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The Invisible Illness: An Interview with Rob Thomas and Marisol Thomas

The Invisible Illness: An Interview with Rob Thomas and Marisol Thomas

from Huffington Post, October 12, 2016
by Andrew Cristi

Global Lyme Alliance recruits soulful songster Rob Thomas and wife Marisol Thomas for Star-Studded Gala

 

There’s no doubt that Rob Thomas is easily one of the greatest musicians of our time. Without exaggeration, the tender-voiced singer has written some of the greatest modern classics that audiences have grown to love, all with individual special meaning that fans have taken to heart as they relate to it in their own way. They are poetic brilliance, and Thomas is a masterful lyricist that knows how to touch people in a way that truly moves them. And now, the magnificent artist has the opportunity to move people more than ever as he is set to play his masterful music in front of an audience that will understand his lyrics for the way they were written at The Global Lyme Alliance’s 2nd annual fundraising gala; “Uniting For A Lyme-Free World.”

The gala, set to be held at the fabulous Cipriani in NYC on October 13th, is a wonderful star-studded event that will honor a wide range of eclectic celebrities who have dealt with having Lyme Disease in their life, such as supermodel Bella Hadid, designer and retail executive Heather Glass, principal and Tri-State president of Avision Young, Arthur J. Mirante II, and President of BNY Mellon; Karen Peetz. Amazing event planner Lawrence Scott will be donating and designing the decor for the event, and some other co-chairs set to attend are Yolanda Hadid, Dee and Tommy Hilfiger, as well as Ally Hilfiger- who wrote the pertinent book related to the issue; “Bite Me!” Thomas is serendipitously scheduled to perform- an occurrence that was planned before CEO Scott Santarella and Chairman Robert Kobre even knew about the struggles his family had gone through.

Since 2003, Thomas’ wife Marisol Thomas, animal philanthropist that runs the charity Sidewalk Angels, has been struggling to find the correct diagnosis for mysterious symptoms she had been feeling. Constantly in a pain that she describes as feeling like her face was being electrocuted, Thomas took a long journey through specialists and procedures as she tried to figure out the medical mystery inside of her. Finally, she was diagnosed with late stage Neurological Lyme Borreliosis & Babesiosis, a dangerous form of Lyme disease that could easily lead to death. And when the beauty came forward with her diagnosis, she was met with tremendous applause from her husband’s loyal fans who all rallied around her after she had brain surgery when a benign lesion were found on her brain.

Now, the philanthropist is well aware that the main idea behind Lyme is not that people must find the cure, but they must spread awareness and help people understand the disease that has puzzled the medical community and placed stigmas on the sufferers, as well as help find adequate treatments for its many different forms. Excited to join The Global Lyme Alliance, Marisol can’t wait to use her platform to help raise funds and spread the message for the cause that is so close to her heart, and Thomas can’t wait to play his songs for an audience that definitely get the special meaning behind.

Having already raised three million dollars last year at their amazing event, The Global Lyme Alliance is hoping to do all that and more this Thursday at the 2nd annual Gala- and the Thomas’ can’t wait to help them do it. Sitting down to inform fans about Lyme disease, talk a bit about their own struggles with the illness, and let people know about the event and how to help, the brave couple took some questions in the interview below. Read on for more!

You have both had an amazing reaction from Rob’s fans when it comes to your struggles with Lyme disease. Can you talk about what made you decide to start using your platform to help spread awareness for Lyme Disease?

MARISOL THOMAS: His fans have been so supportive of everything we’ve been going through. Part of why we felt it was so important that we say something is because it’s such a misunderstood disease. There are still so many people who think that you just get bit by a tick and you might get a fever, or get tired, and then you just take some antibiotics and you’re good to go, but they don’t truly understand that we’re not just talking about Lyme, we’re talking about a lot of tick-borne diseases and some could be even more dangerous.

Why don’t you tell fans a little bit about your own struggles with Lyme Disease and how it all started?

MARISOL THOMAS: Where do I begin? I could have you here for a year. I’ve had autoimmune issues my entire life. But, about thirteen years ago in 2003 was when everything changed in my life, and also in Rob’s life- and I think most people who are fans of Rob will see a really big change in his music. If they go back and really listen to his songs then they can really see where it took us on our journey. Basically, I started dealing with all these autoimmune issues that really started getting worse and they never followed a normal pattern. My test results and the way I would respond was always a complete mystery to my doctors. I spent years with Rob going from one specialist to another all around the country. Everything was just mystifying- no one could figure out what was going on. I was this anomaly. And after a thirteen year journey, I finally got diagnosed properly with late stage Neurological Lyme Borreliosis & Babesiosis, also with a myriad of other toxins. I think what is so scary is that the Lyme testing in this world is a really bad situation. There is no accurate diagnostic test and it’s leaving thousands of people misdiagnosed and mistreated, or treated for the wrong disease, for many years. I am finding out that people are getting misdiagnosed with MS, ALS or even Parkinsons- and they are serious diseases in their own right, and people are getting misdiagnosed. So, they are either getting untreated, or treated for the wrong thing. I actually found out that there were some patients who passed away and it was only after when the parents found out through an autopsy that they could actually see the bugs literally in their brain. So, it wasn’t until after the fact where you find out that if they would have been diagnosed properly, these people would have been able to live a real life. So, it’s a very scary disease.

And people are still so in the dark about this illness and very little information is available to them. What are the common stigmas associated with Lyme?

MARISOL THOMAS: Well, one main thing people don’t really understand is that they always ask us is “Are you tired?” And the truth is that there are so many versions and manifestations, that everyone has a different experience. For me, being late stage Neurological, it’s literally in my head. So, that in itself makes treatment very specific. One helping factor is that there are really great doctors out there that can help you, but you have to find the right doctor to treat the exact situation you have. Lyme is one of those diseases they like to call “the invisible diseases,” and the people suffering deserve to know that they are not crazy. This is really dangerous. Sometimes people see me when I’m out and think I look fine, and that’s really difficult- Rob and I have gotten to the point where we don’t even know how to respond to that. On a daily basis I deal with something called Atypical Trigeminal Neuralgia, which has been nicknamed “the suicide disease.” I have seizures that will come on anywhere and violently- and the strange thing is, my dog will sense the seizure coming on within minutes before it actually happens. So, poor Rob has been here and not knowing what the day will bring. It can bring seizures, or constant pain and pressure that feels like my head will explode. Every nerve in my face feels like it will attack me as if someone is electrocuting my face. It’s one of the worst pains anyone can imagine. I have a few wonderful doctors on board. I was lucky to find a neurologist who specifically works with people who have ophthalmological neurological diseases and I wound up with five different eye conditions that are not true conditions, but rather how the brain perceives sight. So, Lyme disease is so much more than people understand. One treatment that could be great for one person could be disastrous for another- and that is really what happened for me, and it took a really bad situation that made me almost debilitated. That trauma lead to my doctors discovering a benign brain lesion, which lead to my brain surgery last year.

That must have been a pretty big scare! Can you talk a little bit about that experience and how Rob’s fans reacted during that time period?

MARISOL THOMAS: It was a really big issue. Rob had to stop his tour and we didn’t know what was going on. His fans were pretty phenomenal actually. Rob and I have a foundation dedicated to animal rescue and advocacy called Sidewalk Angels Foundation, and his fans rallied and were showing up to the last few shows before the surgery with these signs that said “TEAM MARI” on it. They raised thousands of dollars for Sidewalk Angels, in my honor for me going in for brain surgery. So, it was our family unit, our friends and fans that really brought so much love to us, and we really felt that we needed to speak out because there are so many people suffering.

Let’s talk a little bit about why The Global Lyme Alliance is so important and what it does for people who are suffering from the illness.

Read the entire article on Huffington Post.

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