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Episode 90: Monica Dubeau - CCI, Chiari & EDS
26 Plays12 days ago
Monica shares her extraordinary journey through years of unexplained pain, repeated misdiagnoses, and a 20-month diagnostic odyssey that ultimately led to confirming that her symptoms were real, and that she was suffering from Craniocervical Instability (CCI), Chiari malformation, tethered cord syndrome and Ehlers-Danlos syndrome (EDS). What begins as a story of a healthcare system that repeatedly failed to recognise a rare condition becomes a powerful conversation about resilience, advocacy and finding purpose through adversity.
Monica speaks openly about losing her health, career and identity, while also explaining how she reclaimed control by becoming an advocate for rare disease patients. She discusses the realities of navigating insurance denials, undergoing an eight-hour neurosurgical procedure, living with permanent disability, and why she is passionate about improving awareness of the relationship between connective tissue disorders and menopause.
Throughout the conversation, Monica demonstrates remarkable optimism, showing how writing, visualization techniques and advocacy have transformed one of the darkest periods of her life into a mission to help others feel seen, believed and less alone.
The song that Monica chose is Man in the Mirror by Michael Jackson.
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Transcript
Introduction & Guest Overview
00:00:00
Speaker
Hi, I'm Sylvain Bertelot and you're listening to On One Condition, a podcast to raise awareness about health conditions by listening to people who live them every day. My guest today is Monica Dubot and we're going to talk about cranioservical instability or CCI as well as atheus Hi, Monica. How are you doing?
00:00:25
Speaker
I'm doing great, Sylvan. Thank you so much for having me. Well, thank you for joining me. And as you know, I love starting with a song. So could you tell us which song you chose and why?
00:00:37
Speaker
Yes. So I chose a Michael Jackson song, Man in the Mirror, which now with his tour, ah all the new movies that are coming out now with him, um the first session just came out and my daughters have seen it in the theater six different times.
00:00:53
Speaker
So quite the surprise. i was a Michael Jackson fan when I was a little kid. So and they didn't understand him until, right? Because they're younger. So they didn't know who he was until this movie came out.
00:01:04
Speaker
But anyways, the song Man in the Mirror really resonates with me because it's about, you
Healthcare System Challenges
00:01:10
Speaker
know, you can make the change yourself. You don't need to sit around and complain and wait for other people to change stuff. You can do it yourself. And my last few years, on my whole diagnostic odyssey, it's been such a struggle. And I found myself complaining.
00:01:25
Speaker
And I would be upset about like the insurance nightmares that I had to deal with and all the different doctors. And I was upset and always felt like appointment after appointment was getting nowhere.
00:01:36
Speaker
And I finally said, okay, I can make the change. So it's like looking in that mirror and saying, okay, all right, i I don't need to complain. I can actually take charge and also lead things to the change.
00:01:47
Speaker
And so that's what I started doing with my advocacy work and working with my local representative and then the Rare Disease Advisory Council in Massachusetts. And so it's really exciting because I'm pushing for some policy change and some law changes to help other patients.
00:02:02
Speaker
Amazing. I hear that actually from many patients on the podcast, that there is a turning point sometimes where you think, I can't carry on just listening to the same thing over and over again. Exactly. Is that what you're referring to? So has it been your interaction with the healthcare system?
00:02:24
Speaker
Yes, and so it's really struggling and frustrating, especially here in the U.S., right? So I'm familiar with the U.S. structure for our health care system. As far as the insurance policies and how that works, they require pre-authorizations. And so just to give an example of how difficult this is, they require a peer-to-peer review for the surgery authorization. And so when my neurosurgeon sent in write the request to perform my surgery,
00:02:54
Speaker
The insurance company yeah has a third-party doctor that's never met me that reviews my case on paper, right, and then can decide whether or not I really need that surgery. Of course, it was denied. But when you look at how I had craniosacervical instability, which is quite rare, it's There are very few neurosurgeons in the world that actually can treat and diagnose it. And so is there really a peer-to-peer review happening in that insurance process? That's what I'm fighting with the Rare Disease Council to protect all of our rare disease patients from this because when it's a rare disease, it's very unlikely that they have somebody that that's actually a peer to them.
00:03:38
Speaker
That's very interesting. You don't think about that unless you're in the situation. Exactly.
Journey to Diagnosis
00:03:43
Speaker
And there's so many loopholes because the way the algorithms are built out for those insurance companies, of course, are set that you're not going to appeal.
00:03:53
Speaker
right So they have their system set up to deny. And if you appeal, ah many times they'll go through right on the appeal. It's a large percentage that actually do get approved after there is an appeal. But a lot of people don't know you can appeal. And especially if you're...
00:04:09
Speaker
a patient with this rare disease you've been struggling probably for years and a lot of pain and suffering and trying to get answers. And then you finally feel that you get an answer and it gets closed right in your face from the insurance company.
00:04:24
Speaker
It's frustrating. i i talked to my own neurosurgeon. mean He even told me he had a pediatrician that was supposed to have been the peer for his review that was denying a surgery for the cranial cervical instability.
00:04:37
Speaker
Wow. Okay. I feel like we've jumped straight into the deep of your diagnostic odyssey, as you called it. Why don't you take us back to the beginning? what were your symptoms to start with? Maybe.
00:04:51
Speaker
Oh, sure. Absolutely. So at first I was actually having symptoms that was a shooting pain up the right side of my face and also a lot of neck pain and back of my neck, just so much pain through there.
00:05:06
Speaker
But ah the pain would shoot up my face even if I was drinking water that was not room temperature. So cold water would, you know, like set that off. Cold foods would set that off. So I went to the dentist because in my mind, I thought it was a problem with my teeth.
00:05:22
Speaker
And he said I was a type A personality, a go-getter. And he says, you're grinding your teeth. um At night, you need a a bite guard. So he gave me this mouth guard.
00:05:33
Speaker
And that didn't work. So I went back and then he said, well, you really are grinding it you know, even during the day. So you need a separate one for the day and one at night. So I had two guards. And then he explained that my neck pain was my muscles were trying to help out because my teeth couldn't ever stop and relax. I never let any of the jaw muscles relax. So he said my neck muscles are tight because they are trying to pick up duties they weren't supposed to be doing.
00:05:57
Speaker
Eventually, though, like this just continued to spread throughout my face. And it you know and now it was my whole face, not just up my right side of my mouth. And constant when pain all the time. like i Just constant aching in my entire jaw area. And I would put ice packs on it. I tried hot little gel packs, and I'd put them on my face and try to you know soothe the pain away. I was constantly on a heating pad for the back of my neck and head. And so I ended up going to a facial specialist, which I didn't know what that was, but they they they focus on the jaw and everything else. So she told me I was a grinder. She said, you've you're under your muscles useless because she did this very extensive test. I was in her office for like four hours. And she said, my neck muscles, everything. She's like, you need physical therapy. You've just rendered your muscles useless from all your grinding and clenching. So she gave me Botox and the massature on both sides of my jaw. She said that would relax. I wouldn't be able to clench it so tight. And then she said I needed a new bite guard. So I had three bite guards now. Yeah.
00:07:06
Speaker
And she sent me to physical therapy, acupuncture, and I was going to these appointments, but it just didn't feel right to me at this point, Because the pain just keeps getting more intense. And I started having very severe pains then that were above my eye on the right side, and it felt like I was being impaled. It would come right through all the way to the back of my head as well. And I was having a constant tapping on the back of my head, felt like an ice pick all the time. So I mean, I was just really going downhill, right? So I was doing all this stuff and not getting any better. And the physical therapist at one of the appointments, she says to me, I really don't think this is from you clenching. She says, I think you need blood work. Maybe it's rheumatoid arthritis. She was like, you would need to you know try to figure out
00:07:51
Speaker
expand the horizon on this. She's like, I don't think this is you from grinding your teeth. And I said, it's nice somebody believes that. right They tell you over and over. you start to believe it
Life with CCI and EDS
00:08:01
Speaker
after a while. And I ended up then the sessions, I call them episodes where i was having debilitated episodes. I would literally have this throbbing, constant pain that was in my head all around my entire head and I couldn't move. mean, if I moved, I would throw up. So I'd be laying down. the I sometimes I'm laying on the ground. Sometimes I'd be in the bed. Sometimes I'd be you know on the couch, wherever it was that these struck me and they could last for hours, even 24
00:08:32
Speaker
And what type frame are we talking about between like the beginning of the symptoms and it being debilitating? Yes, that's about a two year time frame. Oh wow. And yeah, so I mean, but it went slowly over those two years, right? yeah So I mean, for a long time, I'm thinking it's the tooth issue. And eventually i ended up being so severe that I did go out on disability. i had to leave work. I couldn't work anymore.
00:08:57
Speaker
I mean, the debilitating episodes were happening too frequently. They became like 75% of the month. And it was such a pressure in my head. i mean, now we know it was, I had fluids that were built up in my head because the CCI was causing construction throughout my whole central nervous system, my my internal jugular veins.
00:09:16
Speaker
Everything was getting compressed and so fluids would not be flowing from the brain and down through the rest of the body in those instances when that was happening. When I went on a medical leave, I ended up having, this is where it's really a diagnostic odyssey. It went 20 months.
00:09:32
Speaker
I had 111 medical appointments. I went to a four different states in the U.S. and 26 different specialists and spanned two countries. So it went even beyond the U.S. And that's how ah long it took for me to find out that I had the craniosacervical instability and Chiari and then tethered cord and the underlying condition of hypermobile EDS. Wow.
00:10:00
Speaker
So the EDS was diagnosed six weeks after my surgery. and So the surgery I had performed was an eight-hour surgery. it had two neurosurgeons and plastic surgeon. um One neurosurgeon did the Chiari decompression. So they made room for the cerebellum that had fallen down. And and they removed part of the skull. And then my other neurosurgeon pulverized that skull remnant. And then he did the fusion. So I have titanium plate on the back of my skull and it's connected to my C1, 2, and 3 so that I could hold my head up.
00:10:40
Speaker
And then he placed the skull that he pulverized over top, the titanium, so that it would help my body not reject this as a foreign object.
00:10:52
Speaker
okay And then the plastic surgeon did the not just the closure, but also removed, you know, i had nerve damage, tissue damage, right? So he removed anything that was damaged and then layered the healthy you know muscles and and nerves and tissue together So there was multiple layers. I had multiple layers of and dissolvable stitches and I had zero outside stitches, which is really remarkable. I had oh wow no staples or outside stitches at all. Everything was fully dissolvable.
00:11:27
Speaker
Wow. That's amazing. It's amazing. So you talked about cranioservical instability, Chiari and EDS. So now you're on the other side of that journey or odyssey. Do you know what came first and what caused the other symptoms?
00:11:50
Speaker
Oh my goodness. So it's hard to say what came first, but we we do know that with EDS, you're born with it, right? It's hereditary, so it's passed down.
00:12:01
Speaker
Although I didn't know I had the condition, right? that Somehow my body was just masking that. I had no idea. i was super flexible. I did ballet as a child. i you know could do the splits in all the different directions and up and you know even up the wall. I could get up and put them up and down the wall there.
00:12:20
Speaker
Super flexible. I was on pointe shoes. Now looking back, it's obvious now that I know about EDS. I didn't even know what it was until all of this happened. That's when you can look back and say, oh, that's why. yeah well that's what happened. And so I, in fact, had pulled three tendons and ligaments from a bowling alley. incident. And it was just only, this was during the timeframe, right before I went out medically, right? It's like probably about, it was about eight months before that. I was just bullying with my family. So I have my two daughters and my husband and I somehow slipped, like my foot slipped a little bit. And so so instantly I like dropped the ball and grabbed the back of my leg because it hurt so bad. I had no idea, right? But when you're hyperflexible like that and some a slip like that, I can have more damage than somebody else would had they just, you know, had that slip and they didn't have EDS. But I didn't know that at the time.
00:13:18
Speaker
But as far as trying to understand too, you know, that this was masked for me, right? So I didn't know... But what's interesting to me in this whole journey and and what I'm learning even more recent now is how I was in a perimenopausal state and um the way that, you know, the the estrogen drops during perimenopause and menopause, there's an estrogen decline and that acts on the connective tissue. And I already have faulty connective tissue. So if you, you know, can put that together
00:13:52
Speaker
It seems that there could be this correlation then that the shift exposed then vulnerabilities that my body had actually been compensating for over those years. And this is something that's really near and dear to to me to try to figure out and get more research on because obviously I'm not the clinician, but I am somebody that you know ended up having this permanent disability now. i My mobility to go up and down or left and right is forever limited and you can't take that back i can't have those you know the titanium plates removed it's a constant pain that i'm in i'm i'm a year out from surgery it's a year-long healing recovery for the bone so my neurosurgeon told me that you know the bone growth has been really good so it's looking great um but it's a three to four year recovery for the brain itself and the synapses and getting all of that back to where it was. so this is a major surgery and recovery. And both my daughters have the tissue disorder. So for me, I'm hoping that there are more studies that can be done on this process
00:15:05
Speaker
ah between EDS and the menopausal link to see what is that connection and and to understand that. I'm hoping that clinicians will start to look at that. But there's also a new syndrome that came out and was named back in 2024 by Dr. Wright.
00:15:22
Speaker
She had done some studies on musculoskeletal issues that women would have during paramenopause and then menopause. And in those studies, she has found that ah this impacts 70% of women that are going through perimenopause and menopause, of which she says 25% become disabled. So i look at this and I say, wow, I'm one of those 25%.
00:15:51
Speaker
She's not talking specifically about the EDS connection, by the way. So I don't want anybody to think that. But that's me from my lived experience saying, whoa, wait a minute. We already know that a lot of women find out about EDS when they're older because of the menopause process. But now with this musculoskeletal syndrome of menopause that she's named, right it impacts bone, the tissues. right Menopause is really um something that's hiding in every doctor's office because... the cardiovascular system is impacted, the bone, the tissues, the brain, your sleep, mental health, right? There's a whole person health and it needs to be studied from that lens.
00:16:34
Speaker
And I'm you know very hopeful for that because with my two daughters, I don't want them to have to undergo what I've had to do to just hold my head up. It's
Diagnosis and Imaging Techniques
00:16:45
Speaker
interesting because i recorded two other episodes with people with EDS.
00:16:51
Speaker
Both were completely different stories because EDS seems to come with those comorbidities that a lot of the times seem to be the first symptoms that people notice rather than something that you can directly relate to EDS.
00:17:11
Speaker
In what you're doing, do you know if there's any chance of women being diagnosed for EDS before they have any symptoms in a way? Oh, before they have symptoms? Yeah.
00:17:24
Speaker
Most likely not, right? Because the doctors wouldn't be looking for anything. it's It is siloed, right? So it's like the all the different diagnoses. So yeah, um I mentioned the tethered cord, the Chiari, the CCI. Those are the most...
00:17:39
Speaker
severe neurological and structural conditions associated with EDS, but I also have the other conditions and was diagnosed with Eagle syndrome, MCAS, I was diagnosed with POTS. write All of this all came at the same time yeah with the EDS diagnosis. And so, like I said before, there's you can look back and then say, oh, that was POTS. Right? I just didn't know. And then, oh, that's the MCAS. Oh, my gosh, I never knew all this time.
00:18:12
Speaker
it's It's very true what you said, that every EDS patient has a whole different story on how it's impacted because it's a full body, right? And and you can have some of these disorders or conditions, right?
00:18:25
Speaker
or all of them, but everybody is totally different. And even though you have, let's say, POTS and MCAS, you might have it more extreme, right? Somebody else probably has the POTS symptoms more than I do and MCAS. Whereas I, when with the cranial cervical instability, mine was so severe that I needed the surgery. I couldn't even do the conservative treatment by the time it was found.
00:18:50
Speaker
And that's what's really scary because I kept telling doctors it hurts to hold my head up, right? And so i would lay down and that heating pad and trying to you know support my head. Sometimes I would hold it up at the table where I'm putting my chin in my hands to give it support because I felt like I couldn't hold it up myself. It hurt too much to hold it up. Yeah. And When they found the instability, the doctor that diagnosed it, it required a digital motion x-ray because you have to see that in motion. So I had MRIs that were already done from the standard MRIs where you were laying down.
00:19:28
Speaker
a neurologist that had done those MRIs and he didn't see the Chiari and he's not going to see the instability on those because the instability needed be in motion And then for the Chiari, when you lay down, the cerebellum can move back and then it won't show on the standard um MRI.
00:19:48
Speaker
So when I had the upright MRI, they could see the Chiari. I didn't even realize though, when I was getting those MRIs performed and getting those results, I didn't know there were other types of MRIs and scans that I should be looking at to have my doctor do.
Living with Invisible Conditions
00:20:06
Speaker
That's stuff that you learn as you go through it. And i created a platform where I have information on the different scans, the different imaging that's available the different doctors because there's so few doctors that are even specialized in CCI. It's hard to get a diagnosis and treatment for it as well. But there are new treatments that are coming out like and MLS laser. Some people have had success with that.
00:20:34
Speaker
for treating, you know, the CCI instead of having to do a fusion. I didn't get to do that because mine was too far gone. Who knows if doctors would have found this sooner, what I needed surgery.
00:20:47
Speaker
Yeah. We don't know. Right. and We don't know. But I did end up having to wear a neck brace for 14 months, 24-7. So i can tell you i have a love-hate relationship with my neck braces. i mentioned And I still have to wear them in a car now.
00:21:05
Speaker
and So even though I have the Fusion, When I'm in a vehicle or like on the airplane, I have a choking feeling like I'm being strangled. And that motion combined then, even though it has the titanium, I have to have the neck brace on to prevent me from feeling like I'm being choked. yeah And so that's hard because I'm 51. And so I don't like to be in a car ever. And you need a car to get to places. So it doesn't make it easy.
00:21:35
Speaker
If I do have to drive, I'm very selective. I only pick up my kids from school. I try not to drive otherwise because when you're driving, you can't wear a neck brace. yeah yeah So when I drive, it just makes all, I get a flare up and I get a lot worse in my symptoms. And constantly already, I have constant pain that's still in the back of my head and neck, and it still numbs and pins and needles. So I've only had one haircut since my surgery, and it was too painful yeah um to go through. And it caused you know a really big flare-up, too, that lasted um for a couple days. So even though I've had this surgery,
00:22:19
Speaker
I'm still dealing with issues and yeah they're invisible to anybody that looks at me. You know, wouldn't would know what I'm going through. Just like how before I was diagnosed, it was invisible. had the invisible pain, but people thought I was fine. They thought i was exaggerating because they could look at me and think I was completely fine.
00:22:40
Speaker
They dismissed me in the doctor's offices because I would come in. I have my notebook. I have all my notes. you know I'm in a former auditor, compliance type person. So i I'm very detailed, very structured, methodical. And that also then turned against me because then the doctor, she's way too articulate to have what she's saying be wrong. Okay. Okay.
00:23:05
Speaker
And I was getting so many neurological issues as this kept progressing. So as I was out on the medical leave, it wasn't just about pain and the pressure and my head and you know constant headaches and neck pain. But I was having personality changes. i was having tremors. to I had to go to an emergency room where right we didn't know was it MS, you know symptoms of MS, because one doctor was saying it could be the Early onset of that, because I was having tremors, i couldn't they were just involuntary tremors.
00:23:39
Speaker
Forgetfulness, i was moved of short-term memory. couldn't multitask. right There were a lot of issues neurologically that, again, though, if you were just looking at me, and you might not have picked up on any of those is that all linked to, so your brain was compressed?
Surgery and Recovery Journey
00:23:58
Speaker
Is that what caused all those issues?
00:24:01
Speaker
Yeah, so it was compressing my entire central nervous system and everything, right? And then the brain too was getting compressed because of how it had dropped down. So in fact, they have as part of the surgery ah authorization for insurance here, you have the trial with the neck brace. And so you have to document everything.
00:24:21
Speaker
It's very detailed chart daily that you have to do for six weeks. And you have to show what's the improvement like by being in the neck brace. Because that should simulate that if you have the surgery, is it going to work or not? Because, right, holding that up So in my case...
00:24:41
Speaker
Like I said, the love-hate with this neck brace because it's very awkward trying sleeping in that thing. can imagine I never did get used to it. But the good part was it stopped a lot of my symptoms, right? And ah my pain decreased. I went from like a 9 and a 10 on a pain scale. I dropped down to like a 3 and a 4. So that was great.
00:25:02
Speaker
But then there were things that didn't change, and that was great. some of those neurological issues like the short-term memory and the multitasking, things like that. And the doctors were saying it's hard to pinpoint because I also had the Chiari. So the neck brace was strengthening this, but the Chiari was the other portion, and the neck brace doesn't do anything for the Chiari.
00:25:27
Speaker
And so it's hard to pinpoint what symptom went to each condition. Yeah, yeah. But we knew that given the way the the trial went, that I could improve my life, right, by going through this major surgery, that it was enough improvement that it was worth it. Because it's very risky to do this surgery, and it's and it's a big recovery.
00:25:51
Speaker
Yeah, was I wanted to ask actually, I can imagine eight hour surgery when they open your head must be quite daunting.
00:26:02
Speaker
What was your mindset as you got into that surgery? Yes, that's a really great question because at one point, and this kind of goes back to the song, I think, in the beginning, what we were saying, there's a point where all of a sudden it's like, okay, I'm going to take control. I can control what I can control, but I can't control everything, right? I can't control the the surgeon's. but I can control getting the best surgeon team and in believing in them. And I can prepare for the surgery so that I am able to heal. And this, I really want to say one of the neurosurgeons that we did consult with um was in Spain and their office, they're amazing,
00:26:48
Speaker
They had suggested to me that I really needed to help my my nervous system before a surgery because they said the surgery is just a mechanical piece, but your healing is a full mind-body piece.
00:27:02
Speaker
And so you need to be prepared for that. And since I was in a fight-and-flight response for so long, right, with all this pain that my body was in, kind of get a an angry feeling too, right? Because you're mad. Nobody can figure this out. You're tired of just being in pain. you can't take it anymore.
00:27:20
Speaker
and for me, once I found out, okay, we know what this condition is. we know what and we need to do. And with the surgery, so instead of just being nervous about the surgery, I just took control of what I could. So that's where I used um their feedback to say, okay, I need to do some meditations and I'm going to visualize my surgery. I bought a book where this woman wrote about the visualization techniques and preparing for surgery and how powerful it can be.
00:27:49
Speaker
And it is amazing when you step back to look at the different case studies that she quoted, even like Michael Phelps, the swimmer. A lot of people probably remember when he was winning all those Olympic medals He was having, his coach would have him visualize winning the Olympics and winning the gold. And he would have to have that as part of his daily training.
00:28:10
Speaker
And that's where I decided I was going to do that for the surgery. So I prepared visualization that I did every day. I had it broken out into three different phases. So it was first I was waking up right out of the surgery and my husband was there and I'm giving him a thumbs up. Like I feel comfortable.
00:28:30
Speaker
And then i would visualize a few weeks later when I would be home. I'd be out walking to the mailbox. I would hear the birds. I'd picture everything, right? Because they say you have to visualize from all the senses. And then i did the longer term research. a visualization of golf because I love to play golf with my family and I haven't been able to play that now for four years. So I do miss it.
00:28:58
Speaker
I might not ever get to play it again. i'm not sure. One neurosurgeon thought I probably wouldn't. So another one said, you're just going to have to try when you're healed enough to be able to try it again. So in and that visualization, I would you know picture my family, we were out golfing. And of course, I did not get a birdie because I knew that was going to be, would be fake. yeah I was trying to tell my mind. you know It really was powerful for me. I did not end up going to the ICU at all.
00:29:29
Speaker
A lot of the patients that have the surgery end up in the ICU first and have On average, like five nights stay in the hospital. And i had just a three night stay in the hospital.
00:29:41
Speaker
Okay, wow. That's amazing. Visualization is very powerful. Yeah, I had heard of it, never practiced it myself. But I know, i'd like you said, Michael Phelps, and I know other people in sports really use that, like climbers as well and so on. so well the i Yeah, the studies that she pointed to in the book, the author, she even said about musicians. like They would have case studies where the musicians... They had three different testing components, right? One track was the the musician had to practice that same piece over and over for an hour every day. And another track was they had to practice it for half the hour and then visualize it for half the hour. And then the other track, right, they would have to just visualize it.
00:30:31
Speaker
And the last track was no do nothing. Yeah. And then they you know had them for this test. The people that just visualized it did just as good as those who have actually played and visualized it. It's really amazing.
Writing and Advocacy Efforts
00:30:45
Speaker
Talking about books. So you wrote a book yourself. Yes. Why did you want to write that book? I wanted to write the book to help others that were going through something similar as me as far as when I was going through like the deepest, darkest moments, right? didn't feel believed.
00:31:07
Speaker
I felt worthless. I wasn't a mother anymore. I wasn't a wife anymore. i wasn't a colleague anymore. i wasn't a daughter anymore. I was like, I'm nobody. Everything I was is gone. And i didn't know...
00:31:22
Speaker
what to do. And so in my mind, once I hit that point where I started preparing for that surgery and I had that whole mind shift, I said, I need to write a book because people are not alone when they're going through this because I felt alone when that was happening. And you're not alone People go through this and i wanted to share then my story so that somebody else that's going through it would not feel alone. yeah And I have created it as a series because with my daughters having the tissue disorder... and You know, there's more that I'm going to want to write about, and in particular, what happens to them. Because my neurosurgeon, he said he had just completed his seventh surgery where the child and the parent have both had the fusion, occipital fusion. Yes. yeah
00:32:16
Speaker
And I thought, that's a big number. Yeah. And so I have a vision for, you know, other books then to come out with a series that hopefully can help other people that are going through it.
00:32:29
Speaker
Yeah. Amazing. Was it before or after your surgery that you were able to write the book? I'm asking because you said that it was difficult to function. So imagine that that was probably afterwards. Exactly. It was before the surgery is when I decided to write it. And then actually writing it started after the surgery. Yeah. And right now the book is in editorial hands. It's going through the editorial process. So I'm excited. I finished the whole first book, the memoir.
00:33:01
Speaker
I'd never written a book before, right? So it was it was a learning experience for me. And i you know I wanted to really, again, lay it out there for so that people aren't alone and be really vulnerable with what I'm sharing in it, in the memoir. But what's interesting is when I decided to write the book, I told my husband and he was all excited. He's like, your spark is back. And then I had called my parents the next day. Part of me getting ready for surgery was I was walking every day because right, preparing my body it would be healthy and I was getting out and walking. So I was out there in my neck brace walking.
00:33:37
Speaker
And i had called my mom and dad to tell them that I decided to write the book. And they were like, oh, this is exciting. It's good to put your thoughts down. And my mom said, even if you don't actually do anything with this book, she's like, just writing it itself will help you heal. So she thought it was great. And then we had gone to Minuteman National Park here in Massachusetts where the Revolutionary War started. And so we had our kids sit there and I just bought the book, How to Write Nonfiction. or I just bought a book on it. So I'm holding this book, we're at the park.
00:34:10
Speaker
And this guy came up to us and he was singing and he said to us, you know, he could sing in whatever language we just you know picked. ah We could tell him any language and he'd sing to us songs in that language.
00:34:23
Speaker
And my daughters picked, you know, Italian, no right? We were picking different languages. And in talking to him, he then told us that he had been a very successful business person and was working You know, too many hours. It was very stressful for what he was doing. And he ended up having some heart attacks. And he ended up, he said, where he got put in the hospital and the doctor told him, you go back to work, you're done.
00:34:54
Speaker
you're You're not going to be able to handle this. stress. Your body can't do that anymore. And he said he had to try to figure out what was what was he going to do. So he lives near this park. So he said he was walking the park and all these people from all over the world come to the park.
00:35:11
Speaker
He decided he wanted to be able to talk to all of them in their native language. So he started learning all the different languages. So he knows more than 70 languages and he talks to all the different people in the park. But that was so amazing because it gave me goosebumps. He's sitting there telling us that yeah I'm holding this book that i'm like i just decided I wanted to write the book help people. So it just really was was a touching moment for me because I was telling him, how oh my gosh, I'm going to be having this surgery and my corporate life is dying.
00:35:39
Speaker
now gone right i'm in a different direction myself yeah it was just really powerful
Hopes for Future Research
00:35:45
Speaker
moment that's quite inspiring i have one last question for you which i love asking everyone what's your happy place the place where if you feel at peace Oh my gosh, my happy place. All right, we have three cats. You're going to think I'm a crazy cat woman, but but um my cats, ah we've had one. She's our orange tabby. We've had her, she's like 13 years old now. But when I was going through this diagnostic odyssey, my husband ended up getting me two fluffy white rag doll kittens and their brothers. And oh they're just the cutest little thing. um But they helped me at my lowest moment, tiny little kittens that needed me to take care of them and love them and be with them. So it's just brought me incredible joy, smile, very much at peace in that moment.
00:36:40
Speaker
And also, you know, with my family who knew that I needed it at the time. Amazing. And i also have three cats. So you deal I'm not going to judge at all. Although now I'm very envious of your ragdoll cats. yeah They look amazing.
00:36:58
Speaker
Oh, thank you so much, Monique. You talked about odyssey and it does really sound like it. Everything you've been through, great that you have the answers now and you're on the demand. But at the same time, it feels like you're also at the start of another journey with your daughters.
00:37:23
Speaker
So best of luck with that. Thank you. i am hopeful and we hoping that more research will be done and more treatments will be discovered. And also the siloed care will break down and so that they'll find diagnosis sooner, right? Everybody else can get diagnosed sooner because on my average for EDS, it's like 10 years.
00:37:47
Speaker
It's a long time to suffer. Yeah, and hopefully what you do with your counsel helps as well. Yes, absolutely hopeful for that. Thank you so much for having me on, Silvan. Thank you.