LGB: Let’s start in the light. Tells us about all the awesome things you’re doing with your life right now and what it’s like to be over Lyme.
Catherine: I love starting in the light as that’s so important to keep focus on the positive in life. When someone is suffering from Lyme, it can feel impossible to focus on the light but it’s vital to healing and shifting our energy.
My life today is vastly different from my life just three and a half years ago. I’m the founder of the Forever Fierce Revolution, an international movement with a mission to inspire and empower women at midlife and beyond. We have almost 6,000 members from around the world, and I manage a large volunteer team as changing a paradigm takes a village. We are actively working to shift the perception of older women to a frame that is vibrant, youthful, and relevant. I launched my blog, CatherineGraceO.com, which is centered around fashion as a medium to share my message of empowering and inspiring women of all ages. Finding my voice was the key to saving my life. I like to say that “I’m not changing clothes. I’m changing lives.”
In the past year, I’ve launched three large social service campaigns touching almost ten million in following. One was designed to bring together the millennial and midlife demographics to blur boundaries and end divisions. Last year, I launched Forever Fierce Media, a digital production company focusing on message-based content for national brands. We have produced several successful commercial campaigns for national brands. Our latest video campaign received 200,000+ views on Facebook alone! That was super exciting. I have my own talk show/podcast called Forever Fierce. We film weekly video shows with incredible guests to inspire our community to reinvent, rewire, and be relevant.
LGB: Where were you living when you first got sick? How do you suspect you got infected?
Catherine: I wasn’t diagnosed until spring of 2014 but my doctor traced the illness back over a decade. I had two cases of spinal meningitis that were ten years apart. That’s a common complication of neuro-Lyme, when the illness crosses the blood brain barrier. I was living in Chicago near the forest preserve. We would have deer in our front yard and pull them off my puppy. That’s most likely how I contracted the Lyme. I was really sick for a very long time, going from doctor to doctor, but no one would believe me. I would be sent away from doctors’ offices and even the ER with life-threatening conditions because I looked well. They thought it was all in my head.
LGB: For how long were you undiagnosed? How sick were you?
Catherine: I was in a very unhealthy marriage that had an enormous impact on my health. I was chronically sick with sinus infections, bronchitis, pneumonia, spinal meningitis, severe digestive issues that eventually required two different resections of my colon along with wicked insomnia that got to the point that I could barely sleep.
By the time I was forty-five, I had changed doctors. My new doctor told me that I had the medical file of an eighty-year-old woman and if I didn’t leave my marriage, the next thing would be cancer. So I left, and moved to LA to start my life over. I thought the health issues would be over then but they continued. That’s when I had the second abdominal surgery and the second case of spinal meningitis. I was in the midst of a Master's in Spiritual Psychology program and I had to drop out.
I switched to a doctor who had an integrative MD and treated many of the “last resort” cases of Lyme. The first time I met her she told me she was pretty sure I had Lyme disease and had had it for over ten years. Within four months, I would receive a positive diagnosis through blood work and begin treatment. Within a month of treatment on four different heavy-duty antibiotics, I started having full-body seizures that would last from three to six hours most days. I wasn’t able to eat or walk much of the time. My weight plummeted to 100 pounds and my organs began shutting down. On 11/11/14, I went through a Near Death Experience. Honestly, I was pissed that I survived as I’d been praying to leave. The suffering was out of control and I was at the end of my rope.
LGB: Can you say more on how the relationship with your husband affected your illness?
Catherine: I was married for twenty years and I’m not able to say much about my marriage or ex-husband due to his threats of legal action. Let’s just say my marriage was extremely unhealthy. I was in and out of the hospital and doctors' offices. I had to undergo major abdominal surgery and even eleven spinal taps at one point. I never had a husband by my side during any of this. He was completely unsupportive and would leave to go play golf while I would have to find my own way to the hospital in life-threatening conditions.
When my doctor told me I needed to leave him, I listened. It was really hard as I knew no one in LA other than my daughter. I was starting over from scratch and leaving everything behind. I cut ties with just about everyone including my siblings who weren’t there for me while I was dying. Lyme disease is so vastly different than any other illness. There is such a lack of compassion, understanding, education, and awareness. Most of my friends and family ran. I had my two kids, my ex-boyfriend and another male friend in my life. They were my rocks. I had a few girlfriends from Chicago that would call and check in, but that was about it. It was a time of immense despair. The despair was the worst part of the illness.
LGB: What were doctors treating you for and with leading up to your diagnosis?
Catherine: In 2012, I had my second case of spinal meningitis while in my Master's program. I went right back to school as I was determined to finish the program. In 2013, I was in the hospital for two weeks with a major abdominal reconstruction surgery. I had a volvulus during my marriage, which is a life threatening condition when the colon twists itself into a knot and cuts off your circulation. I had my large intestine resectioned. Later, I ended up having my small intestine resectioned as the scar tissue and adhesions from the first surgery led to a severe obstruction. What I learned later from my doctor was that Lyme disease attacks scar tissue. So, when I had the first surgery on my colon, which was an emergency surgery, I had an abnormal amount of scar tissue that led to keloids and had to be surgically removed in a five-hour operation.
What I’ll never forget is that at the end of the surgery when they were just finishing, I woke up on the cold metal table with the bright lights blaring and the room was freezing cold. I was in shock as I wasn’t supposed to be awake as the surgery wasn’t quite over. I ripped the NG tube out of my nose, jumped off the operating table and went running through the recovery room screaming “God, help me!” because the pain was so intense. I don’t know what happened after that but I woke up the next day covered in bruises. I know the doctors knocked me unconscious and wiped everything from the medical records as though it never happened.
I had a lifelong issue with insomnia due to PTSD and sexual abuse as a child. I didn’t know that I had Lyme disease at the time and we know it attacks the central nervous system. I went home after two weeks in the hospital and I couldn’t sleep at all. I was extremely weak and frail and could barely eat anything at this point. That’s when I switched doctors as I knew something was horribly wrong.
I remember going to this new doctor and sitting in her office and finally being believed. When she told me she was certain I had Lyme disease and had for over a decade, I burst into tears. It was such a relief to be seen, heard, and believed. Finally, here was a doctor who didn’t think I was crazy.
LGB: When you started antibiotics, what happened?
Catherine: I had moved up to Lake Tahoe and was going back and forth once a month to LA for my Master’s program. I was training as an equine therapist working with rescued horses. I wanted to start my own program for women who had been abused. I had just been diagnosed with Lyme the month before and was on four different extremely high doses of antibiotics. My ex-boyfriend came to move me back to LA for treatment and when he was there, the seizures began.
Suddenly, my legs started convulsing and kicking. He took me to the ER in Tahoe but they didn’t have a neurologist. The seizures would come out of the blue and last from three to six hours a day. They were full-body seizures resembling those of an epileptic except that I was fully conscious. They were so powerful that I could hurt someone if they came close to me. My ex-boyfriend would try to hold my limbs down because they were so exhausting and I was physically drained. They could happen day or night at any hour. I would be drenched in sweat. It was like running a marathon.
I ended up getting off all antibiotics in about a month but the seizures would continue for almost a year.
LGB: What state were you in psychologically when you had your near death experience on 11/11/2014? What would you say your attitude towards death was at this point?
Catherine: It was an extremely stressful time. I was so weak and debilitated by that point. My neurological and cognitive functioning was really low and my depression had spiraled into despair. Most days, I could barely walk or get out of bed. Sometimes, I wouldn’t be able to get out of bed or take a shower for a week. I looked nothing like my former self and I’d given up on caring about how I looked. I was so weak that many mornings I would simply try to lift my arm and I couldn’t. I would try to stand and just fall down. The days felt endless as I rarely slept and if I did, I would be awakened by seizures or crazy nightmares. I even had hallucinations and got to the point that I was terrified of the little sleep I could get because the nights were so brutal.
On 11/11/14, I was supposed to travel to Chicago as I was in the midst of a court case with my ex-husband for support. My doctor had forbidden me to travel as I was in a life-threatening condition but I begged her to let me go in a wheelchair with seizures to show the judge my condition. The judge had been led to believe that I was lying and I had to show her. Two hours before my flight, my lawyer withdrew from my case. I remember going into shock.
That evening, things started getting really strange. My friend Dave was with me but I told him to go home. For some reason, I needed to be alone. It was dark and I remember the house started feeling like the house in the Wizard of Oz. I had this feeling of terror come over me. I was too scared to sleep and so I went into the guest room. I spent the night with my body seizing all over the bed and my eyes were blinking all night long. I just waited and waited and counted the minutes until the light of dawn came. When I saw the sun beginning to peek through the blinds, I put my legs on the side of the bed and I melted to the floor. My body was weightless, like that of a ghost. I couldn’t feel anything. I was lying on the floor and couldn’t get up. I pulled myself across the carpet and into the bathroom. I’ll never forget the next moment—I’ve never shared this story publicly—I grabbed the bathroom sink and began pulling my weightless body up. Suddenly, I looked into the mirror and into my eyes and I was gone. I saw the reflection of the outline of my body leaving my body in the mirror. It was a reflection of me, all lit up much like that the ghosts in Ebeneezer Scrooge. I was leaving myself and walking outside the bathroom.
I fell to the floor and hit the cold tile. I pulled myself little by little back to the bed and tried with all my might to climb into the bed. It was almost impossible. Not long after, the phone rang and my ex-boyfriend was calling to ask how I was. All I remember saying is, “I’m not here. I’m not here.” He was so confused. We both were.
About two months after this, I went to see a woman who’s a “soul coach” and can see into other dimensions. She looked at me and had this look of total shock and awe. She had this expression I’ll never forget and she said, “Oh my God, I had no idea this could happen.” She looked way up above my head as though she was looking to the heavens. She said, “The vortex to the light is open. You’ve been walking around in a Near Death Experience for almost two months, which is impossible. You have a choice to make. Do you want to stay or go? You can leave now or I can close the vortex and you can stay.” I couldn’t process what she was saying. I told her to close it but I could barely speak. Once again, I was in shock.
Two weeks later, I went to see a deeply spiritual man who can also see into other dimensions as I couldn’t believe what had happened. He told me that it was true. That when the vortex opens to the light, the magnetic pull is so strong that your physical body can only last seconds to a couple of minutes. He told me that what I did was impossible, but I did survive it because the force of my will kept me here. He was someone I trusted immensely. It took me a long time to process what I went through and more importantly, why. I had been praying to leave. I was deeply spiritual and had no fear of dying. What I had was a fear of living.
It’s taken me a long time to understand why I survived. God decided it wasn’t time for me to leave. I’m making the most of my time left on earth and dedicating my life to leaving this world a better place.
LGB: After your NDE, you had an interaction with your daughter that flipped you from “illness to wellness.” What was that?
Catherine: After the NDE, I was still extremely weak and bedridden with seizures. It was spring of 2015 and the despair had returned. I was still here but I couldn’t understand why as the suffering wasn’t over.
My daughter came by one day and saw that I was in a dark place. She looked at me in exasperation and said, “Mom, what would you do if you were well?” In an instant, out popped, “I’d travel... I’d travel the world.” I was surprised by that moment of positivity. I remember grabbing my laptop and instead of searching for endless Lyme protocols, survival stories, or books and supplements, I started creating a bucket list. It wasn’t long after that I called a travel agent and told her that I wanted to book a trip around the world. I began dreaming, scheming, and visualizing and I completely stopped thinking about Lyme or spending time online focusing on my illness.
My daughter made me a set of “mantra” cards. Each card was handmade with pictures of me and sayings that were uplifting and filled with wonder such as “I wonder what new friends I’ll make today?” or “I wonder what amazing things are going to happen to me today?” or “I wonder what beautiful places I’ll be traveling to?” They were questions designed to open up my energy and get me to shift my focus from negative to positive or from illness to wellness.
In a few months, I called my landlord and told him that I was going to spend a year traveling abroad. My dream was to heal and to blog about my story. I wanted my own “Eat, Pray, Love” journey. Keep in mind, at that point, I was barely walking around the block but my dream was alive and well.
I didn’t end up traveling the world but it didn’t matter because I believed I could. I began doing a lot of inner work and focusing on my belief system, my attitudes, and my mindset. It wasn’t easy and I’m still a work in process as those old stories come and go, even today. But what I found was that I was trapped in the illness, in the story of Lyme and the suffering. Once I let go of the illness and began to shift my focus on wellness, I would begin healing rapidly.
LGB: When and why did you leave your doctor who was treating you for Lyme?
Catherine: My doctor was the doctor of last resort. She saw the sickest of the sick patients and the worst cases of Lyme. At one point, I had so many co-infections, illnesses, seizures and I was completely debilitated, she looked at me and said, “I don’t know how to help you.”
I realized I had to help myself and left her in the beginning of 2015. She had some disempowering things such as when we did the genetic testing. I had some very serious genetic issues. She looked at the results and told me that I had the genes nobody wants. I was shocked but too sick and weak to leave at that point but in my mind, I was already searching for alternatives.
LGB: You told me in an earlier conversation that “every person with Lyme has been disempowered by something.” What did you do personally to get empowered?
Catherine: Let me qualify that. What I mean is that every single person I’ve spoken to so far has resonated with my story and has opened up about their story. Every one of them has shared a personal story of being disempowered by someone or something in life. I was stunned at the connection that so many have been through trauma and abuse. There are many different forms of trauma. Trauma is unique in that it’s stored in our cells. When we experience trauma of any kind that overwhelms our brain’s capacity to process it in the moment, it gets forced immediately into our cells and our unconscious memory. Oftentimes, it can take years or decades for those memories to surface. There is a scientific connection between trauma, abuse, and health issues. There are a couple of centers that focus on the connection of trauma and Lyme disease. In my case, I know in my heart that the abuse was at the core of my illnesses and healing the abuse and trauma was at the core of my healing.
When I was in Chicago, the doctor who told me I had to leave my marriage also told me that I needed to empower myself. He could see the toll the abuse had taken. He encouraged me to begin martial arts. I started with Krav Maga. It’s a form of martial arts in Israel. It was so empowering to learn to use my energy and strength in that way. I remember the first time I flipped a man on his back by grabbing his ear. I looked at him on the floor and kept apologizing. He said, “You don’t apologize.” That was the idea. Up until then, I would apologize for just about everything in my life. I began a slow journey waking up to the power within and taking back my power on every level.
There was a point when I was lying in bed with Lyme, unable to walk and I was so sick, tired, and frustrated. I had been doing so much inner work and I wasn’t seeing the results, at least quickly enough for me. Laura, my coach, called me and I launched into a litany of “woe is me” stories. She wouldn’t have any of it and said, “You’re a creator and you must create.” I believe I used the f-word in response. I couldn’t function due to the seizures, how the hell was I supposed to create? She asked me if I knew the story of Matisse and I said no. She said, “Did you know that Matisse created his greatest works of art from bed?” I was stunned. From that point on, I changed my attitude and began focusing on the power of my mind and what I could do rather than what I couldn’t do.
It’s also really important to acknowledge that everyone with Lyme has their own unique path of healing. I never ever want to impose what worked for me onto anyone else. When people ask me how to heal Lyme, I always tell them that I have no idea how to heal Lyme. I only know how I healed Lyme and I share from my personal experience. If something resonates with them to help them on their healing journey, that’s wonderful but it’s not an expectation of mine. There are so many factors that go into healing, and timing is very important or “divine” timing. It really depends on when someone is ready to heal. With Lyme, it can be so easy to get trapped in the story and the suffering. I didn’t realize how much energy I was expending on staying sick. I made a conscious decision internally to change my energy and my focus and everything began changing quickly.
I want everyone to know that healing didn’t happen in an instant—only the decision to heal. After that, it’s been a process that continues today. I no longer have Lyme but the disease took a huge toll on me in many ways and the underlying trauma and abuse have been a lifelong journey to heal. I’m far more awake and aware than I’ve ever been. When those old stories resurface, I know what to do with them. It’s a process but it’s an upward trajectory that’s taught me so much about myself.
LGB: Once you started doing these things, your healing went relatively fast. Can you map out the timeline for us?
Catherine: I made the decision in January 2015. That was the timing of the conversation with Laura about Matisse. In April 2015, my daughter gave me the secondary jolt with the "mantra" cards and the conversation that led to my dream of traveling the world. From there, I started going on photo shoots with her taking the photos. I launched my Instagram account in July of 2015 and I haven’t looked back, only forward.
LGB: After launching your Instagram, many people with Lyme have reached out to you and you’ve spoken with at least a hundred “Lymies.” What were some of the commonalities you observed?
Catherine: It’s interesting. I was talking to my coach who’s become a close friend about the energetic, vibrational patterns she'd been seeing for a long time. What I’ve seen in the hundreds of “Lymies” I’ve spoken to is a common thread when it comes to certain emotional or energetic dispositions. Most are very kind hearted, empathic and empathetic, sensitive and compassionate people who have been giving and giving for most of their lives. They have been putting all of their “love and light” out into the world but not giving it to themselves. I woke up to the realization of how unkind I had been to myself and everyone I spoke with could personally resonate with that. When you’re filling yourself with negative thoughts, it has a massive impact on your health. You can fill yourself with all the green smoothies and healthy supplements in the world, but if you do that and fill yourself with negative thoughts, it will unravel.
It’s vital to be kind to ourselves first. Be aware of your thoughts about yourself. If you were to put your inner thoughts on a speakerphone, would you want people to hear them? I didn’t realize how much energy I spent beating myself up internally. How the heck was I going to heal when I was being so mean to myself? The cascade of hormones from negative thoughts that’s been proven and science backs that up.
One other thing I’ve seen is the commonality with “Lymies” on social media to use their stories to draw others in. They put their Lyme names on their IG feeds or make everything about Lyme. I remember several of my Lyme friends asking why I didn’t do that or use the traditional green hearts. It wasn’t that I wasn’t supportive or was judging any of it. I just saw that so many were absolutely vested in their Lyme as a big part of their identification. I worked with one woman giving my time to her for about a year and a half and finally stopped one day when she went on this public rant about how she would forever hold onto Lyme. I realized I couldn’t help her and was expending a ton of energy. I also see many falling into the trap of these Lyme support groups where there can be a lot of darkness and anger. I don’t like giving advice to anyone but in this case, my advice would be to ask yourself, Is this group is supportive? Are the people in it getting better? Do you feel better as a result of the group and is it an additive in your life? Many times the groups are draining and people are staying stuck. If that’s the case, I would leave and find a group that’s uplifting where you see inspirational stories and people who are healing.
LGB: I first discovered you on Instagram. Your 11/11 #metoo post knocked my socks off, and I knew I had to interview you for LGB. Thank you for being open about having experienced abuse and trauma in the past. The post made me think of something I read in one of Dr. Richard Horowitz’s books, and later heard him reiterate in an interview, that patients with pasts of trauma—emotional, physical, and sexual—are “the most challenging to treat. There is evidence that early trauma can damage the immune system, and it makes these individuals, once infected, more vulnerable to the worst ravages of the disease. However, I know that once they have gathered up the courage to go into their own pain and suffering and transform it, they will have an easier time healing.” [Why Can’t I Get Better?]
From your personal experience, what do you feel is the link between trauma and chronic Lyme? And what would you tell people who’ve experienced abuse, including sexual abuse, that are dealing with Lyme?
Catherine: There is an undeniable link. I believe the trauma and abuse were at the core of my illness, but healing it was at the core of getting well. One thing my doctor shared with me that I’ve never forgotten was that the immune system is the boundary of the body. When someone is sexually abused, that boundary is gone immediately and so is the immune system. I haven’t had a functioning immune system since I was a child. I still don’t to this day. I was diagnosed with PTSD when I was going through my divorce. I remember seeing a major infectious disease specialist who told me the PTSD was the real problem. The Lyme was only a symptom. I found that to be true. Heal the trauma and get help. Trauma is very unique and delicate. You have to have help to deal with something like sexual abuse.
LGB: You made a pretty radical choice to stop treatment and leave your doctor and embark instead on a path of personal empowerment. Have you ever received pushback or judgment from the Lyme community for this decision?
Catherine: To be honest, I don’t pay attention to any of it. I never, ever impose my beliefs or choices on anyone else. Each person must be empowered in their own decision-making process. I know how I healed. I know the decision was right for me.
I remember my daughter coming over one day when I had all the protocols laid out. I would go from the rife machine to the infrared sauna to the homeopathy protocols with the special diets, etc, etc... Every day was just pure desperation and survival. If I wasn’t at the doctor or in the hospital, I was following a protocol or researching how other people healed. I spent almost every waking moment in fear and desperation. You can’t heal that way. The energy of joy is a million times more powerful than any supplement. Most people with Lyme don’t remember what joy feels like. I sure didn’t. At one point, I was in the ER and the doctor was going to put me into the psych ward for telling him I had Lyme. He told me I was crazy and that Lyme didn’t exist. I was so angry! I called my daughter and she came and talked to him and I got admitted into the hospital. She tried to uplift me and asked me what music I wanted to listen to. I went blank. I couldn’t remember a single song that made me happy. I was dead on the inside. Joy was gone. I had to find a way to bring it back. Healing requires joy, laughter, passion, and purpose. Creativity is healing. Service is healing. Most people with Lyme think they can’t do any of these things. I say they can and they must.
LGB: Lastly, what would you say to those who may be reading this who feel like the transformation you made, from near death to thriving in life, is impossible for them?
Catherine: If I can do it, anyone can do it. Trust me, I’m not special or different than you. I didn’t think I could either until I did... the way we think is everything!
The content of this interview is not intended to replace the advice of each reader's own medical professional nor is it intended to diagnose, treat, or cure any illness or medical condition. When making healthcare decisions, such as stopping or starting treatments or medications, please consult with a licensed medical authority.