sjogren's Syndrome and POTS—Postural Orthostatic Tachycardia Syndrome.
POTS and ME/CFS are closely linked, though the relationship between the two isn’t fully understood. Many of the symptoms are similar, and the effect on patients is the same—people with both illnesses are essentially unable to participate in the world while they are afflicted.
One month after graduating Therese woke up and wasn’t able to get out of bed. After five weeks of unpaid medical leave, she still wasn’t well enough to return to work and was forced to resign from her job. She had been classified as a contractor rather than a full-time employee for most of her time at Health and Hospitals, which meant she wasn’t eligible for disability or other benefits.
By August she had seen a number of specialists—cardiologist, neurologist, infectious disease specialist, endocrinologist, gastroenterologist—none of whom were able to help.
She again began seeking help outside of conventional medicine including Dr. Jason Hao , a pioneer of a technique called neuro acupuncture, Tom and Susan Wolfe, certified herbalists in Ayurvedic medicine, and Dr. Nader Soliman , a practitioner of homeopathic medicine. These treatments have been helping, but they’re unfortunately not covered by health insurance.
It’s been a long road, but Therese is getting better. After 6 months she is about 40% improved. She’s now able to take short walks outside and do basic things around the house, but the health care practitioners she is seeing say that it could take another 3-9 months before she’s able to have her life back again.
We’ve been able to weather these first six months with support from our families, but she is still not well enough to work, and my non-profit salary is not enough to support us both until she’s better.
If you know Therese I don’t have to tell you that a sweeter, kinder, more generous person does not exist on this planet. She has spent the past two years making New York’s public health care system more inclusive, and she has a great deal more to offer the world. She just needs a little help. So we’re asking for it.
If you want to learn more:
What Happens When You Have a Disease Doctors Can't Diagnose
Unrest - a documentary about ME/CFS
What is POTS?
Video crediting:
Jennifer Brea, "What happens when you have a disease doctors can't diagnose," filmed June 27, 2016 at TEDSummit, Banff, Canada. TED video, 17:08, https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose/details.
Theo Sturz, "The Wedding of Carol Russo & Daniel Stone Part IV," YouTube video, 8:39, November 3, 2013, https://www.youtube.com/watch?v=xL4YkDReCGg.
New York City Health and Hospitals, "Partners in LGBTQ Health Care," YouTube video, 1:37, June 16, 2017, https://www.youtube.com/watch?v=GdtS8aKxkLA.
Evan Carter, "What is POTS? - Dysautonomia International," Vimeo video, 4:06, 2016, https://vimeo.com/187089086.
Dr. Jason Hao, "Acupuncture for Paralysis," YouTube video, 5:38, February 24, 2016, https://www.youtube.com/watch?v=-st02qJ76vs.
Music crediting:
Michael Wall, That Painting, 2017.
Michael Wall, Sha, 2014.
Michael Wall, South Ballad, 2004.
Michael Wall, Choir Only, 2004.
All music by Michael Wall available at https://soundformovement.com/music.
Chronic Fatigue Syndrome affects an estimated 15-30 million people worldwide. Symptoms include, but are not limited to:
- Severe fatigue that is not relieved by sleep or rest
- Post-exertional malaise
- Difficulty thinking and remembering
- Dizziness
- Headaches
- Sore throat
- Problems falling asleep or staying asleep
- Orthostatic intolerance
- Muscle pain and aches
- Digestive issues
- Chills and night sweats
- Allergies and sensitivities to foods, odors, chemicals, or noise
It's a disease that is nearly impossible to diagnose, and that robs individuals of the ability to participate in the world.
I met Therese at Bard College where we were both undergraduate dance majors. She was studying at Bard on a full-tuition scholarship when she came down with a 105-degree fever, which led to crippling fatigue. She took a medical leave of absence from school and saw a number of doctors, all of whom told her everything was normal.
But everything was not normal.
She had gone from dancing 4-6 hours a day to being unable to get out of bed. She had to crawl to the bathroom, she was getting regular infections, and she wasn’t able to digest food.
She started looking outside of western medicine and started a course of treatment that included naturopathy, acupuncture, and environmental medicine. She was able to get her symptoms under control enough to return to school, but her body never fully recovered and she had to stop dancing.
Forced to radically re-envision her future, she re-oriented her goals to serving others who were suffering. After three years working at the Meher Spiritual Center in Myrtle Beach, South Carolina, she applied to NYU Wagner’s School of Public Service to pursue a Master’s in Public Administration with a concentration in health care policy. That’s where our paths reconnected.
Two years into her grad program she was hired by New York City Health + Hospitals as the Health Equity Program Coordinator in the office of Diversity and Inclusion where she worked to train hospital staff on cultural and inter-religious awareness, LGBTQ+ inclusivity, and accessibility for patients who are deaf and hard of hearing, or have other unique communication needs.
This past spring as she was working full time at Health + Hospitals and finishing up her graduate degree she began to experience more frequent ME/CFS flare-ups and developed chronic migraines. She had begun seeing a CFS specialist here in New York who gave her co-diagnoses of Sjogren's Syndrome and POTS—Postural Orthostatic Tachycardia Syndrome.
POTS and ME/CFS are closely linked, though the relationship between the two isn’t fully understood. Many of the symptoms are similar, and the effect on patients is the same—people with both illnesses are essentially unable to participate in the world while they are afflicted.
One month after graduating Therese woke up and wasn’t able to get out of bed. After five weeks of unpaid medical leave, she still wasn’t well enough to return to work and was forced to resign from her job. She had been classified as a contractor rather than a full-time employee for most of her time at Health and Hospitals, which meant she wasn’t eligible for disability or other benefits.
By August she had seen a number of specialists—cardiologist, neurologist, infectious disease specialist, endocrinologist, gastroenterologist—none of whom were able to help.
She again began seeking help outside of conventional medicine including Dr. Jason Hao , a pioneer of a technique called neuro acupuncture, Tom and Susan Wolfe, certified herbalists in Ayurvedic medicine, and Dr. Nader Soliman , a practitioner of homeopathic medicine. These treatments have been helping, but they’re unfortunately not covered by health insurance.
It’s been a long road, but Therese is getting better. After 6 months she is about 40% improved. She’s now able to take short walks outside and do basic things around the house, but the health care practitioners she is seeing say that it could take another 3-9 months before she’s able to have her life back again.
We’ve been able to weather these first six months with support from our families, but she is still not well enough to work, and my non-profit salary is not enough to support us both until she’s better.
If you know Therese I don’t have to tell you that a sweeter, kinder, more generous person does not exist on this planet. She has spent the past two years making New York’s public health care system more inclusive, and she has a great deal more to offer the world. She just needs a little help. So we’re asking for it.
If you want to learn more:
What Happens When You Have a Disease Doctors Can't Diagnose
Unrest - a documentary about ME/CFS
What is POTS?
Video crediting:
Jennifer Brea, "What happens when you have a disease doctors can't diagnose," filmed June 27, 2016 at TEDSummit, Banff, Canada. TED video, 17:08, https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose/details.
Theo Sturz, "The Wedding of Carol Russo & Daniel Stone Part IV," YouTube video, 8:39, November 3, 2013, https://www.youtube.com/watch?v=xL4YkDReCGg.
New York City Health and Hospitals, "Partners in LGBTQ Health Care," YouTube video, 1:37, June 16, 2017, https://www.youtube.com/watch?v=GdtS8aKxkLA.
Evan Carter, "What is POTS? - Dysautonomia International," Vimeo video, 4:06, 2016, https://vimeo.com/187089086.
Dr. Jason Hao, "Acupuncture for Paralysis," YouTube video, 5:38, February 24, 2016, https://www.youtube.com/watch?v=-st02qJ76vs.
Music crediting:
Michael Wall, That Painting, 2017.
Michael Wall, Sha, 2014.
Michael Wall, South Ballad, 2004.
Michael Wall, Choir Only, 2004.
All music by Michael Wall available at https://soundformovement.com/music.
Fundraising team (2)
Alexander Thompson
Organizer
Brooklyn, NY
Therese Russo
Beneficiary
Therese Russo
Team member
