Eleven years ago when Holly was twenty six, just weeks after giving birth, she was diagnosed with a rare autoimmune disorder. She spent two months fighting for my life in the ICU on a ventilator, completely paralyzed unable to be a mother to my newborn baby girl.
In early 2011, Holly was a healthy twenty-six year old who had just given birth to her first child, her daughter Casey. When Casey was less than a month old, Holly was diagnosed with a rare autoimmune disorder called Guillain- Barre Syndrome (GBS). The disorder progressed very quickly and within 72 hours of her first symptom, she was in the ICU on life support.
Holly spent almost three months paralyzed from the neck down, breathing on a ventilator, unable to move, speak, or hold her newborn baby girl. When she finally started to recover, she had to learn how to do everything again, including how to breathe off the ventilator, how to use her hands and feed herself, how to hold her daughter, and eventually how to walk again. Her daughter was almost 6 months old when she was finally able to return to her life as a wife and new mom.
After months of hard work and rehabilitation, Holly made an almost complete recovery. She then wrote her book, “Happily Ever After”, to share with others what she went through. Her goal in sharing her story was to reach others going through GBS and to create some much needed awareness on this rare but devastating illness. She wanted her story to remind others that through the difficult times in your life, you can find your strength. Her journey is documented in her viral YouTube Video – Holly’s Journey: From Guillain -Barre Syndrome to Happily Ever After.
Only a few years after her recovery, Holly found herself rebuilding her life all over again following the end of her decade long marriage. Instead of letting the struggles in her life break her, she used them to become stronger. Holly got herself a gym membership, and fell in love with fitness. She refused to make excuses or let her weaknesses hold her back, and gave it her all. Knowing that she had been in a wheelchair and used a walker at one point only helped her to push herself. Her determination and perseverance helped her conquer her goals, and she is now a certified fitness trainer in the best shape of her life, helping others find their strength.
Holly’s experience put her on a new path in life, and she looks back on her struggle as one of the best things to happen to her. She is now the Vice President on the Board of Directors with GBS/CIDP Foundation of Canada and connects with others through her Holly After GBS social media pages, in hopes of inspiring them to never, ever give up.
Holly now shares a life with her fiance and their blended family of five in Edmonton, Canada. Her new book Life Support replaces Happily Ever After, published in January 2023.
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Alright, welcome back again to between the before and after this is a very special episode because it's actually episode 101 and for those listening to the audio version, this is the first episode going to be released in January 2000, 23.
So, it's a great story to start the year with a very, very inspiring one.
What else makes us special, is that Holly happens to live just up the road from me by just up the road in Canada.
We're talking an hour and a half Drive, give or take, you know, we got a lot of land mass here and add Edmonton Alberta Canada.
So welcome to show.
Holly thank you so much for having me John.
Yeah it's a pleasure I stumbled across your story on a platform called pod match and actually if you listen to episode 100 you love heard Alex's story.
Alex is the founder of pod match and I asked him if he would be my guest for episode 100.
Anyway, so on this platform is kind of scrolling through looking for some really good stories to bring out the show.
And I learned that you were from Edmonton which is just up the road for me and read you.
I was like, wow now I have to interview you don't give it like a remarkable story but like I don't very often get to interview someone from my own.
Province, you know.
I know, I mean, I've been doing a lot of podcasts recently and most have never heard of Alberta.
That is I'm Jack madyan.
So right, right.
Like Edmonton Oilers anyone.
And recently wrote a book as well which was a plug that right now.
What's the title of your book that's going to be released.
The title is called life support surviving.
So it's a journey of what I went through.
Fighting a rare illness when I was diagnosed in my 20s and I will be released in January, the 3rd week of January.
Okay, well, that's exciting.
So, those listening this episode, again, you know, you just got a couple of weeks, we'll make sure we put a link in the show notes as well when where people will be able to access that as well.
So before we Dive In Your Story, which now we already know that there's one very big chapter in this story that we're going to dive into.
What are you up to now that you've finished writing the book?
How do you like to pass your?
Well, right now, I'm still pretty heavily into the bark marketing and stuff.
Doing lots of podcasts, lots of interviews, so busy with that, but I am a GBS obviously, Survivor and Advocate, which we'll talk about what GBS is and all that.
But I really, that's my passion, is just educating others about this rare illness and helping others that are going through it now.
So, I mean heavily involved with the GPS, Ian here in Canada and helping put on awareness campaigns and writing conferences and visiting patients in the hospital and then I also am.
I do Fitness training on the side as well so because you don't have going on.
Yeah, well I've been through a lot and a lot of people go through a lot and I try to just show others that, you know what, you can go through really hard times.
And even when you think that you can't get through something, you can and Fitness training is a great Avenue to help you.
Yeah, that's remarkable.
I love that.
So, let's dive into your story.
Are you born and raised in Edmonton or do you transplant?
Tell Berta, yeah.
Uh, so born and raised actually injury and Valley, which is a small town.
We are born an hour and a half west of where you are, so, and then back and forth between their and Edmonton.
And so, imagine life growing up, was reasonably normal for you.
Or is there any surprises in that?
No, I had a pretty, I had a pretty normal childhood.
I back and forth.
My parents were divorced when I was about three years old.
So that's why I moved to Edmonton at that time, and then back and forth between there.
So, my parents were very close and they like they wanted to maintain that relationship between my brothers and I.
So even though we grew up in different households, we switched back and forth every second weekend, my entire childhood really, okay?
So Any siblings?
Do you have?
I have two older brothers.
And so, were they living with one parent?
You were living at the other or they were for mostly for when I was when I was little.
And then as we grew up, we kind of Switched and changed around.
And sometimes it was one brother, sometimes it was both and that was, it was it just me.
So, yeah, it was an interesting childhood in that risk retrospect, but it was a very happy loving supportive family.
And even though my parents were divorced, they remained very close and And we did Christmas every year together.
And just, I've always had to just a very, very supportive family.
Yeah, that's pretty remarkable.
And if I have this right, I've got my mass right, are you and your late 30s?
Currently I am.
Yeah, I am third just turned.
Okay, I'm a little ahead of you.
I just, I've kicked over 40.
So, um, yeah, you know, hitting the fifth decade of life.
It seems like crazy to think about like, wow, whatever happened to, like, whatever happened.
It like, 23 year old kid.
That was doing done, right?
You seem like that long ago though?
Yeah, I know.
How the time goes by?
Yeah, so you kind of grew up with maybe a little more variety in adventure, in your, in your growing up.
Here's did this effect sort of going to school or where you're able to do it.
Stay like going to the same school.
Yeah, I went to the same school in junior, high and up, moving out, straight Valley and switch schools.
So, I mean, that was a challenge, but I think I just having that support of family and I was able to just kind of To ride the wave and get through it and and yeah, life was pretty good.
And graduating high school, did you have sort of any idea like hey, this is a future.
I want to have for myself.
What were you picturing?
I really didn't.
So I grew up obviously with divorced parents and so in my mind I wanted a family and I wanted to get married one day and I kind of wanted to recreate what I felt like, my family kind of failed at right, and so I wanted to be a mother and I wanted to get married Read one day, and just live happily ever after.
That was really my goal.
I didn't have any major career aspirations.
I wanted to have a good career and everything like that is very hardworking, but yeah, it didn't necessarily have a specific career in mind, but I knew that I wanted to be a mother.
I grew up with two older brothers and didn't really have that.
You know, I didn't have that female connection with anybody.
My brothers were very close.
They were older than me.
I kind of got left out a lot.
Yeah, and yeah, I knew that when I was older, I knew that I wanted to be a mom and I especially wanted to have a little girl, to be honest.
You know, recreate what I, what I felt like I missed out in my childhood.
Isn't that something to think about?
Kind of look back when, in hindsight the things that motivate us to go down the path we did.
And so, did you choose go to university or did you just start working?
So I'm going to figure this stuff out or.
Yeah, I started working.
I actually moved back to Edmonton and just started working doing.
Waitressing jobs and really didn't know what I wanted to do and really had no sense of purpose and no idea where my future was going to go.
Now I ended up working for a company ended up doing some admitting work and ended up getting into Human Resources.
I from there, I moved into or I moved over to doing University and went to school and getting my degree in HR and started working in there.
So I loved always helping people.
They're always very be hard-working enjoyed working with other people and helping people's problems.
And I was certainly dealing with all that a lot.
And and life was just, it was really going according to plan.
I met my now.
My ex-husband were no longer married, but I was 18.
When I met him and we were together for several years and then I got pregnant.
We were married.
When we were, we would have been 26 years old.
And yeah, life was just it was are going on a roll and it was just perfect.
How did you, how did you meet him and what kind of stuck out about him?
I met him through friends, actually.
And he was just funny and charming and we just had a lot in common.
So is this is like pre internet dating era?
Yes, yes, yeah.
And so you guys got together and when you came down GPS, were you was this, your first pregnancy or It was yeah.
So I was I had just gotten pregnant.
Sorry I had.
Just given birth.
I had a completely perfect, normal pregnancy.
I felt really good the entire time.
My daughter was born.
We named her Casey.
I, she cage came out from from a C-section just because there was a little bit of complications during birth but nothing major.
And yeah, like I said I was I was 26 years old, I was at home and the life was just Going really well, baby was healthy.
I was healthy.
It were in the middle of winter, though.
Of course, it was not in Alberta winter.
So it was like - 40 at when she was born in January.
And yeah, my life, just very, very drastically changed.
Yeah, and so, when you, when you came down TBS, was it something that come on very suddenly or was it?
You felt too well for a few days or was it just hits you and hit you hard.
So over here for my case, it hit me very, very hard and very suddenly Which in a way kind of actually helped my diagnosis because some people with gbas it comes on very slowly and doctors aren't quite sure what's going on, but for me, they recognized it right away.
So what had happened is, I was at home and I was, you know, recovering from a C-section and adjusting to life as a new mom and, and just getting used to everything getting used to lack of sleep and get all the diaper changes and waking up every two hours.
And it was adjustment.
And but I was loving it.
And I was just so happy to be a mom, and I was just so excited about our future, as you know, in Canada, we get a year off for about leave.
Not in the states where you get like three months or something.
Yeah, I couldn't imagine truthfully like I know my wife is extended hers, like a neck, he can extend up 18 months or in some positions you can which my wife yet and because even at 12 months, she was like, I'm not ready to go back.
Yeah, you know.
So I was just so, Excited for our 12 months that we were going to have together.
And I just had all these plans, we were going to take her to the wall, take her to the park and go for a walk and put her in the stroller and I had registered us for these Mommy and Me classes, where we are going to bond and, you know, and it was just, I had this whole Vision in my head of how everything was going to go.
So we're at home and and my daughter's just over three weeks old, it's minus 40 outside and we're not In the house.
I barely left the house in the the entire three weeks that she was first born because it was so cold.
And you know, I got all the time in the world and I'm just right now.
I'm just going to adjust.
So barely had even introduced her to anybody I think.
I mean obviously close friends and family had come over for a visit.
Yeah and all of a sudden I get this tingle in my finger and I looking back now I know that that was my first symptom, but I didn't at the time I thought that I had burnt myself or something because it was kind of numb And tingly.
Yeah, and I remember looking at my finger and there was nothing wrong and I was just kind of brushed it off and then that night I was going to put my daughter down and when I was walking up the stairs, I can notice that my legs were kind of weak and kind of heavy and it was odd like it just felt like it was really, really challenging to lift my leg up on the stair and I remember thinking like this is kind of strange.
Like am I getting sick or am I getting the flu?
Like, I just feel, Really, really begged.
And then of course the first thing I think of as well, you know what, you're a new mom and this is all new to you and you just haven't slept in days and you just really need a neck good night's sleep.
So I just kind of ignored it, put her down and then actually, within 15 minutes, I'm back downstairs and I get this pain in my neck and it's very sudden and severe just out of nowhere.
And I'm clutching the back of my neck and I'm thinking, like, hey, what did I do to die?
Just like, crank - Neck with stranger like did I pull a muscle or so?
I'm on Google because that's what you do, right?
You Google your symptoms and I'm Googling and it's telling me you've got a pinched nerve and so, right.
I'm thinking, okay, that actually makes sense because I'm kind of actually having a little bit, our weakness in my leg.
So it's probably a pinched nerve in my neck and it's causing weakness and even this tingling.
And so, oh, it's fine, it's not a big deal.
I'm just going to, you know, maybe see a doctor tomorrow.
Or something like that.
So just kind of brushed it off but everything just continued getting worse.
So the tingling in my finger got worse and the pain in my neck got worse to the point where I was in tears and I'm taking pain, meds and nothing's working.
And I'm just just distraught going.
Like, what is happening like, what did I break my neck?
And Y is held in.
This is all the same night like things are progressing, rapidly.
It's all within a couple hours.
So My daughter still upstairs sleeping.
I go up the stairs and again, I'm trying to walk.
And I'm noticing that my legs are just really, really weak.
And in my head, I'm still thinking it's a pinched nerve.
It's just really, really bad one.
It's a really painful one.
So I go to bed that night thinking, that, you know what, I'm just going to take a few more Advil, and I'm sure that the pain will go to go away.
And in the morning, I'll wake up and feel better.
I'm lying, and I'm laying in bed and I cannot sleep.
The pain is too bad.
I get down on the ground because my ex-husband.
In bed and he's, he had to go work to work in the morning and so I didn't want to wake him up.
So I lay down on the ground and I'm trying to do all these stretches with my neck.
And I'm trying to do these yoga poses, I'm Googling all these treatments for pinched nerves.
Nothing is helping at three in the morning, my daughter wakes up.
So, again, this is like within six hours of my head, this all happening.
And three in the morning, my daughter wakes up, and I stand to go to her and my legs basically completely gave I'm out on me and I fell.
And I'm like, okay, something is seriously wrong.
And again, still thinking, it's a pinched nerve, but I stand back up and I'm able to kind of stand and compose myself, and I'm thinking something is wrong.
I need a hospital.
I'm in tears, the pain is so bad.
So I had my then husband, he dropped me off at the hospital.
I didn't want to bring my newborn of course to the hospital.
She's still bait.
Still so new, right?
And I don't want her to get sick.
So I just told him to drop me off and I'll give you a call in a couple hours.
And yeah, I had no idea that that would be the last time that I would step foot outside of a hospital for over three, four months.
Well, okay, so you walked in under sort of your own power.
I did I walked in and I was I was I was weak but only to myself like nobody else would have been able to tell that it just it everything felt heavy.
Everything felt like it was really challenging to do.
Ooh, but if you would have seen me in person you would have you would have said no.
No you look fine.
So I go into the hospital.
I tell them that.
I'm feeling really weak.
I'm dealing with pain.
They were able to get me in to see a doctor fairly quickly.
That doctor says, I have no idea what's wrong with you and that's very scary to hear.
When I mean, I'm in my 20s and I'm thinking, what do you mean?
Don't doctors know everything and I was just blown away, but he was like, you know what, though, I'm going to find somebody that does.
So we're going to call a neurologist to come.
He's going to come down in a few hours whenever he gets a chance.
So he was very busy.
So just be patient and wait in your chair and we'll gonna give you some pain meds for the next.
So I sit in my chair and I fall asleep.
This is again, like by this point, it's about 5:00 a.m.
fall asleep in the chair in the.
ER, and I wake up to the neurologist.
Waking me up at it was supposed 7 a.m.
by now and the pain.
In my neck is completely Pletely gone.
And I'm almost embarrassed that, I'm at the, ER, with no pain and on, like, do I even need to be here?
Do I even need to see him?
And so he take a test, my strength and he has me push and pull and he's having me like push my feet against his arms and and he's like, yeah.
You're you're very, very weak in your ear rapidly, losing the ability to kind of move your arms and I don't see it but he immediately says I Don't know what's wrong with you and I think you have something called Guillain-Barre syndrome and at the time I could not pronounce that, right right?
It's French but he says it's I think you have Guillain-Barre syndrome and I said I don't know what that is.
Like is that a disease is like what's a syndrome?
I had no idea.
I was in my 20s completely healthy.
I had literally only ever gone to the hospital for a migraine.
I think a few times before.
And had never had any health problems.
So I'm thinking, okay, so just give me some medication and then I'm going to go home right and he says, no unfortunately GBS.
It's a, it's a rare autoimmune disorder and basically, what's happening is, it's attacking your nerves.
So what happens with GBS is that it basically sees a, an attack on the body and then your immune system begins to basically start to tack the nerves of the peripheral.
So those are the nerves that are not attached to the brain or the spinal cord.
So all the nerves in the rest of your body.
And basically, what it does is it starts to paralyze you.
So we don't know how severe this is going to get, is what he tells me.
And I remember thinking, well I'm sure it's not going to be that bad.
Just give me some treatment.
I got to go home, I got a baby, I'm in my 20s.
I like I'm going to be fine.
Just give me the medication and then I can go home and he's like, no, you need to be admitted.
And it was very very scary and terrifying and they're telling me your family needs to come here immediately.
This is an emergency, your daughter.
You needs to come here.
I was still breastfeeding obviously, so they said bring her here and I remember thinking, well as she's a newborn, she shouldn't come here and they said doesn't matter, bring her here and that was when I kind of realized how severe this was and very quickly everything just kind of spiraled.
So I was all of a sudden, the pain came back, the medication kind of work.
And I was in more pain than I ever thought I could imagine basically inflammation and every part of my body from all the nerves.
M neurology Ward.
I was just completely out of it, tired.
Obviously from barely sleeping and I got, they bring my daughter and my family comes and everyone's rushing to the hospital to be with me, and I'm just getting worse, all of a sudden, I'm losing.
The ability to move my arms and then I'm losing the ability to My legs, and then I can't move at all anymore.
And eventually, the paralysis is actually spread up to my chest and affected my diaphragm and that was when I was rushed to ICU and a ventilator, basically, I was attached to a ventilator and put on life support and that all happened within 72 hours.
Yeah that's crazy.
And yeah, your life is never going to be.
It was never the same after that, it was never the same.
Yeah, so for that point your ICU on a ventilator I'm guessing are you in an induced coma?
Know and everybody thinks that everybody is yeah they picture I see you that that's what it would be like and it wasn't and that's why I do actually like to share my story and bring over sure scuzz.
There are some people that go through and do some Comas and stuff like that, but I was not and although I was heavily sedated for a big portion of it, right?
There's a lot that I actually remember a And I was very coherent, knew exactly what was happening.
Understood what was going on.
The doctors were telling me you're going to get better.
GBS is an acute illness and what that means is that once the GBS, once it's done attacking the nerves, then you'll start to recover but it's just going to take time.
And so we just have to get through this phase.
We just have to get your lung strength back and then you'll be able to get out of ICU and And unfortunately that didn't happen for a very long time.
So I was actually in ICU for almost three months.
My lungs did not show any signs of improvement for a very long time.
I was completely paralyzed that for most of that time I couldn't move, I could not speak obviously at a tube first in my mouth that they later, moved it to my throat and paralyzed.
Yeah, basically from the eyes down.
So I communicated with my By blinking, they would actually point to letters on a piece of paper and they would each time that they picked a letter.
I wanted to form sentences with then I would blink.
And my daughter was there.
She was there with me every single day.
Obviously, I had to stop breastfeeding because of all the medication, right.
But they were putting her on my lap and putting her on my chest every day and beside me in my bed, just trying to keep that connection alive.
But it was, it was such a challenging time for me.
Knowing that she was there with me and I wasn't being able to being able to take care of her.
Because I had this whole life planned for us and then I felt like it was just totally just taken away from me.
And now, I am and I see you and she's getting older and every day is going by, and I'm not getting better.
And I just, I felt I truly felt like my life was over and that I was never going to get better.
And they kept telling me that I would and that I would recover but when you're in I see you and you can't move and you can't speak, and you can't communicate and breathe on your own.
And, and you can't even reach out and touch my daughter or say, I love you to her, or hold her bottle or anything like that.
I just felt very, very broken and very worthless for a very, very long time.
And, you know, you mentioned that during this time, pardon me that you were you were sedated but you were coherent.
That's a very interesting experience to go through because it's I wonder how many people go through something like this but maybe never recover and they're kind of.
So you experience what it's like to be trapped in a body that doesn't function but with a fully functioning mind that's coherent and aware.
Absolutely and even it's really good awareness even for medical professionals because I mean we had doctors and nurses and and talking about me when I'm Right there and it was just wild to me to be talked about but not to have somebody communicate with me even though I could hear everything going on.
And it was it was her I mean because I guess you can't really move anything.
We're at some point.
Did you communicate to someone who is, you know, a family member or something that I can hear everything going on.
Yeah absolutely and I think that my family was able to catch on pretty quickly.
As the pain got under control basically they did lower my sedatives.
So I appeared obviously more coherent as well so they could tell that I could understand and they were talking to me and I was able to once they move the tube to my throat, then I was able to mouths words and so that's how we basically communicated for a good month and a half, it was actually easier than getting the the letters spelled out for me.
So right when this you see moved, If throat does it does that mean it like goes through your nose to the back of your throat, versus into your mouth or no?
No tube, no.
So, basically, it started right in my mouth, is where the tube went and then they move the to.
They pulled the tube, and they actually inserted it right here.
So actually tracheotomy, yeah, at a tracheotomy.
So, yeah, it's where the tube was for the rest of the two months, right?
And then when it comes time to, you know, and you mentioned, you got to this place, where I mean, you felt very hopeless, very Worthless very helpless.
You're still thankfully.
It sounds like you did have some people supporting you that we're staying by your side and encouraging you along the way where do you find I guess since hope and encouragement in this kind of situation when you want to give up, it was so hard and I wanted to give up so many times.
And everybody kept telling me you're so strong and you can get through this and you can handle this.
And I just felt like I couldn't.
And I felt almost ashamed because I hated that people.
Kept telling me you're so strong.
And in my mind, I didn't feel strong because I really truly wanted to give up and I didn't believe that I was going to get better.
And there were times where I actually tried to, convince my family members, my doctor's my nurses, I said, just please let me die.
Just please shut off this machine, which was a very hard hard for me to admit to people because people were saying you're such a fighter and I didn't feel like a fighter, but I did find Hope in tiny little, And obviously number one was my daughter.
Just yeah, knowing that, you know what, I want to get back to her and she deserves to have a mother there with her and I can't give up.
So, she was a huge motivation.
I also had amazing nurses and family members and they decorated my whole wall with photos of my life, and my family, and my friends, and just looking at that and remembering what my Life will I was like before I really wanted to just fight so hard.
Not only for my daughter and and my friends and stuff, but for myself just to get back to me.
So I knew I had to do that.
But the biggest I think the biggest inspiration for me was actually meeting another GBS Survivor.
So the hospital that I was at, they had dealt with a case of GPS before and they brought in this patient that I had actually recovered from GPS and he came into I see you and he walked in as if he had never gone through what he did turns out he was actually in the exact same IC room that I was in well, a couple years before, and he was in the exact same position.
He had been paralyzed on my life support for four months, and he had recovered and he who appeared to have nothing wrong with him.
And so that was a huge motivation to see him standing beside my bed, breathing on his own walking.
He had Young kids with him and to see him being a dad.
It just really inspired me and I realized that, you know what, if he can get through this disease then, so can I.
So this is this highlights a really, really, really important Point as probably, why even have this podcast in a sense, is because I want to capture stories like this because I imagine kind of what you're describing there, like everybody else can say you're strong, you're gonna get through this.
We've seen people get through this, all this kind of stuff.
But when you saw the living breathing proof right in front of you, Then something shifts in you go kiss as possible because I know not just hearing it is.
Pardon me a story.
I am seeing a living example of this.
And when you're going through especially GBS, they were telling me that this is rare and many of our nurses have never seen this before.
And it's a very rare illness and although it only affects it affects about 2 out of every 100,000 people.
So, I mean, like, in the city of Edmonton, that would be about 10 people.
On average that are getting it every year or so, so rare, but still people getting it right, but when I'm in ICU and I'm dealing with, are all the pain, and the suffering, and the struggle, and the paralysis, and not being able to move my body and doctors are talking about it.
Like it's just so foreign and I've never heard of it and everyone that we're telling our family members friends, no one's ever heard of it.
So in my eyes, I felt like I was like, one in a billion.
I felt like I that no one else could ever.
Possibly understand what I'm going through.
And so when he walked in that door, yeah, it was okay, there is somebody out there, that's gone through this and he he did it.
So and so can I and at that stage where we get like how were you able to still communicate my mouthing words, and did he share anything in particular with you?
I was, yeah, he just basically answered a million questions that my family had and just talked about all the different experiences and that he went through the struggles that he went through, and he just kind of Explained what life was like for him during recovery.
So we kind of knew what to expect.
He had actually created a video of his journey that his family had videotaped, basically from the beginning of him in the hospital.
And so he actually showed that to us and said, like, this is kind of what the progression looks like.
So we kind of just knew what to expect and what sort of things were to come.
And from that point on my family actually started videotaping and taking pictures of Myself as well just so that they had something to compare myself to.
So when I started moving, my finger tips that was the first thing that happened.
It was after six weeks and it's kind of funny how that was.
That was my first symptom and that was what came back.
First, was my fingertip moving at that?
And at the time my family was just ecstatic.
They were so excited it meant that that's Improvement.
But for me, it was really hard because that didn't mean anything to me.
That didn't mean I was getting out of ICU, doesn't mean I was better.
Really mean that I'm going home anytime soon.
So, but they kept track of every tiny little movement.
They actually made stars and put them above my bed, so that I could see.
So, every time I had my fingertip move, the first time I moved my head the first time because I was like, I was like, literally like a baby, like, learning how to re learn everything.
So, my head, I have to regain that that muscle the muscles in my neck, to be able to hold my head up properly and then my hand started moving.
And so my Wrist.
I had to work on my wrist strength and eventually I was able to put the bottle up against my wrist and I could hold my daughter kind of by my arm and feed her in bed which was a huge accomplishment.
And so my my parents put the stars above my bed and that was just a huge motivation to see those stars above my bed and go, okay?
I'm making progress even though it didn't always feel like it and my family showing me the videos of the week.
Before of when I'm just at my worst, just be able to look back and see that Journey progressing, you know, I think this this highlights something else that's really important.
See, you know, your coach as well as an advocate and you know I work with people in a different kind of transformation Journey, obviously.
But along the way it's a part of the human condition when we're struggling through something to get discouraged because it's difficult.
And again, one of the things that's helping you to get through, this is seeing these little tiny markers of progress.
And watching them add up, you know, and and maybe in your head, there wasn't necessarily this, you know, I'm going to, you know, do an overhead squat, or something like that again, you know, it was.
Okay, I'm going to, I'm going to move my feet.
I'm going to lift my legs.
I'm going to stand to my feet and so on.
And there's just these little Milestones along the way, like, tracking little little bit to progress because otherwise, our attention, just like our attention.
Just goes to the thing that's very present, our mind right now.
Look how stuck I am.
And it's not look how far you've come.
Absolutely, and my mother, I will say that she played a huge part in that because when I'm talking to this other gentleman that had recovered and he's walking and and in my head, I'm trying to imagine what walking is going to be.
Like, because I can, I can barely even move my hand, and it was so overwhelming, and obviously it was so hard and painful and I just couldn't even imagine doing it.
And so my mom was like, let's not worry about that.
Let's just worry about the tiny little steps that you have to worry about right now, which number one was a Your breathing.
That was the first thing that I had to learn how to do and until I learned how to breathe, I didn't even need to focus on how I was going to learn how to walk.
So she really drilled that in and let's just focus on one step at a time and let's focus on the step right in front of us.
And that's breathing.
So breathing became my first kind of major accomplishment that I reached.
So basically I had no idea how I was going to be able to do it.
They said you have to To learn how to breathe and go be without the ventilator for 72 hours.
And after 72 hours, then they can take out the tube from your neck and we tried for 15 seconds the first time and I felt like I was drowning, I felt like I was running running out of air.
I I felt like I was gonna die.
I was screaming but I was screaming silently because my vocal cords didn't work and I was hyperventilating and they put it back on and they calmed me down And I'm like, I'm never going to be able to do this.
I can't I couldn't even do that for 15 seconds.
They assured me that as I got stronger as my lungs got stronger, it would get easier and but I wanted to believe them, it was really really hard but the the gentleman that recovered from GBS, he actually brought me a sign because I was struggling so hard.
And I just, I was having such a hard time and I knew that he was the only one that really understood and so I actually had my parents.
Call him and he came to visit again and I said, I don't know how you did this.
How did you learn how to breathe on your own?
Yeah, and he brought me this sign and he put it, he taped it right to my wall right in front of me and it said, courage doesn't always Roar sometimes it's the quiet voice saying, I will just try again tomorrow.
And I remember just thinking, okay, I can just try again tomorrow.
And so that's what I did.
I just promised myself that I would always just keep trying, even if it felt so hard and even if I felt like I gave up in that moment, I could try again tomorrow.
So, I did that.
And so we progress to 30 seconds off the ventilator and then progress to a minute and then 15 minutes.
And as time went on I got a little bit stronger and it got a little bit easier.
Yeah, go ahead.
So because your is because I think the same thing, how do you learn to breathe again?
Like was the expectation that somehow like, there's something written into your body's, like a wiring that it knows that these muscles need a move and they just were so atrophy that they couldn't move.
So it's your lungs and your diaphragm specifically are exactly like their muscle, right?
And so, they just need to strengthen and as they get stronger, then the obviously, the more, it gets easier, right?
So, you're really, in terms of Learning To Breathe Again, it's like getting a little bit of strength endurance back because we don't we just take for granted breathing and these muscles that go 24 hours a day, that we don't even think about.
The level of endurance, they have to expand and contract, a rib cage, the diaphragm, going up and down.
And so on like it's, it's, it's remarkable.
And imagine now you have, like, such appreciation for the ability to breathe with, with relative ease, absolutely.
And when I was going through it, it just felt so hard.
And every time even at like 15 minutes, I remember I did it.
And then I that was my goal that day and I reached my 15 minutes and at 15 and minutes and one second I said, put me back on and I started crying and they were like, why are you crying?
You reached your goal and I was like I did 15 minutes.
How am I supposed to do?
72 hours, how am I supposed to breathe forever?
It is so challenging.
I feel like I'm running a marathon that I've never trained for it was just so so hard to do and it felt like it was impossible and many times during that journey I didn't believe that I was going to be able to do it and I had convinced him, I'm in my mind that, you know, You may be in ICU forever or you may have a basically be on life support for ever.
I truly didn't know but what I did promise myself is that I would just keep trying and every day was a new day and let's just see what happens.
And 15 minutes turned into a couple hours and then a couple hours, turn it to six hours and 12 and 24 48.
And then eventually, I was 72 hours and I got the tube out of my throat.
After 72 hours.
You know, did you have to do 72 hours more than once or?
No, I only had to do it once.
So, basically what happened from there?
Interesting enough is they kind of figure.
Well, once you're at that point, then your lungs should be strong enough to maintain that.
And so they basically, they took the tube out and they put a little button, basically that went into my throat and they said, let's leave you in ICU for two more days and if everything goes, well, then you can just take that button out if obviously, it doesn't then they would put the Back in obviously, that didn't happen.
I just was able to completely breathe and it felt normal by that point, it felt lately, normal.
And life was just kind of all of a sudden given to me back.
And I had this ability to breathe and I'm still very weak.
I still like it couldn't move my legs at that point by on my arm strength was coming back but I got out of ICU.
I was moved to a basically a neurology Ward with a lot of Stroke patients, I was 26.
I was the youngest person on the word that everyone else was like 70 and 80 years old and stuck out like a sore thumb.
But at that point I just, I realized I could not even believe that I just overcome what I did.
I could not believe that I had just learned how to breathe and I had accomplished that and something that I had thought was so impossible to do even up until the day before the tube came out and now I had accomplished that And I knew that I would never set limitations on myself again because it was my mind that was telling me that I couldn't do it, and I had done it and I had proved myself that I could do it.
And so from there on it just really sparked a fire in me to keep going, no matter what, no matter what I was going through, just just had to keep trying, just had to keep going.
And so from there, I started physiotherapy I had to learn how to basically like just re-strengthen every single muscle, in every part of my body.
So I have you use putty to learn how to strengthen my fingers and work on my fine motor skills, like, buttoning shirts, and fastening safety pins.
And then I from there, I used 1 pound weights to do dumbbell curls.
I was basically learned how to use Cutlery, I learned how to feed myself, eventually they taught me how to, like, hold my daughter and how to strengthen my arms that way.
And eventually I was able To get out of bed, get out of the hospital bed.
I was able to stand from there.
I moved into a wheelchair.
I was in a wheelchair for quite a while, and that was actually a wonderful freedom because I was able to get out of bed and right.
You get out of the hospital room and go around the the hospital grounds and even go over coffee shops.
And so I had these glimmers of Hope to keep me going and I just knew that I just had to keep fighting and keep going and eventually I moved to a rehab hospital where I learned.
To walk again.
And I first worked walked with a walker did that for for several weeks and eventually move to a cane.
And then I was able to walk on my own and I left the hospital.
After 126 days in the hospital, my daughter was almost six months old so I'm curious in this because I feel like kind of being trapped in your own body and coherent itself might have a traumatizing effect, you know, was there some sort of psychological We are not requiring what sort of look for rehabilitation in a sense.
Like, did you have to work through any of that like with any recurring, you know, flashbacks of Visions nightmares?
Terrors anything like that?
Or was that kind of all worked through in the experience?
I know a lot of people that deal with PTSD and a lot of Trauma from going being, obviously paralyzed and being on a ventilator and I did go through that while I was in ICU.
You, I had a lot of hallucinating, a lot of traumatic Dreams and Nightmares, and just really not understanding where I was at all times.
But as I got better and I really don't know why why I got so lucky, but I really didn't have any flashbacks after that.
And I think it was partially just because I was just so grateful, I could breathe again and I could move my arms again.
And I just was just so Pleased.
And so grateful to be back to being a mother and back to having my life that I was just able to just move forward and just move on from it.
Well, yeah, that it, that is quite remarkable and I feel like we're like just scratching the surface of your story because, of course, there's so much.
There's there's time that's passed between now and now, and that time that was 11 years ago, you had come through that.
So then obviously your path in life has changed since having great relationships.
Yeah, it's completely changed my life.
When you're in your 20s, you think you're invincible and you think that you're never going to get sick.
And if you do get sick, it's going to be when you're 80 and you've got your whole life ahead of you.
And when I was in ICU, I truly didn't believe that I was ever going to get out of there.
And I was ever going to be able to do any of the things that I wanted.
And I was just so hopeless for so long and very angry at the world and Just frustrated that, you know what, I had all these plans for my life and then all of a sudden I couldn't do any of them.
And so when I recovered all of a sudden I had my life back and it was like, I was given a second chance and so everything was different and I promised myself, I was going to live things very differently.
For one my my view on the world changed, I realized how quickly life can change how I could go from completely healthy one minute.
Too paralyzed on life support in less than 72 hours.
And so I started traveling more.
I started spending more time with friends, I just put more effort into my relationships.
I also started making plans for things that I've always wanted to do.
I became more adventurous, I started climbing mountains, I started working out.
I started just really appreciating my body and what it was capable of doing and when I was in a rehab hospital, I met so many people that were in wheelchairs for the rest of their lives and they would actually never be able to walk again.
So that gave me this appreciation for the ability to walk and the ability to climb mountains and go for runs.
And so I became much more active and and just just really just started living life to the fullest.
And so you got into I think it would being a trainer as well like a personal trainer was that kind of the East career you had or like because a certain point.
I mean, you know, I just as you're learning to walk and whatnot, you're having to figure out how to be some independent again.
Because, you know, maybe there are some health benefits and Healthcare that you was was supporting you financially going through this time, but a certain point, just like getting taken off the ventilator that gets that gets taken away as well.
Yeah, so I once I was home, I wasn't completely recovered.
Although I looked like I was, I looked completely healthy and I looked Red and everything and I was walking but I couldn't walk for long distances, even like squatting down or getting down on the floor or walking long periods.
And upstairs was really, really challenging for me and I was supposed to go back to work, I was working in human resources.
And before I went back to work, they said well we need to send you to for an assessment and see basically where your health is that just to make sure that you're ready to go back to work.
And I mean, I worked at a At an office setting in a desk.
And so there was no reason why I couldn't potentially do my job from a desk, so they sent me to a physiotherapist and the physiotherapist said, yeah, you've definitely got some struggles as a lot of things that you still can't do and and I remember thinking, you know what, it's okay because at least I'm not in ICU and at least I can breathe.
And I can be at home with my daughter and I'm, it's okay and this is fine.
If this is the best I'm going to get and that physiotherapist was like, don't you want to be Better than that.
And I can do that.
I can get you there and he basically kicked my ass and he got me doing three, our workouts.
Basically, three times a week and he really showed me what my body was capable of.
And from there, I basically got into the best shape of my life and I fell in love with Fitness.
I fell in love with just the way that Fitness made me feel not only physically, but mentally as well.
And I started sharing my story, I started talking about what it was like to go through GBS and bringing awareness to it because all of my friends.
Again, they're all in their 20s, they had never heard of it before.
They, they just couldn't believe that I had gone through what I did and I started social media Pages talking about Guillain-Barre syndrome.
And from there, my life just went on this whole new path and all of a sudden I had people from around the world reaching out to me talking Out how they had gone through GBS to and how do they had gone through it 20 years ago and they'd never met anybody with GPS before entry or patients that they were in the hospital and they were maybe just out of ICU and they were wanting to talk to somebody and so, yeah, people were asking me how did you recover?
And how did you get into the best shape of your life and how did you get into fitness?
I was posting a lot of, as you see on social media, you see a lot of before and afters.
And I had this before picture of me and I see you completely sedated and just looking like, I'm near death and then this app or of me and the gym in the best shape of my life.
And so people were like, how did you go from that to this?
And I want to know, and I couldn't exactly tell them, I didn't have an educated answer for them and so I wanted to and so I went back and took my Fitness training certification, so that I could learn more about base.
How the body can recover and get through from that?
Yeah, I mean the body, the body is remarkable as is the mind, you know, to be able to bounce back from these things and so yeah.
And so now you said you spent a lot of your time as an advocate for GBS.
I guess, the one question might be on people's minds is, how does one come down with GPS?
How do you, how do you, how do you acquire it?
So GBS, it's an autoimmune disorder, so it's very similar to Multiple Sclerosis or lupus Basically the the problem lies within our own bodies.
So what happens is something happens to the body and basically it sees it as an attack and then it been begins attacking like your immune system will typically do for anything that's going on and then from there it continues attacking and it fails to stop and it starts attacking itself is what happens.
So, generally it's some sort of virus or maybe A bacterial infection or it can come on from the flu from surgery.
So there's a lot of triggers that do bring on Guillain-Barre syndrome only about 50 to 60 percent.
I think of the cases.
Are they able to actually pinpoint a trigger?
They aren't, they have no idea why it just happens, but a lot of the cases, they are able to look back and it's usually about two to four weeks after something.
So, like I said, sometimes it's Jury The Flu Near You section.
For my case it was going through pregnancy or childbirth or the C-section.
They're not exactly sure.
But it is quite common actually after birth.
So I've met many many women over the years that have had GBS shortly after giving birth.
Yeah, and it was your case, particularly on the scale of, I imagine every case exactly the same was your case, particularly severe or it was so my my Acute phase was very severe.
So only about 30% of GBS patients.
Actually end up on a ventilator so the rest will obviously deal with a lot of weakness.
There's some very mild cases that they may even not, even have to be hospitalized, they may be sure have some struggles walking and then they'll have to do some physiotherapy and to re-strengthen, but they won't even be in the hospital.
Yeah, it's quite it's quite a while disorder but then it can range from more severe where you end up in the hospital and end up on a ventilator.
Later, but my recovery was actually quite quick.
And not, everybody does recover, completely and I am very fortunate.
I know that hard work played a very important role but at the same time, very, very fortunate that I was able to recover as well as I did.
I think having having all of that tremendous support as well made a big difference for all those days that you wanted to give up and and not keep going basically.
So having people in your corner?
I think that's a huge lesson for anybody that's going through a hard time as like as having that support system and like you said is just finding somebody else that maybe has gone through what you can to just be your kind of mentor and somebody to guide you through it.
Yeah I mean it speaks to the value of like even like coaching and mentorship and things like that but just just having support because I think one of the worst ideas we ever came up with and like maybe it seems to be a western idea that we should be able to figure everything out by ourselves and asking for help is a problem and likes the best.
Thing, the world you would ever do is ask for help and, you know, learn from somebody else's experience, rather than trying to struggle and fight and do this all by yourself.
And that's really why I tried to bring awareness and talk about my disorder and talk about what I went through and and how I overcame it because I don't want anyone to be.
Like I was when I was in ICU believing that this is the end, there is no hope there is no reason to fight because that's how I felt.
A very long time.
And so I just I really want my story to remind people that, you know what?
You can go from Rock Bottom, where I was and recover from that both mentally and physically and if I can go through what I did, then there's so many people that can get through hard things as well.
And from the time that you had gone to your GPS experience to, you know, you're speaking you're advocating.
You're visiting other people who might be going through her having gone through it.
Have you seen like the understanding of it evolve and Maybe the treatment and care of it evolve and does that make a difference?
You know, in 2023, someone having GBS would probably, hopefully have a different experience than you would have had back in.
Was it 2012 or 2011?
This happened to you eleven?
Yeah, I think in a lot of ways, it has improved, but it depends really depends on the hospital and where you are located.
Obviously, if you're in a, you're in a very small, rural community, where a doctor has never heard of GBS, and has certainly never dealt with it before.
They might not understand kind of what we go through.
So with gbas with that how it's affecting the nerves is its can sometimes cause severe inflammation.
And what that does is cause sensitivity.
And so when I was in ICU, I was it felt like somebody would like, if somebody would touch me, it felt like somebody was stabbing me, because my nerves were basically not firing properly.
And so it was very, very painful.
And a lot of doctors, don't understand that and don't even realize Eli's that and so nurses and doctors are coming and trying to move you around, not realizing that it's causing the most excruciating pain.
A lot of doctors didn't realize that, you know what, I am coherent, and I can hear you.
And that's actually why I wrote my book.
It's, it is aimed at a lot.
Not only GBS survivors, obviously, but it seemed at my medical professionals to understand what it is that we go through.
And I do think that my story as Was as a social media has made it a lot easier for people to share their stories as well online.
And so it is able to get into the hands of medical professionals that are dealing with it.
Well holy it's been such a pleasure chatting with you.
I know I could just add have dozens of more questions but we are we're gonna come to the end of this episode.
Maybe I'll just have to bring you back and chat more about your ongoing life after after DBS.
But the thing I always like to ask my guess is for someone who's been listening to this conversation.
Even hearing your very, very remarkable story.
If you what is one sort of nugget or piece of wisdom or hope that you would like people to take away from here in this conversation today.
Just that, you know, what?
If I can go through what I can, then you can overcome what you're going through and I know it doesn't feel like that at the moment, but I always just go back to that sign that I had taped above my bed, and I literally have that sign still taped to the wall.
My office and it's that courage doesn't always Roar.
It's the quiet voice saying I can try again tomorrow, and so just promising that you'll never give up no matter what it is that you're working towards no matter what struggle it is that you're trying to overcome just not giving up and allowing yourself to, you know what, take breaks and know that it's not going to be easy and know that if you're struggling that that's okay.
You don't have to feel like you're strong and you don't have to feel like you're, you're just this powerful.
Person that can handle this.
You don't have to feel like that.
All you have to do is just keep trying and keep It's for being on, thank you for the amazing work that you do, and for sharing your amazing and inspiring story.
Thank you so much for having me.
Thank you so much for tuning in to between the before and after if you've enjoyed this episode, please subscribe and leave a review because that helps his podcast to reach and Inspire more people.
I love exploring the stories that take place between the before and after the powerful experiences that shape, who we become and I love human potential.
I love the possibilities that lie within us.
So, whatever you may be up against.
I hope these stories inspire you because you're still here, your story's not done yet, so, keep moving forward.
Coach Jon is a weight loss coach and emotional eating expert who has lost 100lbs. From nanotechnology researcher, to Navy marine engineer, to globetrotting nomad, Coach Jon spent most of his life running from his true calling, until one question changed his life. Now he's on a mission to help others lose weight for good and leave BS diets in the rearview mirror.
With Freedom Nutrition Coaching he marries the Science of Metabolism with the Psychology of Behavior Change and the Compassion of Human Connection to create life-changing transformations with his clients.
Author and Guillain-Barre Syndrome survivor
Holly Frances is the author of Life Support, Surviving Guillain-Barre Syndrome, the true story of how a young woman turned her medical horror after the birth of her daughter into a crusade of helping others. She is a mom in a blended family of six (including pup Benji) and the face behind Holly After GBS on social media, where her recovery videos have inspired millions of people around the world.
Holly’s background is in Human Resources but her passion is in GBS advocacy and fitness. When she isn’t writing, and connecting with others on social media, she can be found hanging with family and friends, binge-watching documentaries, at the gym, or walking her dog. Follow her on social media @hollyaftergbs
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