Marisol Thomas: Honoree Speech at GLA NYC Gala 11-10-2017
- 7 years ago
Marisol Thomas delivers an impactful and moving speech at the Global Lyme Alliance New York Gala, October 11, 2017. Marisol articulates her multi-year struggle to get an accurate diagnosis and her ongoing struggle to exist with late-stage neurological Lyme disease and multiple co-infections.
Marisol’s speech moved the more than 700 people in attendance at GLA’s 2017 New York Gala–both patients and non-patients. For patients, they identified with Marisol’s moving and heartfelt words. For non-patients, they got a very real glimpse into living with Lyme disease, including dismissal by doctors, the daily struggle to exist, and the impact it takes on the patient’s circle of family and friends.
Rob Thomas on Marisol’s 14-Year Lyme Disease Battle: ‘It’s Like a Weird Alien Inhabited My Wife’
Rocking out, side of stage, while her husband, Matchbox Twenty frontman Rob Thomas, performed in Chula Vista, California, Marisol Thomas may have appeared a gorgeous picture of health and happiness as she sang along to the band’s hit, “Disease.” But behind the smiles, the scene was a rare moment of reprieve from a debilitating 14-year fight against a disease which Rob says has transformed his perspective on life, robbed any thoughts of having more children and “inhabited” parts of his wife.
“It’s crazy how normal something abnormal can become,” Rob tells ET, during a rare interview with Marisol to promote Global Lyme Alliance’s 3rd Annual New York Gala -- where he will perform and Marisol is an honoree for her advocacy work for Lyme and other tick-borne diseases. “It’s like if one day you woke up and there was an alien living in your house and the first couple of weeks you’d be f**king freaked out, but after a while you’d name it and it would just be there. This sickness has been like this weird alien that’s moved into our life and inhabited my wife. Sometimes she’s just not herself. Watching the person you’re closest to become someone other than herself is so [hard].”
The couple has grappled with Marisol’s health battles for more than a decade, during which she visited countless specialists, desperate for accurate diagnosis and treatment. Showing symptoms of autoimmune disease, she was told she had Multiple Sclerosis one minute, Lupus the next and at one point, while lying in a hospital for days, she believed she had pancreatic cancer. Rob frustratingly recalls one specialist exploring the possibility of Lyme (a potentially fatal illness spread by ticks) years ago, but the common diagnostic test is inaccurate more than half the time.
However, after undergoing surgery to remove a lesion from her brain in 2015, doctors suspected and tested for the illness, eventually diagnosing eight tick-borne diseases -- including late stage Neurological Lyme Borreliosis, Babesiosis and Bartonella -- all of which induce different symptoms and require various treatments and doctors. The infections are also believed to have triggered Hashimoto’s disease and Lupus-like symptoms, as well as Atypical Trigeminal Neuralgia, nicknamed the “suicide disease,” because it attacks facial nerves and “makes you wish for death.”
“After brain surgery, everyone went, ‘You’re on the road to recovery -- you’re doing great,’” reflects Marisol, 41. “But that was actually the easiest part. The real battle began when we finally figured out what was going on with me.”
While Lyme can be cured with antibiotics if caught early, Marisol’s late-stage diagnosis and presence of multiple infections means it’s harder to manage. Her treatment is constantly tweaked according to which infection is flaring up most, and involves a mixture of pharmaceutical meds and holistic therapies, some of which are not easily obtainable due to being commercially unviable.
Once a driven “A-type,” who thrived in co-managing Rob’s career and passionately running their Sidewalk Angels Foundation, which assists animal rescue groups, she says Lyme has “stolen” her life and frequently traps her on the tour bus with symptoms including visual disturbance, numbness, seizures and constant pain. Being correctly diagnosed means she has better treatment, fewer seizures and more hours of feeling “semi-functional,” but the former model says there’s still a “long road ahead.”
“It’s like you’re standing still unable to participate as everything keeps going on without you, then you wake up the next day and the same thing happens,” she explains. “I don’t consider what I’m doing living. I’m existing … and fighting to hopefully one day live again. That’s a horrible place to be in and I have support to pursue it, but I know there are people who don’t. You become so sick of being sick and want nothing more than a moment away from it, so if I have a [good] moment I run with it. My mom and I call them happy moments and I do more in those hours than I ever would’ve before!” http://www.etonline.com/exclusive-rob-thomas-marisols-14-year-lyme-disease-battle-its-weird-alien-inhabited-my-wife-87787
Marisol’s speech moved the more than 700 people in attendance at GLA’s 2017 New York Gala–both patients and non-patients. For patients, they identified with Marisol’s moving and heartfelt words. For non-patients, they got a very real glimpse into living with Lyme disease, including dismissal by doctors, the daily struggle to exist, and the impact it takes on the patient’s circle of family and friends.
Rob Thomas on Marisol’s 14-Year Lyme Disease Battle: ‘It’s Like a Weird Alien Inhabited My Wife’
Rocking out, side of stage, while her husband, Matchbox Twenty frontman Rob Thomas, performed in Chula Vista, California, Marisol Thomas may have appeared a gorgeous picture of health and happiness as she sang along to the band’s hit, “Disease.” But behind the smiles, the scene was a rare moment of reprieve from a debilitating 14-year fight against a disease which Rob says has transformed his perspective on life, robbed any thoughts of having more children and “inhabited” parts of his wife.
“It’s crazy how normal something abnormal can become,” Rob tells ET, during a rare interview with Marisol to promote Global Lyme Alliance’s 3rd Annual New York Gala -- where he will perform and Marisol is an honoree for her advocacy work for Lyme and other tick-borne diseases. “It’s like if one day you woke up and there was an alien living in your house and the first couple of weeks you’d be f**king freaked out, but after a while you’d name it and it would just be there. This sickness has been like this weird alien that’s moved into our life and inhabited my wife. Sometimes she’s just not herself. Watching the person you’re closest to become someone other than herself is so [hard].”
The couple has grappled with Marisol’s health battles for more than a decade, during which she visited countless specialists, desperate for accurate diagnosis and treatment. Showing symptoms of autoimmune disease, she was told she had Multiple Sclerosis one minute, Lupus the next and at one point, while lying in a hospital for days, she believed she had pancreatic cancer. Rob frustratingly recalls one specialist exploring the possibility of Lyme (a potentially fatal illness spread by ticks) years ago, but the common diagnostic test is inaccurate more than half the time.
However, after undergoing surgery to remove a lesion from her brain in 2015, doctors suspected and tested for the illness, eventually diagnosing eight tick-borne diseases -- including late stage Neurological Lyme Borreliosis, Babesiosis and Bartonella -- all of which induce different symptoms and require various treatments and doctors. The infections are also believed to have triggered Hashimoto’s disease and Lupus-like symptoms, as well as Atypical Trigeminal Neuralgia, nicknamed the “suicide disease,” because it attacks facial nerves and “makes you wish for death.”
“After brain surgery, everyone went, ‘You’re on the road to recovery -- you’re doing great,’” reflects Marisol, 41. “But that was actually the easiest part. The real battle began when we finally figured out what was going on with me.”
While Lyme can be cured with antibiotics if caught early, Marisol’s late-stage diagnosis and presence of multiple infections means it’s harder to manage. Her treatment is constantly tweaked according to which infection is flaring up most, and involves a mixture of pharmaceutical meds and holistic therapies, some of which are not easily obtainable due to being commercially unviable.
Once a driven “A-type,” who thrived in co-managing Rob’s career and passionately running their Sidewalk Angels Foundation, which assists animal rescue groups, she says Lyme has “stolen” her life and frequently traps her on the tour bus with symptoms including visual disturbance, numbness, seizures and constant pain. Being correctly diagnosed means she has better treatment, fewer seizures and more hours of feeling “semi-functional,” but the former model says there’s still a “long road ahead.”
“It’s like you’re standing still unable to participate as everything keeps going on without you, then you wake up the next day and the same thing happens,” she explains. “I don’t consider what I’m doing living. I’m existing … and fighting to hopefully one day live again. That’s a horrible place to be in and I have support to pursue it, but I know there are people who don’t. You become so sick of being sick and want nothing more than a moment away from it, so if I have a [good] moment I run with it. My mom and I call them happy moments and I do more in those hours than I ever would’ve before!” http://www.etonline.com/exclusive-rob-thomas-marisols-14-year-lyme-disease-battle-its-weird-alien-inhabited-my-wife-87787